Re: Frustrated and feeling hopeless

[Guest guest]

Mindi,I'm so sorry. What a terrible situation and story. This disease is so horrible for some. You don't say what part of the country you live in -- since you are open to aspirin desense and informed, I wouldn't stop until you find someone to do it. There are a lot of people on this site who can refer you to folks in their area. It doesn't work for a lot of people, but it does help many. Many have enough luck with it that they really begin to live like normal humans. It should at least help you have that glass of wine. I couldn't drink wine prior to desens and now I can, because aspirin eliminates the salicylate sensitivity. It is expensive, but if you have insurance they usually cover it these days.I think the fact that you are informed is a really big step -- the next would be finding an ENT who really knows about this stuff.I've also had luck with taking lots of Vit D and lots of fish oil -- not a cure, but things definitely improved. Good luck!Joan On Jul 6, 2011, at 7:51 PM, mindiestrella wrote:

I have had Samters for about 15 years. I am 39. I have seen many different doctors but my Samters has always been out of control. I have had 5 sinus surgeries.

I am always stuffy, with no sense of smell, varying amounts of sinus pain, and constant need of my albulteral inhaler.

I blow my nose at least 50 times a day. I have to have tissues everywhere I go. When I go out to a restaurant I can't even make it though a meal without having to excuse myself to go blow my nose. With a stuffy nose it is hard to make business calls. Sometimes I have a hard time saying my own name, Mindi, because of the letter combination. (Go ahead an hold your nose and try to say it )

I also have to carry my inhaler because I have to take it at least once on most days. I am careful not to exert myself because even carying a simple bag of groceries up the stairs will cause me to have an asthma attack.

I currently take Advair and a generic substition for Nasonex. I have tried Singulair in the past but it didn't help and just me sleepy the next day. I tried it twice and each time only tried it for a week. After reading the other posts it sounds like I might have stopped it to early. I would try it again if it didn't make me so tired.

The only time I get any relief is when I take a Prednisone boost. Sometimes after a week of taking it I will even get my sense of smell back for a few hours. My sinuses and asthma are better for a week or two. The doctor will only give me one Prednisone boost a year unless it is an emergency.

Claritin D helps with the stuffiness. But only if I haven't taken it for awhile. I have to decide which day during that week that I want to feel better. If I try to take it again within a few days then it doesn't work at all.

About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I probably had it since birth. I was given a CPAP but as soon as I started using it I developed a bad sinus infection. Then I started developing Samter symptoms. This means that I have had a stuffy nose the whole time and have not been able to use a CPAP.

I have asked the doctors about other medications and they have said there isn't anything. I have asked about aspirin desen. and none of them have been willing to refer me. At my last ENT visit he said my polyps were "impressive" and told me to just let him know when I'm ready for the next surgery. Even if I wanted another surgery I can't because I'm still not done paying for the last one.

I want to breathe, I want to smell, I want to excersize, I want to be pain free, I want to sleep soundly, I want to feel awake during the day, I want to be able to go places, I want to be able to have a glass of wine........ I want to live.

[Guest guest]

Mindi,Your story sounds very familiar. I started with the Samters when I was 25 and suffered horribly for years, even with high doses of prednisone. Please know there are others who are suffering like you and you are not alone!I've seen different posts about what works for others and none of it ever worked for me, and aspirin desens. was not an option for me. What finally got me on the right track was being tested for Churgg Strauss. The rheumatologist did not think I had it, but did blood tests anyway, and sure enough.... I was on Cytoxin for a year, then Imuran for 2 years. I have now been steroid free for 4 years, and only occassionally even need the rescue inhaler. Singulair and Advair keep things under control. And no polyps since 1996!!This may not be the case with you, but one thing I've learned with this stuff is to not give

up (I'm now 62). If this dr doesn't help you, get a different one. If that one doesn't help, get another one. It's your health and you know your body. See a rheumatologist to rule out vasculitis like CSS, see a cardiologist to rule out heart trouble (symptoms are often the same). See anyone you need to and keep trying!Most of all, don't give up! Allow yourself to grieve for the loss of your health, take a day or two now and then to wallow in it and enjoy the frustration, then get back to the business of what your life is. Your family needs it and so do you!!!OK, off my soapbox. Take care of yourself. Billie Ford msbfford@... ""Real power is the ability to pause between stimulus and response, and in that pause, choose." Rollo MayFrom: mindiestrella <mindiestrella@...>Subject: Frustrated and feeling hopelesssamters Date: Wednesday, July 6, 2011, 8:51 PM

I have had Samters for about 15 years. I am 39. I have seen many different doctors but my Samters has always been out of control. I have had 5 sinus surgeries.

I am always stuffy, with no sense of smell, varying amounts of sinus pain, and constant need of my albulteral inhaler.

I blow my nose at least 50 times a day. I have to have tissues everywhere I go. When I go out to a restaurant I can't even make it though a meal without having to excuse myself to go blow my nose. With a stuffy nose it is hard to make business calls. Sometimes I have a hard time saying my own name, Mindi, because of the letter combination. (Go ahead an hold your nose and try to say it )

I also have to carry my inhaler because I have to take it at least once on most days. I am careful not to exert myself because even carying a simple bag of groceries up the stairs will cause me to have an asthma attack.

I currently take Advair and a generic substition for Nasonex. I have tried Singulair in the past but it didn't help and just me sleepy the next day. I tried it twice and each time only tried it for a week. After reading the other posts it sounds like I might have stopped it to early. I would try it again if it didn't make me so tired.

The only time I get any relief is when I take a Prednisone boost. Sometimes after a week of taking it I will even get my sense of smell back for a few hours. My sinuses and asthma are better for a week or two. The doctor will only give me one Prednisone boost a year unless it is an emergency.

Claritin D helps with the stuffiness. But only if I haven't taken it for awhile. I have to decide which day during that week that I want to feel better. If I try to take it again within a few days then it doesn't work at all.

About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I probably had it since birth. I was given a CPAP but as soon as I started using it I developed a bad sinus infection. Then I started developing Samter symptoms. This means that I have had a stuffy nose the whole time and have not been able to use a CPAP.

I have asked the doctors about other medications and they have said there isn't anything. I have asked about aspirin desen. and none of them have been willing to refer me. At my last ENT visit he said my polyps were "impressive" and told me to just let him know when I'm ready for the next surgery. Even if I wanted another surgery I can't because I'm still not done paying for the last one.

I want to breathe, I want to smell, I want to excersize, I want to be pain free, I want to sleep soundly, I want to feel awake during the day, I want to be able to go places, I want to be able to have a glass of wine........ I want to live.

[Guest guest]

Thank you for posting your story. I have many of the same problems but I don't suffer like you are. Hopefully some EN T will have a solution that works for you. Hang in there and don't give up. Crusher. iPhone MessageOn Jul 6, 2011, at 8:51 PM, "mindiestrella" <mindiestrella@...> wrote:

I have had Samters for about 15 years. I am 39. I have seen many different doctors but my Samters has always been out of control. I have had 5 sinus surgeries.

I am always stuffy, with no sense of smell, varying amounts of sinus pain, and constant need of my albulteral inhaler.

I blow my nose at least 50 times a day. I have to have tissues everywhere I go. When I go out to a restaurant I can't even make it though a meal without having to excuse myself to go blow my nose. With a stuffy nose it is hard to make business calls. Sometimes I have a hard time saying my own name, Mindi, because of the letter combination. (Go ahead an hold your nose and try to say it )

I also have to carry my inhaler because I have to take it at least once on most days. I am careful not to exert myself because even carying a simple bag of groceries up the stairs will cause me to have an asthma attack.

I currently take Advair and a generic substition for Nasonex. I have tried Singulair in the past but it didn't help and just me sleepy the next day. I tried it twice and each time only tried it for a week. After reading the other posts it sounds like I might have stopped it to early. I would try it again if it didn't make me so tired.

The only time I get any relief is when I take a Prednisone boost. Sometimes after a week of taking it I will even get my sense of smell back for a few hours. My sinuses and asthma are better for a week or two. The doctor will only give me one Prednisone boost a year unless it is an emergency.

Claritin D helps with the stuffiness. But only if I haven't taken it for awhile. I have to decide which day during that week that I want to feel better. If I try to take it again within a few days then it doesn't work at all.

About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I probably had it since birth. I was given a CPAP but as soon as I started using it I developed a bad sinus infection. Then I started developing Samter symptoms. This means that I have had a stuffy nose the whole time and have not been able to use a CPAP.

I have asked the doctors about other medications and they have said there isn't anything. I have asked about aspirin desen. and none of them have been willing to refer me. At my last ENT visit he said my polyps were "impressive" and told me to just let him know when I'm ready for the next surgery. Even if I wanted another surgery I can't because I'm still not done paying for the last one.

I want to breathe, I want to smell, I want to excersize, I want to be pain free, I want to sleep soundly, I want to feel awake during the day, I want to be able to go places, I want to be able to have a glass of wine........ I want to live.

[Guest guest]

Wow. Thank you all for your support. I was expecting more of a " quit whining

you big old cry baby " .

>

> > I have had Samters for about 15 years. I am 39. I have seen many different

doctors but my Samters has always been out of control. I have had 5 sinus

surgeries.

> >

> > I am always stuffy, with no sense of smell, varying amounts of sinus pain,

and constant need of my albulteral inhaler.

> >

> > I blow my nose at least 50 times a day. I have to have tissues everywhere I

go. When I go out to a restaurant I can't even make it though a meal without

having to excuse myself to go blow my nose. With a stuffy nose it is hard to

make business calls. Sometimes I have a hard time saying my own name, Mindi,

because of the letter combination. (Go ahead an hold your nose and try to say it

)

> >

> > I also have to carry my inhaler because I have to take it at least once on

most days. I am careful not to exert myself because even carying a simple bag of

groceries up the stairs will cause me to have an asthma attack.

> >

> > I currently take Advair and a generic substition for Nasonex. I have tried

Singulair in the past but it didn't help and just me sleepy the next day. I

tried it twice and each time only tried it for a week. After reading the other

posts it sounds like I might have stopped it to early. I would try it again if

it didn't make me so tired.

> >

> > The only time I get any relief is when I take a Prednisone boost. Sometimes

after a week of taking it I will even get my sense of smell back for a few

hours. My sinuses and asthma are better for a week or two. The doctor will only

give me one Prednisone boost a year unless it is an emergency.

> >

> > Claritin D helps with the stuffiness. But only if I haven't taken it for

awhile. I have to decide which day during that week that I want to feel better.

If I try to take it again within a few days then it doesn't work at all.

> >

> > About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe

I probably had it since birth. I was given a CPAP but as soon as I started using

it I developed a bad sinus infection. Then I started developing Samter symptoms.

This means that I have had a stuffy nose the whole time and have not been able

to use a CPAP.

> >

> > I have asked the doctors about other medications and they have said there

isn't anything. I have asked about aspirin desen. and none of them have been

willing to refer me. At my last ENT visit he said my polyps were " impressive "

and told me to just let him know when I'm ready for the next surgery. Even if I

wanted another surgery I can't because I'm still not done paying for the last

one.

> >

> > I want to breathe, I want to smell, I want to excersize, I want to be pain

free, I want to sleep soundly, I want to feel awake during the day, I want to be

able to go places, I want to be able to have a glass of wine........ I want to

live.

> >

> >

>

[Guest guest]

Most of us in this forum know the pains and sufferings brought about by this disease. We know some of us suffer much more than others. But we all fight just like you for the solution just to be "normal" again. I have no SOS and have been having surgeries for the past 25 years or so. I think I'm on 11 or 12 now. My asthma flares and I am forced to use my rescue inhaler every day along with Advair. I have to do a nebulizer treatment twice a day in times like these. I've been on rounds of prednisone so many times I have arthritis pains in all my joints now at age 59. I can hardly make a fist any more. But its better than not breathing. And I know I am not the only one, and that there are others who's pains are deeper than

mine.Most of us are here for support, not "stop whining". We can relate and know how you feel and we are right there with you. You are not alone.CrusherFrom: mindiestrella <mindiestrella@...>samters Sent: Wednesday, July 6, 2011 11:01 PMSubject: Re: Frustrated and feeling hopeless

Wow. Thank you all for your support. I was expecting more of a "quit whining you big old cry baby".

>

> > I have had Samters for about 15 years. I am 39. I have seen many different doctors but my Samters has always been out of control. I have had 5 sinus surgeries.

> >

> > I am always stuffy, with no sense of smell, varying amounts of sinus pain, and constant need of my albulteral inhaler.

> >

> > I blow my nose at least 50 times a day. I have to have tissues everywhere I go. When I go out to a restaurant I can't even make it though a meal without having to excuse myself to go blow my nose. With a stuffy nose it is hard to make business calls. Sometimes I have a hard time saying my own name, Mindi, because of the letter combination. (Go ahead an hold your nose and try to say it )

> >

> > I also have to carry my inhaler because I have to take it at least once on most days. I am careful not to exert myself because even carying a simple bag of groceries up the stairs will cause me to have an asthma attack.

> >

> > I currently take Advair and a generic substition for Nasonex. I have tried Singulair in the past but it didn't help and just me sleepy the next day. I tried it twice and each time only tried it for a week. After reading the other posts it sounds like I might have stopped it to early. I would try it again if it didn't make me so tired.

> >

> > The only time I get any relief is when I take a Prednisone boost. Sometimes after a week of taking it I will even get my sense of smell back for a few hours. My sinuses and asthma are better for a week or two. The doctor will only give me one Prednisone boost a year unless it is an emergency.

> >

> > Claritin D helps with the stuffiness. But only if I haven't taken it for awhile. I have to decide which day during that week that I want to feel better. If I try to take it again within a few days then it doesn't work at all.

> >

> > About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I probably had it since birth. I was given a CPAP but as soon as I started using it I developed a bad sinus infection. Then I started developing Samter symptoms. This means that I have had a stuffy nose the whole time and have not been able to use a CPAP.

> >

> > I have asked the doctors about other medications and they have said there isn't anything. I have asked about aspirin desen. and none of them have been willing to refer me. At my last ENT visit he said my polyps were "impressive" and told me to just let him know when I'm ready for the next surgery. Even if I wanted another surgery I can't because I'm still not done paying for the last one.

> >

> > I want to breathe, I want to smell, I want to excersize, I want to be pain free, I want to sleep soundly, I want to feel awake during the day, I want to be able to go places, I want to be able to have a glass of wine........ I want to live.

> >

> >

>

[Guest guest]

Hi,

I think we can all sympathise with you as our stories are very similar. I don't see why you can only have one steroid boost a year. I'm lucky in that I'm 'allowed' to manage all my own meds so i just order what i need and use what I need when i need - so I give myself about 5-6 steroid boosts a year. I don't use a very high dose though, and I've had my bone density checked and it hasn't got any worse since i started 10 years ago.

If you haven't tried aspirin desense, it really can help, especially with the constant nose blowing. Have a read over past posts on this forum and see what you can find that will help,

Best wishes

Becky

From: mindiestrella <mindiestrella@...>samters Sent: Thu, 7 July, 2011 5:01:13Subject: Re: Frustrated and feeling hopeless

Wow. Thank you all for your support. I was expecting more of a "quit whining you big old cry baby". > > > I have had Samters for about 15 years. I am 39. I have seen many different doctors but my Samters has always been out of control. I have had 5 sinus surgeries.> > > > I am always stuffy, with no sense of smell, varying amounts of sinus pain, and constant need of my albulteral

inhaler. > > > > I blow my nose at least 50 times a day. I have to have tissues everywhere I go. When I go out to a restaurant I can't even make it though a meal without having to excuse myself to go blow my nose. With a stuffy nose it is hard to make business calls. Sometimes I have a hard time saying my own name, Mindi, because of the letter combination. (Go ahead an hold your nose and try to say it ) > > > > I also have to carry my inhaler because I have to take it at least once on most days. I am careful not to exert myself because even carying a simple bag of groceries up the stairs will cause me to have an asthma attack.> > > > I currently take Advair and a generic substition for Nasonex. I have tried Singulair in the past but it didn't help and just me sleepy the next day. I tried it twice and each time only tried it for a week. After reading the other posts it sounds like I might

have stopped it to early. I would try it again if it didn't make me so tired.> > > > The only time I get any relief is when I take a Prednisone boost. Sometimes after a week of taking it I will even get my sense of smell back for a few hours. My sinuses and asthma are better for a week or two. The doctor will only give me one Prednisone boost a year unless it is an emergency.> > > > Claritin D helps with the stuffiness. But only if I haven't taken it for awhile. I have to decide which day during that week that I want to feel better. If I try to take it again within a few days then it doesn't work at all.> > > > About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I probably had it since birth. I was given a CPAP but as soon as I started using it I developed a bad sinus infection. Then I started developing Samter symptoms. This means that I have had a stuffy nose the whole

time and have not been able to use a CPAP.> > > > I have asked the doctors about other medications and they have said there isn't anything. I have asked about aspirin desen. and none of them have been willing to refer me. At my last ENT visit he said my polyps were "impressive" and told me to just let him know when I'm ready for the next surgery. Even if I wanted another surgery I can't because I'm still not done paying for the last one.> > > > I want to breathe, I want to smell, I want to excersize, I want to be pain free, I want to sleep soundly, I want to feel awake during the day, I want to be able to go places, I want to be able to have a glass of wine........ I want to live.> > > >>

[Guest guest]

Hello ,could you say what your dose of pred is?

My GP will not prescribe me a burst (40mg per day for 5 days)more than three

times a year.

A burst like this would give me my SOS for about 4 weeks

> >

> > > I have had Samters for about 15 years. I am 39. I have seen many different

> >doctors but my Samters has always been out of control. I have had 5 sinus

> >surgeries.

> > >

> > > I am always stuffy, with no sense of smell, varying amounts of sinus pain,

> >and constant need of my albulteral inhaler.

> >

> > >

> > > I blow my nose at least 50 times a day. I have to have tissues everywhere

I

> >go. When I go out to a restaurant I can't even make it though a meal without

> >having to excuse myself to go blow my nose. With a stuffy nose it is hard to

> >make business calls. Sometimes I have a hard time saying my own name, Mindi,

> >because of the letter combination. (Go ahead an hold your nose and try to say

it

> > )

> >

> > >

> > > I also have to carry my inhaler because I have to take it at least once on

> >most days. I am careful not to exert myself because even carying a simple bag

of

> >groceries up the stairs will cause me to have an asthma attack.

> > >

> > > I currently take Advair and a generic substition for Nasonex. I have tried

> >Singulair in the past but it didn't help and just me sleepy the next day. I

> >tried it twice and each time only tried it for a week. After reading the

other

> >posts it sounds like I might have stopped it to early. I would try it again

if

> >it didn't make me so tired.

> > >

> > > The only time I get any relief is when I take a Prednisone boost.

Sometimes

> >after a week of taking it I will even get my sense of smell back for a few

> >hours. My sinuses and asthma are better for a week or two. The doctor will

only

> >give me one Prednisone boost a year unless it is an emergency.

> > >

> > > Claritin D helps with the stuffiness. But only if I haven't taken it for

> >awhile. I have to decide which day during that week that I want to feel

better.

> >If I try to take it again within a few days then it doesn't work at all.

> > >

> > > About 15 years ago I was diagnosed with Sleep Apnea and the doctors

believe I

> >probably had it since birth. I was given a CPAP but as soon as I started

using

> >it I developed a bad sinus infection. Then I started developing Samter

symptoms.

> >This means that I have had a stuffy nose the whole time and have not been

able

> >to use a CPAP.

> > >

> > > I have asked the doctors about other medications and they have said there

> >isn't anything. I have asked about aspirin desen. and none of them have been

> >willing to refer me. At my last ENT visit he said my polyps were " impressive "

> >and told me to just let him know when I'm ready for the next surgery. Even if

I

> >wanted another surgery I can't because I'm still not done paying for the last

> >one.

> > >

> > > I want to breathe, I want to smell, I want to excersize, I want to be pain

> >free, I want to sleep soundly, I want to feel awake during the day, I want to

be

> >able to go places, I want to be able to have a glass of wine........ I want

to

> >live.

> > >

> > >

> >

>

[Guest guest]

Mindi,

Your story is the same as mine. Like others here, I can relate to everything you've said. I've been on antibiotics 4-6x per yr for ear/sinus infections and had 7 sinus surgeries in the past 14 yrs, and I am 41.

Last Sept I underwent Asp. Desens. I have not had any infections/ear pain/sinus pain since then. I did not regain my SOS unfortunately.

You haven't mentioned where you live, but no matter where it is, I recommend you contact Dr. Laidlaw in Boston. I'm sure she can work w/ your local doctor to do aspirin desens. It's really your only hope I think you feel better. She currently is treating 85 Samters Patients and is doing research. You can let her know I referred you.

M. Laidlaw, MDDepartment of Allergy/ImmunologyBrigham and Women's Hospital, Boston MALaboratory Office: 617-525-1238Outpatient Clinic: 617-732-9850tlaidlaw@...

Oh...btw, I don't think you'll ever be able to drink wine/beer. If I have a drink its a vodka cocktail!

Good luck,

Stacey in MA

Frustrated and feeling hopeless

I have had Samters for about 15 years. I am 39. I have seen many different doctors but my Samters has always been out of control. I have had 5 sinus surgeries.I am always stuffy, with no sense of smell, varying amounts of sinus pain, and constant need of my albulteral inhaler. I blow my nose at least 50 times a day. I have to have tissues everywhere I go. When I go out to a restaurant I can't even make it though a meal without having to excuse myself to go blow my nose. With a stuffy nose it is hard to make business calls. Sometimes I have a hard time saying my own name, Mindi, because of the letter combination. (Go ahead an hold your nose and try to say it ) I also have to carry my inhaler because I have to take it at least once on most days. I am careful not to exert myself because even carying a simple bag of groceries up the stairs will cause me to have an asthma attack.I currently take Advair and a generic substition for Nasonex. I have tried Singulair in the past but it didn't help and just me sleepy the next day. I tried it twice and each time only tried it for a week. After reading the other posts it sounds like I might have stopped it to early. I would try it again if it didn't make me so tired.The only time I get any relief is when I take a Prednisone boost. Sometimes after a week of taking it I will even get my sense of smell back for a few hours. My sinuses and asthma are better for a week or two. The doctor will only give me one Prednisone boost a year unless it is an emergency.Claritin D helps with the stuffiness. But only if I haven't taken it for awhile. I have to decide which day during that week that I want to feel better. If I try to take it again within a few days then it doesn't work at all.About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I probably had it since birth. I was given a CPAP but as soon as I started using it I developed a bad sinus infection. Then I started developing Samter symptoms. This means that I have had a stuffy nose the whole time and have not been able to use a CPAP.I have asked the doctors about other medications and they have said there isn't anything. I have asked about aspirin desen. and none of them have been willing to refer me. At my last ENT visit he said my polyps were "impressive" and told me to just let him know when I'm ready for the next surgery. Even if I wanted another surgery I can't because I'm still not done paying for the last one.I want to breathe, I want to smell, I want to excersize, I want to be pain free, I want to sleep soundly, I want to feel awake during the day, I want to be able to go places, I want to be able to have a glass of wine........ I want to live.

[Guest guest]

Hi ,

I have 4 days of 25mg then taper down by 5mg a day, so it would be:

Day 1 - 25mg

Day 2 - 25mg

Day 3 - 25mg

Day 4 - 25mg

Day 5 - 20mg

Day 6 - 15mg

day 7 - 10mg

Day 8 - 5mg

This will open up my sinuses and help all the gunk clear, but since I had my last surgery last June, i have had almost no sense of smell, and no amount of steroids seems to bring that back. That bit is frustrating, but i very rarely get a whiff of coffee of garlic, but only with a very good close sniff! The steroids do help me feel a lot better though. I also take 650mg aspirin a day, 10mg Montelukast, flixonase nasules and 2 puffs of my asthma puffer, and 2ce daily sinus rinses. Sadly without any one of these meds i get quite sick, so I guess I'm quite a high maintenance samterite. With all these meds i do quite well and have only had 2 (extensive) sinus surgeries - 10 years and 1 year ago.

Becky

From: rdawson5656 <rdawson5656@...>samters Sent: Thu, 7 July, 2011 11:42:58Subject: Re: Frustrated and feeling hopeless

Hello ,could you say what your dose of pred is?My GP will not prescribe me a burst (40mg per day for 5 days)more than three times a year.A burst like this would give me my SOS for about 4 weeks> > > > > I have had Samters for about 15 years. I am 39. I have seen many different > >doctors but my Samters has always been out of control. I have had 5 sinus > >surgeries.> > > > > > I am always stuffy, with no sense of smell, varying amounts of sinus pain, > >and constant need of my albulteral inhaler. > >> > > > > > I blow my nose at least 50 times a day. I have to have tissues everywhere I > >go. When

I go out to a restaurant I can't even make it though a meal without > >having to excuse myself to go blow my nose. With a stuffy nose it is hard to > >make business calls. Sometimes I have a hard time saying my own name, Mindi, > >because of the letter combination. (Go ahead an hold your nose and try to say it > > ) > >> > > > > > I also have to carry my inhaler because I have to take it at least once on > >most days. I am careful not to exert myself because even carying a simple bag of > >groceries up the stairs will cause me to have an asthma attack.> > > > > > I currently take Advair and a generic substition for Nasonex. I have tried > >Singulair in the past but it didn't help and just me sleepy the next day. I > >tried it twice and each time only tried it for a week. After reading the other >

>posts it sounds like I might have stopped it to early. I would try it again if > >it didn't make me so tired.> > > > > > The only time I get any relief is when I take a Prednisone boost. Sometimes > >after a week of taking it I will even get my sense of smell back for a few > >hours. My sinuses and asthma are better for a week or two. The doctor will only > >give me one Prednisone boost a year unless it is an emergency.> > > > > > Claritin D helps with the stuffiness. But only if I haven't taken it for > >awhile. I have to decide which day during that week that I want to feel better. > >If I try to take it again within a few days then it doesn't work at all.> > > > > > About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I > >probably had it since birth. I was given a CPAP but as

soon as I started using > >it I developed a bad sinus infection. Then I started developing Samter symptoms. > >This means that I have had a stuffy nose the whole time and have not been able > >to use a CPAP.> > > > > > I have asked the doctors about other medications and they have said there > >isn't anything. I have asked about aspirin desen. and none of them have been > >willing to refer me. At my last ENT visit he said my polyps were "impressive" > >and told me to just let him know when I'm ready for the next surgery. Even if I > >wanted another surgery I can't because I'm still not done paying for the last > >one.> > > > > > I want to breathe, I want to smell, I want to excersize, I want to be pain > >free, I want to sleep soundly, I want to feel awake during the day, I want to be > >able to go

places, I want to be able to have a glass of wine........ I want to > >live.> > > > > >> >>

[Guest guest]

I use almost(just one more day of 25mg) the same dose of prednisone. It makes a huge difference.I always have the prednisone available. It's about every two months that I have to use it.

Re: Frustrated and feeling hopeless

Hello ,could you say what your dose of pred is?

My GP will not prescribe me a burst (40mg per day for 5 days)more than three times a year.

A burst like this would give me my SOS for about 4 weeks

> >

> > > I have had Samters for about 15 years. I am 39. I have seen many different

> >doctors but my Samters has always been out of control. I have had 5 sinus

> >surgeries.

> > >

> > > I am always stuffy, with no sense of smell, varying amounts of sinus pain,

> >and constant need of my albulteral inhaler.

> >

> > >

> > > I blow my nose at least 50 times a day. I have to have tissues everywhere I

> >go. When

I go out to a restaurant I can't even make it though a meal without

> >having to excuse myself to go blow my nose. With a stuffy nose it is hard to

> >make business calls. Sometimes I have a hard time saying my own name, Mindi,

> >because of the letter combination. (Go ahead an hold your nose and try to say it

> > )

> >

> > >

> > > I also have to carry my inhaler because I have to take it at least once on

> >most days. I am careful not to exert myself because even carying a simple bag of

> >groceries up the stairs will cause me to have an asthma attack.

> > >

> > > I currently take Advair and a generic substition for Nasonex. I have tried

> >Singulair in the past but it didn't help and just me sleepy the next day. I

> >tried it twice and each time only tried it for a week. After reading the other

>

>posts it sounds like I might have stopped it to early. I would try it again if

> >it didn't make me so tired.

> > >

> > > The only time I get any relief is when I take a Prednisone boost. Sometimes

> >after a week of taking it I will even get my sense of smell back for a few

> >hours. My sinuses and asthma are better for a week or two. The doctor will only

> >give me one Prednisone boost a year unless it is an emergency.

> > >

> > > Claritin D helps with the stuffiness. But only if I haven't taken it for

> >awhile. I have to decide which day during that week that I want to feel better.

> >If I try to take it again within a few days then it doesn't work at all.

> > >

> > > About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I

> >probably had it since birth. I was given a CPAP but as

soon as I started using

> >it I developed a bad sinus infection. Then I started developing Samter symptoms.

> >This means that I have had a stuffy nose the whole time and have not been able

> >to use a CPAP.

> > >

> > > I have asked the doctors about other medications and they have said there

> >isn't anything. I have asked about aspirin desen. and none of them have been

> >willing to refer me. At my last ENT visit he said my polyps were "impressive"

> >and told me to just let him know when I'm ready for the next surgery. Even if I

> >wanted another surgery I can't because I'm still not done paying for the last

> >one.

> > >

> > > I want to breathe, I want to smell, I want to excersize, I want to be pain

> >free, I want to sleep soundly, I want to feel awake during the day, I want to be

> >able to go

places, I want to be able to have a glass of wine........ I want to

> >live.

> > >

> > >

> >

>

[Guest guest]

it sounds like we have a very similar steroid regime then - sometimes I add the extra day in. This year I managed to almost stretch out a 3-4 month period of no oral steroids. i just go with how I'm feeling and usually know exactly when i need to start another course (ears totally blocked up and worsening asthma or very heavy feeling sinuses, or combo of all 3 trigger this). My nasal polyps have been very well controlled though, especially since aspirin desense. My most troublesome issue is with permanent sinus infections.

Becky

From: "ChartacJS@..." <ChartacJS@...>samters Sent: Thu, 7 July, 2011 13:51:01Subject: Re: Re: Frustrated and feeling hopeless

I use almost(just one more day of 25mg) the same dose of prednisone. It makes a huge difference.I always have the prednisone available. It's about every two months that I have to use it.

Re: Frustrated and feeling hopeless

Hello ,could you say what your dose of pred is?My GP will not prescribe me a burst (40mg per day for 5 days)more than three times a year.A burst like this would give me my SOS for about 4 weeks> > > > > I have had Samters for about 15 years. I am 39. I have seen many different > >doctors but my Samters has always been out of control. I have had 5 sinus > >surgeries.> > > > > > I am always stuffy, with no sense of smell, varying amounts of sinus pain, > >and constant need of my albulteral inhaler. > >> > > > > > I blow my nose at least 50 times a day. I have to have tissues everywhere I > >go. When

I go out to a restaurant I can't even make it though a meal without > >having to excuse myself to go blow my nose. With a stuffy nose it is hard to > >make business calls. Sometimes I have a hard time saying my own name, Mindi, > >because of the letter combination. (Go ahead an hold your nose and try to say it > > ) > >> > > > > > I also have to carry my inhaler because I have to take it at least once on > >most days. I am careful not to exert myself because even carying a simple bag of > >groceries up the stairs will cause me to have an asthma attack.> > > > > > I currently take Advair and a generic substition for Nasonex. I have tried > >Singulair in the past but it didn't help and just me sleepy the next day. I > >tried it twice and each time only tried it for a week. After reading the other >

>posts it sounds like I might have stopped it to early. I would try it again if > >it didn't make me so tired.> > > > > > The only time I get any relief is when I take a Prednisone boost. Sometimes > >after a week of taking it I will even get my sense of smell back for a few > >hours. My sinuses and asthma are better for a week or two. The doctor will only > >give me one Prednisone boost a year unless it is an emergency.> > > > > > Claritin D helps with the stuffiness. But only if I haven't taken it for > >awhile. I have to decide which day during that week that I want to feel better. > >If I try to take it again within a few days then it doesn't work at all.> > > > > > About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I > >probably had it since birth. I was given a CPAP but as

soon as I started using > >it I developed a bad sinus infection. Then I started developing Samter symptoms. > >This means that I have had a stuffy nose the whole time and have not been able > >to use a CPAP.> > > > > > I have asked the doctors about other medications and they have said there > >isn't anything. I have asked about aspirin desen. and none of them have been > >willing to refer me. At my last ENT visit he said my polyps were "impressive" > >and told me to just let him know when I'm ready for the next surgery. Even if I > >wanted another surgery I can't because I'm still not done paying for the last > >one.> > > > > > I want to breathe, I want to smell, I want to excersize, I want to be pain > >free, I want to sleep soundly, I want to feel awake during the day, I want to be > >able to go

places, I want to be able to have a glass of wine........ I want to > >live.> > > > > >> >>

[Guest guest]

Becky,

We do indeed know when to start our treatment. I am post desense as well. Generally under control and much better than before desense.

My doctor wanted a heavier dose when I was really feeling bad. But the dose that we use....I think it was based on your suggestion some time ago...I highly recommend.

Re: Frustrated and feeling hopeless

Hello ,could you say what your dose of pred is?

My GP will not prescribe me a burst (40mg per day for 5 days)more than three times a year.

A burst like this would give me my SOS for about 4 weeks

> >

> > > I have had Samters for about 15 years. I am 39. I have seen many different

> >doctors but my Samters has always been out of control. I have had 5 sinus

> >surgeries.

> > >

> > > I am always stuffy, with no sense of smell, varying amounts of sinus pain,

> >and constant need of my albulteral inhaler.

> >

> > >

> > > I blow my nose at least 50 times a day. I have to have tissues everywhere I

> >go. When

I go out to a restaurant I can't even make it though a meal without

> >having to excuse myself to go blow my nose. With a stuffy nose it is hard to

> >make business calls. Sometimes I have a hard time saying my own name, Mindi,

> >because of the letter combination. (Go ahead an hold your nose and try to say it

> > )

> >

> > >

> > > I also have to carry my inhaler because I have to take it at least once on

> >most days. I am careful not to exert myself because even carying a simple bag of

> >groceries up the stairs will cause me to have an asthma attack.

> > >

> > > I currently take Advair and a generic substition for Nasonex. I have tried

> >Singulair in the past but it didn't help and just me sleepy the next day. I

> >tried it twice and each time only tried it for a week. After reading the other

>

>posts it sounds like I might have stopped it to early. I would try it again if

> >it didn't make me so tired.

> > >

> > > The only time I get any relief is when I take a Prednisone boost. Sometimes

> >after a week of taking it I will even get my sense of smell back for a few

> >hours. My sinuses and asthma are better for a week or two. The doctor will only

> >give me one Prednisone boost a year unless it is an emergency.

> > >

> > > Claritin D helps with the stuffiness. But only if I haven't taken it for

> >awhile. I have to decide which day during that week that I want to feel better.

> >If I try to take it again within a few days then it doesn't work at all.

> > >

> > > About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I

> >probably had it since birth. I was given a CPAP but as

soon as I started using

> >it I developed a bad sinus infection. Then I started developing Samter symptoms.

> >This means that I have had a stuffy nose the whole time and have not been able

> >to use a CPAP.

> > >

> > > I have asked the doctors about other medications and they have said there

> >isn't anything. I have asked about aspirin desen. and none of them have been

> >willing to refer me. At my last ENT visit he said my polyps were "impressive"

> >and told me to just let him know when I'm ready for the next surgery. Even if I

> >wanted another surgery I can't because I'm still not done paying for the last

> >one.

> > >

> > > I want to breathe, I want to smell, I want to excersize, I want to be pain

> >free, I want to sleep soundly, I want to feel awake during the day, I want to be

> >able to go

places, I want to be able to have a glass of wine........ I want to

> >live.

> > >

> > >

> >

>

[Guest guest]

Hello

if you have insurance you might want to try Zyflo (zilueton) 600mg - similar to

Singulair but works much better for me personally. It is for asthma but helps

with sinus inflammation as well...its very expensive but their website has some

discount programs - good luck!

dan

> >

> > > I have had Samters for about 15 years. I am 39. I have seen many different

> >doctors but my Samters has always been out of control. I have had 5 sinus

> >surgeries.

> > >

> > > I am always stuffy, with no sense of smell, varying amounts of sinus pain,

> >and constant need of my albulteral inhaler.

> >

> > >

> > > I blow my nose at least 50 times a day. I have to have tissues everywhere

I

> >go. When I go out to a restaurant I can't even make it though a meal without

> >having to excuse myself to go blow my nose. With a stuffy nose it is hard to

> >make business calls. Sometimes I have a hard time saying my own name, Mindi,

> >because of the letter combination. (Go ahead an hold your nose and try to say

it

> > )

> >

> > >

> > > I also have to carry my inhaler because I have to take it at least once on

> >most days. I am careful not to exert myself because even carying a simple bag

of

> >groceries up the stairs will cause me to have an asthma attack.

> > >

> > > I currently take Advair and a generic substition for Nasonex. I have tried

> >Singulair in the past but it didn't help and just me sleepy the next day. I

> >tried it twice and each time only tried it for a week. After reading the

other

> >posts it sounds like I might have stopped it to early. I would try it again

if

> >it didn't make me so tired.

> > >

> > > The only time I get any relief is when I take a Prednisone boost.

Sometimes

> >after a week of taking it I will even get my sense of smell back for a few

> >hours. My sinuses and asthma are better for a week or two. The doctor will

only

> >give me one Prednisone boost a year unless it is an emergency.

> > >

> > > Claritin D helps with the stuffiness. But only if I haven't taken it for

> >awhile. I have to decide which day during that week that I want to feel

better.

> >If I try to take it again within a few days then it doesn't work at all.

> > >

> > > About 15 years ago I was diagnosed with Sleep Apnea and the doctors

believe I

> >probably had it since birth. I was given a CPAP but as soon as I started

using

> >it I developed a bad sinus infection. Then I started developing Samter

symptoms.

> >This means that I have had a stuffy nose the whole time and have not been

able

> >to use a CPAP.

> > >

> > > I have asked the doctors about other medications and they have said there

> >isn't anything. I have asked about aspirin desen. and none of them have been

> >willing to refer me. At my last ENT visit he said my polyps were " impressive "

> >and told me to just let him know when I'm ready for the next surgery. Even if

I

> >wanted another surgery I can't because I'm still not done paying for the last

> >one.

> > >

> > > I want to breathe, I want to smell, I want to excersize, I want to be pain

> >free, I want to sleep soundly, I want to feel awake during the day, I want to

be

> >able to go places, I want to be able to have a glass of wine........ I want

to

> >live.

> > >

> > >

> >

>

[Guest guest]

and ,I am surprised you are able to use pred so often as my GP would

not let me use it this often and it is prescription only in the UK.

Are you being prescribed the drug by your doctors or can it be bought without

prescription in other countries?

> > >

> > > > I have had Samters for about 15 years. I am 39. I have seen many

different

> > >doctors but my Samters has always been out of control. I have had 5 sinus

> > >surgeries.

> > > >

> > > > I am always stuffy, with no sense of smell, varying amounts of sinus

pain,

> > >and constant need of my albulteral inhaler.

> > >

> > > >

> > > > I blow my nose at least 50 times a day. I have to have tissues

everywhere I

> > >go. When I go out to a restaurant I can't even make it though a meal

without

> > >having to excuse myself to go blow my nose. With a stuffy nose it is hard

to

> > >make business calls. Sometimes I have a hard time saying my own name,

Mindi,

> > >because of the letter combination. (Go ahead an hold your nose and try to

say it

> > > )

> > >

> > > >

> > > > I also have to carry my inhaler because I have to take it at least once

on

> > >most days. I am careful not to exert myself because even carying a simple

bag of

> > >groceries up the stairs will cause me to have an asthma attack.

> > > >

> > > > I currently take Advair and a generic substition for Nasonex. I have

tried

> > >Singulair in the past but it didn't help and just me sleepy the next day. I

> > >tried it twice and each time only tried it for a week. After reading the

other

> > >posts it sounds like I might have stopped it to early. I would try it again

if

> > >it didn't make me so tired.

> > > >

> > > > The only time I get any relief is when I take a Prednisone boost.

Sometimes

> > >after a week of taking it I will even get my sense of smell back for a few

> > >hours. My sinuses and asthma are better for a week or two. The doctor will

only

> > >give me one Prednisone boost a year unless it is an emergency.

> > > >

> > > > Claritin D helps with the stuffiness. But only if I haven't taken it for

> > >awhile. I have to decide which day during that week that I want to feel

better.

> > >If I try to take it again within a few days then it doesn't work at all.

> > > >

> > > > About 15 years ago I was diagnosed with Sleep Apnea and the doctors

believe I

> > >probably had it since birth. I was given a CPAP but as soon as I started

using

> > >it I developed a bad sinus infection. Then I started developing Samter

symptoms.

> > >This means that I have had a stuffy nose the whole time and have not been

able

> > >to use a CPAP.

> > > >

> > > > I have asked the doctors about other medications and they have said

there

> > >isn't anything. I have asked about aspirin desen. and none of them have

been

> > >willing to refer me. At my last ENT visit he said my polyps were

" impressive "

> > >and told me to just let him know when I'm ready for the next surgery. Even

if I

> > >wanted another surgery I can't because I'm still not done paying for the

last

> > >one.

> > > >

> > > > I want to breathe, I want to smell, I want to excersize, I want to be

pain

> > >free, I want to sleep soundly, I want to feel awake during the day, I want

to be

> > >able to go places, I want to be able to have a glass of wine........ I want

to

> > >live.

> > > >

> > > >

> > >

> >

>

[Guest guest]

I have talked to my doctor to have enough prescribed for me. It needs a prescription here in the US too. The "Becky" dose is lower than normal but it is very effective.

The "Becky" dose is a total of 175mg. The heavier dose that my doctor has prescribed for when I was really sick is in the region of 360mg to 600mg. Definitely this is a subject for dialogue with your doctor.

Re: Frustrated and feeling hopeless

and ,I am surprised you are able to use pred so often as my GP would not let me use it this often and it is prescription only in the UK.

Are you being prescribed the drug by your doctors or can it be bought without prescription in other countries?

> > >

> > > > I have had Samters for about 15 years. I am 39. I have seen many different

> > >doctors but my Samters has always been out of control. I have had 5 sinus

> > >surgeries.

> > > >

> > > > I am always stuffy, with no sense of smell, varying amounts of sinus pain,

> > >and constant need of my albulteral inhaler.

> > >

> > > >

> > > > I blow my nose at least 50 times a day. I have to have tissues everywhere I

> > >go. When I go out to a restaurant I can't even make it though a meal without

> > >having to excuse myself to go blow my nose. With a stuffy nose it is hard to

> > >make business calls. Sometimes I have a hard time saying my own name, Mindi,

> > >because of the letter combination. (Go ahead an hold your nose and try to say it

> > > )

> > >

> > > >

> > > > I also have to carry my inhaler because I have to take it at least once on

> > >most days. I am careful not to exert myself because even carying a simple bag of

> > >groceries up the stairs will cause me to have an asthma attack.

> > > >

> > > > I currently take Advair and a generic substition for Nasonex. I have tried

> > >Singulair in the past but it didn't help and just me sleepy the next day. I

> > >tried it twice and each time only tried it for a week. After reading the other

> > >posts it sounds like I might have stopped it to early. I would try it again if

> > >it didn't make me so tired.

> > > >

> > > > The only time I get any relief is when I take a Prednisone boost. Sometimes

> > >after a week of taking it I will even get my sense of smell back for a few

> > >hours. My sinuses and asthma are better for a week or two. The doctor will only

> > >give me one Prednisone boost a year unless it is an emergency.

> > > >

> > > > Claritin D helps with the stuffiness. But only if I haven't taken it for

> > >awhile. I have to decide which day during that week that I want to feel better.

> > >If I try to take it again within a few days then it doesn't work at all.

> > > >

> > > > About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I

> > >probably had it since birth. I was given a CPAP but as soon as I started using

> > >it I developed a bad sinus infection. Then I started developing Samter symptoms.

> > >This means that I have had a stuffy nose the whole time and have not been able

> > >to use a CPAP.

> > > >

> > > > I have asked the doctors about other medications and they have said there

> > >isn't anything. I have asked about aspirin desen. and none of them have been

> > >willing to refer me. At my last ENT visit he said my polyps were "impressive"

> > >and told me to just let him know when I'm ready for the next surgery. Even if I

> > >wanted another surgery I can't because I'm still not done paying for the last

> > >one.

> > > >

> > > > I want to breathe, I want to smell, I want to excersize, I want to be pain

> > >free, I want to sleep soundly, I want to feel awake during the day, I want to be

> > >able to go places, I want to be able to have a glass of wine........ I want to

> > >live.

> > > >

> > > >

> > >

> >

>

[Guest guest]

Hi ,

I live in the UK - I have repeat meds and can order what I want when I want (I pay only about £110/year for my meds) - I feel incredibly lucky to be able to do this, and have been able to do so for about 8 years now as my GPs feel I am best able to manage my own illness - I like having the control and would really struggle if I had to beg for a medicine i felt I needed. I have bone density scans and my bones are ok -no worse than before, and I have regular eye tests. I've been told that all in all, I don't take a lot of steroids especially compared with someone who has had an organ transplant. I hope this helps. I really feel we should be in control of managing our illness, as much as we can be and be able to make our own informed decisions.

Best wishes

Becky

From: rdawson5656 <rdawson5656@...>samters Sent: Thu, 7 July, 2011 14:36:17Subject: Re: Frustrated and feeling hopeless

and ,I am surprised you are able to use pred so often as my GP would not let me use it this often and it is prescription only in the UK.Are you being prescribed the drug by your doctors or can it be bought without prescription in other countries?> > > > > > > I have had Samters for about 15 years. I am 39. I have seen many different > > >doctors but my Samters has always been out of control. I have had 5 sinus > > >surgeries.> > > > > > > > I am always stuffy, with no sense of smell, varying amounts of sinus pain, > > >and constant need of my albulteral inhaler. > > >> > > > > > > > I blow my nose at least 50 times a day. I have to have tissues everywhere I > > >go. When I go out to a restaurant I can't even make it though a meal without > > >having to excuse myself to go blow my nose. With a stuffy nose it is hard to > > >make business calls. Sometimes

I have a hard time saying my own name, Mindi, > > >because of the letter combination. (Go ahead an hold your nose and try to say it > > > ) > > >> > > > > > > > I also have to carry my inhaler because I have to take it at least once on > > >most days. I am careful not to exert myself because even carying a simple bag of > > >groceries up the stairs will cause me to have an asthma attack.> > > > > > > > I currently take Advair and a generic substition for Nasonex. I have tried > > >Singulair in the past but it didn't help and just me sleepy the next day. I > > >tried it twice and each time only tried it for a week. After reading the other > > >posts it sounds like I might have stopped it to early. I would try it again if > > >it didn't make me so tired.> > >

> > > > > The only time I get any relief is when I take a Prednisone boost. Sometimes > > >after a week of taking it I will even get my sense of smell back for a few > > >hours. My sinuses and asthma are better for a week or two. The doctor will only > > >give me one Prednisone boost a year unless it is an emergency.> > > > > > > > Claritin D helps with the stuffiness. But only if I haven't taken it for > > >awhile. I have to decide which day during that week that I want to feel better. > > >If I try to take it again within a few days then it doesn't work at all.> > > > > > > > About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I > > >probably had it since birth. I was given a CPAP but as soon as I started using > > >it I developed a bad sinus infection.

Then I started developing Samter symptoms. > > >This means that I have had a stuffy nose the whole time and have not been able > > >to use a CPAP.> > > > > > > > I have asked the doctors about other medications and they have said there > > >isn't anything. I have asked about aspirin desen. and none of them have been > > >willing to refer me. At my last ENT visit he said my polyps were "impressive" > > >and told me to just let him know when I'm ready for the next surgery. Even if I > > >wanted another surgery I can't because I'm still not done paying for the last > > >one.> > > > > > > > I want to breathe, I want to smell, I want to excersize, I want to be pain > > >free, I want to sleep soundly, I want to feel awake during the day, I want to be > > >able to go places, I want

to be able to have a glass of wine........ I want to > > >live.> > > > > > > >> > >> >>

[Guest guest]

He he! I quite like having a dose named after me ;-)

Becky

From: "ChartacJS@..." <ChartacJS@...>samters Sent: Thu, 7 July, 2011 15:06:04Subject: Re: Re: Frustrated and feeling hopeless

I have talked to my doctor to have enough prescribed for me. It needs a prescription here in the US too. The "Becky" dose is lower than normal but it is very effective. The "Becky" dose is a total of 175mg. The heavier dose that my doctor has prescribed for when I was really sick is in the region of 360mg to 600mg. Definitely this is a subject for dialogue with your doctor.

Re: Frustrated and feeling hopeless

and ,I am surprised you are able to use pred so often as my GP would not let me use it this often and it is prescription only in the UK.Are you being prescribed the drug by your doctors or can it be bought without prescription in other countries?> > > > > > > I have had Samters for about 15 years. I am 39. I have seen many different > > >doctors but my Samters has always been out of control. I have had 5 sinus > > >surgeries.> > > > > > > > I am always stuffy, with no sense of smell, varying amounts of sinus pain, > > >and constant need of my albulteral inhaler. > > >> > > > > > > > I blow my nose at least 50 times a day. I have to have tissues everywhere I > > >go. When I go out to a restaurant I can't even make it though a meal without > > >having to excuse myself to go blow my nose. With a stuffy nose it is hard to > > >make business calls. Sometimes I have a

hard time saying my own name, Mindi, > > >because of the letter combination. (Go ahead an hold your nose and try to say it > > > ) > > >> > > > > > > > I also have to carry my inhaler because I have to take it at least once on > > >most days. I am careful not to exert myself because even carying a simple bag of > > >groceries up the stairs will cause me to have an asthma attack.> > > > > > > > I currently take Advair and a generic substition for Nasonex. I have tried > > >Singulair in the past but it didn't help and just me sleepy the next day. I > > >tried it twice and each time only tried it for a week. After reading the other > > >posts it sounds like I might have stopped it to early. I would try it again if > > >it didn't make me so tired.> > > >

> > > > The only time I get any relief is when I take a Prednisone boost. Sometimes > > >after a week of taking it I will even get my sense of smell back for a few > > >hours. My sinuses and asthma are better for a week or two. The doctor will only > > >give me one Prednisone boost a year unless it is an emergency.> > > > > > > > Claritin D helps with the stuffiness. But only if I haven't taken it for > > >awhile. I have to decide which day during that week that I want to feel better. > > >If I try to take it again within a few days then it doesn't work at all.> > > > > > > > About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I > > >probably had it since birth. I was given a CPAP but as soon as I started using > > >it I developed a bad sinus infection. Then I

started developing Samter symptoms. > > >This means that I have had a stuffy nose the whole time and have not been able > > >to use a CPAP.> > > > > > > > I have asked the doctors about other medications and they have said there > > >isn't anything. I have asked about aspirin desen. and none of them have been > > >willing to refer me. At my last ENT visit he said my polyps were "impressive" > > >and told me to just let him know when I'm ready for the next surgery. Even if I > > >wanted another surgery I can't because I'm still not done paying for the last > > >one.> > > > > > > > I want to breathe, I want to smell, I want to excersize, I want to be pain > > >free, I want to sleep soundly, I want to feel awake during the day, I want to be > > >able to go places, I want to be

able to have a glass of wine........ I want to > > >live.> > > > > > > >> > >> >>

[Guest guest]

Hang in there Mindi,

I completely understand your situation... it is very frustrating. I too had alot of the same symptoms that you described. It took a long time to set up and get approved but going through aspirin desensitization is the best thing I have done to control my samters. Don't get me wrong... in my case it by no means solved all my problems... I still use Advair (generic from Canada Drug) and generic nasonex but only in half doses. I still do not have a sense of smell but the days of a constantly runny nose and multiple yearly sinus infections are behind me. I can eat and drink almost anything I want without any of the old symptoms. I strongly suggest you try very hard to find someone willing to desensitize you.

Hope this helps.

Pete

From: Bannister <beckyb256@...>Subject: Re: Re: Frustrated and feeling hopelesssamters Date: Thursday, July 7, 2011, 9:43 AM

He he! I quite like having a dose named after me ;-)

Becky

From: "ChartacJS@..." <ChartacJS@...>samters Sent: Thu, 7 July, 2011 15:06:04Subject: Re: Re: Frustrated and feeling hopeless

I have talked to my doctor to have enough prescribed for me. It needs a prescription here in the US too. The "Becky" dose is lower than normal but it is very effective. The "Becky" dose is a total of 175mg. The heavier dose that my doctor has prescribed for when I was really sick is in the region of 360mg to 600mg. Definitely this is a subject for dialogue with your doctor.

Re: Frustrated and feeling hopeless

and ,I am surprised you are able to use pred so often as my GP would not let me use it this often and it is prescription only in the UK.Are you being prescribed the drug by your doctors or can it be bought without prescription in other countries?> > > > > > > I have had Samters for about 15 years. I am 39. I have seen many different > > >doctors but my Samters has always been out of control. I have had 5 sinus > > >surgeries.> > > > > > > > I am always stuffy, with no sense of smell, varying amounts of sinus pain, > > >and constant need of my albulteral inhaler. > > >> > > >

> > > > I blow my nose at least 50 times a day. I have to have tissues everywhere I > > >go. When I go out to a restaurant I can't even make it though a meal without > > >having to excuse myself to go blow my nose. With a stuffy nose it is hard to > > >make business calls. Sometimes I have a hard time saying my own name, Mindi, > > >because of the letter combination. (Go ahead an hold your nose and try to say it > > > ) > > >> > > > > > > > I also have to carry my inhaler because I have to take it at least once on > > >most days. I am careful not to exert myself because even carying a simple bag of > > >groceries up the stairs will cause me to have an asthma attack.> > > > > > > > I currently take Advair and a generic substition for Nasonex. I have tried > >

>Singulair in the past but it didn't help and just me sleepy the next day. I > > >tried it twice and each time only tried it for a week. After reading the other > > >posts it sounds like I might have stopped it to early. I would try it again if > > >it didn't make me so tired.> > > > > > > > The only time I get any relief is when I take a Prednisone boost. Sometimes > > >after a week of taking it I will even get my sense of smell back for a few > > >hours. My sinuses and asthma are better for a week or two. The doctor will only > > >give me one Prednisone boost a year unless it is an emergency.> > > > > > > > Claritin D helps with the stuffiness. But only if I haven't taken it for > > >awhile. I have to decide which day during that week that I want to feel better. > > >If I try to take

it again within a few days then it doesn't work at all.> > > > > > > > About 15 years ago I was diagnosed with Sleep Apnea and the doctors believe I > > >probably had it since birth. I was given a CPAP but as soon as I started using > > >it I developed a bad sinus infection. Then I started developing Samter symptoms. > > >This means that I have had a stuffy nose the whole time and have not been able > > >to use a CPAP.> > > > > > > > I have asked the doctors about other medications and they have said there > > >isn't anything. I have asked about aspirin desen. and none of them have been > > >willing to refer me. At my last ENT visit he said my polyps were "impressive" > > >and told me to just let him know when I'm ready for the next surgery. Even if I > > >wanted another surgery I can't

because I'm still not done paying for the last > > >one.> > > > > > > > I want to breathe, I want to smell, I want to excersize, I want to be pain > > >free, I want to sleep soundly, I want to feel awake during the day, I want to be > > >able to go places, I want to be able to have a glass of wine........ I want to > > >live.> > > > > > > >> > >> >>

[Guest guest]



The prednisone burst used by Becky is similar to what I would use, but the last time instead of stopping at Day 8 I continued to alternate a daily dosage of 5mg and 10mg. in order to sustain the polyp reduction. I've been using this alternating daily dosage for about two and a half years now with good results. From my Internet research this method seemed to be safer on our system than going through three bursts per year. However this method may not be recommend for women because their bodies react differently to prednisone than men. One study that influenced my decision to take this approach found that, in general, a man's system could easily tolerate 7.5mg of prednisone a day.

Re: Frustrated and feeling hopeless

Hello ,could you say what your dose of pred is?My GP will not prescribe me a burst (40mg per day for 5 days)more than three times a year.A burst like this would give me my SOS for about 4 weeks

[Guest guest]

, Have you had a bone density scan in the last two and a half years?  I would think that taking such a massive amount of steroids for a concentrated period of time would result in osteoporosis or osteopenia. Tom Schultz From: samters [mailto:samters ] On Behalf Of EkrenSent: Thursday, July 07, 2011 2:40 PMsamters Subject: RE: Re: Frustrated and feeling hopeless  The prednisone burst used by Becky is similar to what I would use, but the last time instead of stopping at Day 8 I continued to alternate a daily dosage of 5mg and 10mg. in order to sustain the polyp reduction. I've been using this alternating daily dosage for about two and a half years now with good results. From my Internet research this method seemed to be safer on our system than going through three bursts per year. However this method may not be recommend for women because their bodies react differently to prednisone than men. One study that influenced my decision to take this approach found that, in general, a man's system could easily tolerate 7.5mg of prednisone a day. Re: Frustrated and feeling hopeless Hello ,could you say what your dose of pred is?My GP will not prescribe me a burst (40mg per day for 5 days)more than three times a year.A burst like this would give me my SOS for about 4 weeks

[Guest guest]

Wow Mindi, my heart goes out to you - HUGS. That is a very hard road to travel

and it is only naturally that you feel depressed.

I felt much the same way from the age of 19 to my mid 40s when my symptoms

started to calm down. Could have been menopause, could have been a combination

of singulair and seretide, could have been me taking the disease more seriously

and changing a few things in my life, especially reducing the amount of 'normal'

stress I experience... who knows, I don't, and neither do my doctors. When I

stop taking the drugs the symptoms start to flare again. If I try to work more

than an hour or so a day they flare. If I stray from my low allergen environment

(even though I'm not allergic to anything other than aspirin) they flare.

I had to give up taking aspirin - kept needing different ops and the last time I

tried to desense I reacted so that was that.

Desense didn't seem to make much difference anyway and my polyps seem to be

growing at the same rate even taking singulair. Since starting the combo of

singulair and seretide though my asthma has finally come under control.

My theory is that inappropriate response to stress is the cause of the

inflammation which gives rise to samter symptoms. I am a LOT better since

removing as much stress as possible from my life (though depression is still a

huge issue). I am lucky - I don't need to work as my husband supports me and

health care is virtually free in Australia so we don't have money problems to

worry about. I don't socialise - a couple of days being with others and I start

to slide, the sinus, asthma, depression, tiredness and muscle weakness return.

It can really really hard chasing down and removing things which may be causing

the symptoms - a mind bending and frustrating journey. I did that for a couple

of decades and felt like I was going insane. There are SO MANY things that

trigger symptoms!!

This disease does have a debilitating affect on many of our lives. There is

little understanding or sympathy for it from friends, family and colleagues. On

my worst days people would even remark at how well I looked! That didn't help...

You are not on your own - you are not crazy - it is okay to be depressed and

miserable about this. I am very grateful for groups like this because reading

everyone's stories reminds me that I'm not alone, not the only one and that

sharing our stories does make it easier to handle, even if it is impossible to

nail this disease down, or find 'a' cure which will work. I think we're getting

closer though and more doctors are taking it seriously.

Beverley

[Guest guest]

Hey Beverly, thanks for this. You beautifully describe the negative effect this disease has, and the effort we put into trying to solve it. It is so helpful to hear other people's stories and how all of us are struggling to different degrees to find ways to deal. And how it is more difficult because it has no context for most of the world.Thanks all for the time spent contributing here -- it does help to know that others have to cope with the same issues.All the best,JoanOn Jul 7, 2011, at 6:00 PM, anaturallearner wrote:

Wow Mindi, my heart goes out to you - HUGS. That is a very hard road to travel and it is only naturally that you feel depressed.

I felt much the same way from the age of 19 to my mid 40s when my symptoms started to calm down. Could have been menopause, could have been a combination of singulair and seretide, could have been me taking the disease more seriously and changing a few things in my life, especially reducing the amount of 'normal' stress I experience... who knows, I don't, and neither do my doctors. When I stop taking the drugs the symptoms start to flare again. If I try to work more than an hour or so a day they flare. If I stray from my low allergen environment (even though I'm not allergic to anything other than aspirin) they flare.

I had to give up taking aspirin - kept needing different ops and the last time I tried to desense I reacted so that was that.

Desense didn't seem to make much difference anyway and my polyps seem to be growing at the same rate even taking singulair. Since starting the combo of singulair and seretide though my asthma has finally come under control.

My theory is that inappropriate response to stress is the cause of the inflammation which gives rise to samter symptoms. I am a LOT better since removing as much stress as possible from my life (though depression is still a huge issue). I am lucky - I don't need to work as my husband supports me and health care is virtually free in Australia so we don't have money problems to worry about. I don't socialise - a couple of days being with others and I start to slide, the sinus, asthma, depression, tiredness and muscle weakness return.

It can really really hard chasing down and removing things which may be causing the symptoms - a mind bending and frustrating journey. I did that for a couple of decades and felt like I was going insane. There are SO MANY things that trigger symptoms!!

This disease does have a debilitating affect on many of our lives. There is little understanding or sympathy for it from friends, family and colleagues. On my worst days people would even remark at how well I looked! That didn't help...

You are not on your own - you are not crazy - it is okay to be depressed and miserable about this. I am very grateful for groups like this because reading everyone's stories reminds me that I'm not alone, not the only one and that sharing our stories does make it easier to handle, even if it is impossible to nail this disease down, or find 'a' cure which will work. I think we're getting closer though and more doctors are taking it seriously.

Beverley

[Guest guest]



I had a bone density test in 2010 and it showed that I have the bone density of a thirty year old. I'm 59 so for once I had some good news from one of my many tests. I've been using prednisone on and off since 1992 so I was somewhat surprised by the good results.

Re: Frustrated and feeling hopeless

Hello ,could you say what your dose of pred is?My GP will not prescribe me a burst (40mg per day for 5 days)more than three times a year.A burst like this would give me my SOS for about 4 weeks

[Guest guest]

I was on prednisone for 34 years (have been off totally for 4 years) and bone density is fine so far.Billie Ford msbfford@... ""Real power is the ability to pause between stimulus and response, and in that pause, choose." Rollo MayFrom:

Ekren <ekren@...>Subject: RE: Re: Frustrated and feeling hopelesssamters Date: Friday, July 8, 2011, 9:05 AM



I had a bone density test in 2010 and it showed that I have the bone density of a thirty year old. I'm 59 so for once I had some good news from one of my many tests. I've been using prednisone on and off since 1992 so I was somewhat surprised by the good results.

Re: Frustrated and feeling hopeless

Hello ,could you say what your dose of pred is?My GP will not prescribe me a burst (40mg per day for 5 days)more than three times a year.A burst like this would give me my SOS for about 4 weeks

[Guest guest]

Same for me. I've been using prednisone since 86. My last bone density scan made the doctor smile big time to see that I had virtually no bone loss according to him. I wonder how that happens?CrusherFrom: Ekren <ekren@...>samters Sent: Friday, July 8, 2011 9:05 AMSubject:

RE: Re: Frustrated and feeling hopeless



I had a bone density test in 2010 and it showed that I have the bone density of a thirty year old. I'm 59 so for once I had some good news from one of my many tests. I've been using prednisone on and off since 1992 so I was somewhat surprised by the good results.

Re: Frustrated and feeling hopeless

Hello ,could you say what your dose of pred is?My GP will not prescribe me a burst (40mg per day for 5 days)more than three times a year.A burst like this would give me my SOS for about 4 weeks