Re: Re: I am out of control.

[Guest guest]

Been there, done that. I am not so bad now since I'm doing the meds I'm on now. Advair, Singulair,Flonase, and antihistamines when I need them. My rescue inhaler is Combivent. I have

Bronchiestatis.

Several years ago I was going through inhalers like a crazy person because I had a doctor who liked to make me think I was a hypochondriac instead of trying to really help me and find out why I was in such bad shape. I was in the ER all the time. After changing doctors many times and being seen by a specialist who told me I had Samters I started getting some better treatment. Found some good doctors who tried to help me find a combination that worked for me. I also think I am better at figuring out when I need to do something different. I avoid things I know will set me off etc.

Evie

-- Re: I am out of control.

We just moved here, so I'm not used to the cold and the dry. I'm usedthe the warm and humid. In the 10 or more years I've been dealingwith this crap I've seen the ER many many times. If I was back home Iwouldn't mind, they had a file on me. They didn't try to take x-raysand other stuff. They did the good old Treat and Street with a Pulmfollow up. Now I have this freaking HMO and I'm worried about beingin a new ER with a new Doc. What's amazing to me is that I used up an entire inhaler in less than2 weeks and didn't even bat an eye at it. > > > I guess I didn't notice the spiral. I don't know what the hell is> > going on. I have an appt with my new PCP on Friday. I might be> > seeing the ER before then.> > > > I went to refill my rescue inhaler yesterday. I've done it a million> > and 1 times before. The Pharmacy tech said "It's only been 15 days> > since you last refilled this." WHAT! I used an entire inhaler in 15> > days. How the hell did I manage that and not notice.> > > > Looking back I can see that yes I have in deed been over using. I> > didn't realize just how much.> > > > I think it might be the cold dry air.> > > > > > > > > >

[Guest guest]

,

One thing you could try that is simple is to always breath through a scarf

when outside in the cold. Herbal teas help because you are breathing in

steam. Sometimes when I was desperate I would go into the shower, just for

the steam.

I double up on the flonase when I'm congested. It will increase the

systemic dose, but not much compared to prednisone.

One great breakthrough was taking aciphex. I doubted that acid reflux was

my problem because I didn't taste it or feel the burn. My allergist

convinced me to try anyway and wow. I sleep through the night every night

now.

I had no success with singulair either.

What dose of advair are you on. Maybe your doctor will put you up to

500/50. Personally, I don't respond to the salmeterol side of it. So, I'm

on Pulmicort, which I can double if I need to.

Keep searching,

Pam

On 1/16/08 6:03 PM, " tffnysnvl " <tffnysnvl@...> wrote:

> I use advair diskus and that's about it. I have no flow through my

> left nostril at all, not even with a prednisone burst. I was trying

> to do a daily sinus rinse but all that netted me was an increase in

> ear pain and infections. I do use flonase, but it doesn't seem to do

> anything. I use it anyway because I paid for it, but eh.

>

> I've tried lukotriene modifier with no success. There was no

> improvement in my symptoms at all.

>

> I've kept journals of foods, activities, and what not. My old pulm

> and I tried and tried to find a trigger and there isn't anything that

> we could find. I've been allergy tested at least 3 times on my back,

> once on my arm, and the blood draw. I'm allergic to tree pollen and

> horses.

>

> I have never experienced a long term flare. Usually I go from

> breathing just fine to the ER. Dr. S and I couldn't ever really find

> a reason for that either. I was faithful to the peak flo for years,

> but it never revealed when things were going south.

>

> I just spent 7 years with the same pulm and we've never been able to

> fully control the asthma. Even at my best my FEV1 was 92% which is

> good. My O2 hovers in the 89-90 range.

>

> I loved that pulm. He knew exactly what I had when I first walked

> into his office. I wasn't the 1st patient he'd seen with sampters. He

> and I set right to work trying to figure out how to get me well.

>

> I'm pretty sure the trigger here is the dry cold. I did a prednisone

> burst in Nov for an acute flare as per my normal routine. I'd like to

> not go on another one if I can avoid it.

>

> I'm used to the every 6 months or so ER visit. This prolonged flare

> is new to me.

>

>

>>

>> , sorry to hear about your downwards spiral.

>>

>> Flare-ups are very common with Samters, and they can be caused from a

>> variety of things. I would suggest in the future keeping a journal

>> to see if something in particular might have triggered this, since as

>> your diet over the holidays. It could be any number of things, or it

>> could be something that is not identifiable and you may need a burst

>> of steroids.

>>

>> I keep a detailed medical journal that has really helped me to note

>> my observations on triggers for asthma, triggers for polyps, and

>> lessen them. I also keep a medication log on a children's chore

>> calendar so I know when I have taken my meds. You can die from

>> overdose of albuterol inhalers, so it's not a mild issue.

>>

>> I was very very sick for several years until 1995 -- rescue inhalers

>> didn't even work. I was on a nebulizer treatment four times a day

>> plus 50 milligrams and up daily of steroids and I was still very

>> sick. In addition to aspirin desensitization there were many things

>> I did to improve my health and I don't even have a rescue inhaler on

>> hand anymore because I never need it.

>>

>> Do you use a steroid inhaler and long-acting inhaler such as

>> salmeterol (one of the components of Advair)? How about a

>> leukotriene modifier?

>>

>> Good luck! Hope you start to feel better soon. Be careful with tht

>> rescue inhaler!

>>

>> Lori

>>

>

>

>

>

>

>

[Guest guest]

I have to agree with the scarf idea. I never go out in really cold temps without a scarf around my face because really cold air instantly sets off my asthma.

Evie

-- Re: Re: I am out of control.

,One thing you could try that is simple is to always breath through a scarfwhen outside in the cold. Herbal teas help because you are breathing insteam. Sometimes when I was desperate I would go into the shower, just forthe steam.I double up on the flonase when I'm congested. It will increase thesystemic dose, but not much compared to prednisone.One great breakthrough was taking aciphex. I doubted that acid reflux wasmy problem because I didn't taste it or feel the burn. My allergistconvinced me to try anyway and wow. I sleep through the night every nightnow.I had no success with singulair either.What dose of advair are you on. Maybe your doctor will put you up to500/50. Personally, I don't respond to the salmeterol side of it. So, I'mon Pulmicort, which I can double if I need to.Keep searching,PamOn 1/16/08 6:03 PM, "tffnysnvl" <tffnysnvl > wrote:> I use advair diskus and that's about it. I have no flow through my> left nostril at all, not even with a prednisone burst. I was trying> to do a daily sinus rinse but all that netted me was an increase in> ear pain and infections. I do use flonase, but it doesn't seem to do> anything. I use it anyway because I paid for it, but eh.> > I've tried lukotriene modifier with no success. There was no> improvement in my symptoms at all.> > I've kept journals of foods, activities, and what not. My old pulm> and I tried and tried to find a trigger and there isn't anything that> we could find. I've been allergy tested at least 3 times on my back,> once on my arm, and the blood draw. I'm allergic to tree pollen and> horses. > > I have never experienced a long term flare. Usually I go from> breathing just fine to the ER. Dr. S and I couldn't ever really find> a reason for that either. I was faithful to the peak flo for years,> but it never revealed when things were going south.> > I just spent 7 years with the same pulm and we've never been able to> fully control the asthma. Even at my best my FEV1 was 92% which is> good. My O2 hovers in the 89-90 range.> > I loved that pulm. He knew exactly what I had when I first walked> into his office. I wasn't the 1st patient he'd seen with sampters. He> and I set right to work trying to figure out how to get me well.> > I'm pretty sure the trigger here is the dry cold. I did a prednisone> burst in Nov for an acute flare as per my normal routine. I'd like to> not go on another one if I can avoid it.> > I'm used to the every 6 months or so ER visit. This prolonged flare> is new to me. > > >> >> , sorry to hear about your downwards spiral.>> >> Flare-ups are very common with Samters, and they can be caused from a>> variety of things. I would suggest in the future keeping a journal>> to see if something in particular might have triggered this, since as>> your diet over the holidays. It could be any number of things, or it>> could be something that is not identifiable and you may need a burst>> of steroids.>> >> I keep a detailed medical journal that has really helped me to note>> my observations on triggers for asthma, triggers for polyps, and>> lessen them. I also keep a medication log on a children's chore>> calendar so I know when I have taken my meds. You can die from>> overdose of albuterol inhalers, so it's not a mild issue.>> >> I was very very sick for several years until 1995 -- rescue inhalers>> didn't even work. I was on a nebulizer treatment four times a day>> plus 50 milligrams and up daily of steroids and I was still very>> sick. In addition to aspirin desensitization there were many things>> I did to improve my health and I don't even have a rescue inhaler on>> hand anymore because I never need it.>> >> Do you use a steroid inhaler and long-acting inhaler such as>> salmeterol (one of the components of Advair)? How about a>> leukotriene modifier?>> >> Good luck! Hope you start to feel better soon. Be careful with tht>> rescue inhaler! >> >> Lori>> > > > > > >

[Guest guest]

Something I have forgot to ask on this forum for ages is; does anyone get relieve from taking regular sauna's. I haven't had a sauna for years but I remember it unblocked my nose whilst being in the sauna but soon after leaving clogged up again. I am thinking that maybe with regular irrigation, everyones new assortment of drugs and diet regime not forgetting some Aspirin desensitized sufferer's we might achieve some extra relieve.Comments please..On my diy desense I have noticed a slight difference in my breathing yesterday and today. Re: I am out of control.

I use advair diskus and that's about it. I have no flow through my

left nostril at all, not even with a prednisone burst. I was trying

to do a daily sinus rinse but all that netted me was an increase in

ear pain and infections. I do use flonase, but it doesn't seem to do

anything. I use it anyway because I paid for it, but eh.

I've tried lukotriene modifier with no success. There was no

improvement in my symptoms at all.

I've kept journals of foods, activities, and what not. My old pulm

and I tried and tried to find a trigger and there isn't anything that

we could find. I've been allergy tested at least 3 times on my back,

once on my arm, and the blood draw. I'm allergic to tree pollen and

horses.

I have never experienced a long term flare. Usually I go from

breathing just fine to the ER. Dr. S and I couldn't ever really find

a reason for that either. I was faithful to the peak flo for years,

but it never revealed when things were going south.

I just spent 7 years with the same pulm and we've never been able to

fully control the asthma. Even at my best my FEV1 was 92% which is

good. My O2 hovers in the 89-90 range.

I loved that pulm. He knew exactly what I had when I first walked

into his office. I wasn't the 1st patient he'd seen with sampters. He

and I set right to work trying to figure out how to get me well.

I'm pretty sure the trigger here is the dry cold. I did a prednisone

burst in Nov for an acute flare as per my normal routine. I'd like to

not go on another one if I can avoid it.

I'm used to the every 6 months or so ER visit. This prolonged flare

is new to me.

>

> , sorry to hear about your downwards spiral.

>

> Flare-ups are very common with Samters, and they can be caused from a

> variety of things. I would suggest in the future keeping a journal

> to see if something in particular might have triggered this, since as

> your diet over the holidays. It could be any number of things, or it

> could be something that is not identifiable and you may need a burst

> of steroids.

>

> I keep a detailed medical journal that has really helped me to note

> my observations on triggers for asthma, triggers for polyps, and

> lessen them. I also keep a medication log on a children's chore

> calendar so I know when I have taken my meds. You can die from

> overdose of albuterol inhalers, so it's not a mild issue.

>

> I was very very sick for several years until 1995 -- rescue inhalers

> didn't even work. I was on a nebulizer treatment four times a day

> plus 50 milligrams and up daily of steroids and I was still very

> sick. In addition to aspirin desensitization there were many things

> I did to improve my health and I don't even have a rescue inhaler on

> hand anymore because I never need it.

>

> Do you use a steroid inhaler and long-acting inhaler such as

> salmeterol (one of the components of Advair)? How about a

> leukotriene modifier?

>

> Good luck! Hope you start to feel better soon. Be careful with tht

> rescue inhaler!

>

> Lori

>

Sent from - a smarter inbox.

[Guest guest]

Steam blocks my sinuses. Stefano Henriko <skunkburner@...> wrote: Something I have forgot to ask on this forum for ages is; does anyone get relieve from taking regular sauna's. I haven't had a sauna for years but I remember it unblocked my nose whilst being in the sauna but soon after leaving clogged up again. I am thinking that maybe with regular irrigation, everyones new

assortment of drugs and diet regime not forgetting some Aspirin desensitized sufferer's we might achieve some extra relieve.Comments please..On my diy desense I have noticed a slight difference in my breathing yesterday and today. Re: I am out of control. I use advair diskus and that's about it. I have no flow through myleft nostril at all, not even with a prednisone burst. I was tryingto do a daily sinus rinse but all that netted me was an increase inear pain and infections. I do use flonase, but it doesn't seem to doanything. I use it anyway because I paid for it, but eh. I've tried

lukotriene modifier with no success. There was noimprovement in my symptoms at all. I've kept journals of foods, activities, and what not. My old pulmand I tried and tried to find a trigger and there isn't anything thatwe could find. I've been allergy tested at least 3 times on my back,once on my arm, and the blood draw. I'm allergic to tree pollen andhorses. I have never experienced a long term flare. Usually I go frombreathing just fine to the ER. Dr. S and I couldn't ever really finda reason for that either. I was faithful to the peak flo for years,but it never revealed when things were going south. I just spent 7 years with the same pulm and we've never been able tofully control the asthma. Even at my best my FEV1 was 92% which isgood. My O2 hovers in the 89-90 range. I loved that pulm. He knew exactly what I had when I first walkedinto his office. I wasn't the 1st patient he'd seen with

sampters. Heand I set right to work trying to figure out how to get me well. I'm pretty sure the trigger here is the dry cold. I did a prednisoneburst in Nov for an acute flare as per my normal routine. I'd like tonot go on another one if I can avoid it. I'm used to the every 6 months or so ER visit. This prolonged flareis new to me. >> , sorry to hear about your downwards spiral.> > Flare-ups are very common with Samters, and they can be caused from a > variety of things. I would suggest in the future keeping a journal > to see if something in particular might have triggered this, since as > your diet over the holidays. It could be any number of things, or it > could be something that is

not identifiable and you may need a burst > of steroids.> > I keep a detailed medical journal that has really helped me to note > my observations on triggers for asthma, triggers for polyps, and > lessen them. I also keep a medication log on a children's chore > calendar so I know when I have taken my meds. You can die from > overdose of albuterol inhalers, so it's not a mild issue.> > I was very very sick for several years until 1995 -- rescue inhalers > didn't even work. I was on a nebulizer treatment four times a day > plus 50 milligrams and up daily of steroids and I was still very > sick. In addition to aspirin desensitization there were many things > I did to improve my health and I don't even have a rescue inhaler on > hand anymore because I never need it. > > Do you use a steroid inhaler and long-acting inhaler such as > salmeterol (one of the

components of Advair)? How about a > leukotriene modifier?> > Good luck! Hope you start to feel better soon. Be careful with tht > rescue inhaler! > > Lori> Sent from - a smarter inbox.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

What is the dosage regimen you use for prednisone burst?

Re: I am out of control.

I use advair diskus and that's about it. I have no flow through myleft nostril at all, not even with a prednisone burst. I was tryingto do a daily sinus rinse but all that netted me was an increase inear pain and infections. I do use flonase, but it doesn't seem to doanything. I use it anyway because I paid for it, but eh. I've tried lukotriene modifier with no success. There was noimprovement in my symptoms at all. I've kept journals of foods, activities, and what not. My old pulmand I tried and tried to find a trigger and there isn't anything thatwe could find. I've been allergy tested at least 3 times on my back,once on my arm, and the blood draw. I'm allergic to tree pollen andhorses. I have never experienced a long term flare. Usually I go frombreathing just fine to the ER. Dr. S and I couldn't ever really finda reason for that either. I was faithful to the peak flo for years,but it never revealed when things were going south. I just spent 7 years with the same pulm and we've never been able tofully control the asthma. Even at my best my FEV1 was 92% which isgood. My O2 hovers in the 89-90 range. I loved that pulm. He knew exactly what I had when I first walkedinto his office. I wasn't the 1st patient he'd seen with sampters. Heand I set right to work trying to figure out how to get me well. I'm pretty sure the trigger here is the dry cold. I did a prednisoneburst in Nov for an acute flare as per my normal routine. I'd like tonot go on another one if I can avoid it. I'm used to the every 6 months or so ER visit. This prolonged flareis new to me. >> , sorry to hear about your downwards spiral.> > Flare-ups are very common with Samters, and they can be caused from a > variety of things. I would suggest in the future keeping a journal > to see if something in particular might have triggered this, since as > your diet over the holidays. It could be any number of things, or it > could be something that is not identifiable and you may need a burst > of steroids.> > I keep a detailed medical journal that has really helped me to note > my observations on triggers for asthma, triggers for polyps, and > lessen them. I also keep a medication log on a children's chore > calendar so I know when I have taken my meds. You can die from > overdose of albuterol inhalers, so it's not a mild issue.> > I was very very sick for several years until 1995 -- rescue inhalers > didn't even work. I was on a nebulizer treatment four times a day > plus 50 milligrams and up daily of steroids and I was still very > sick. In addition to aspirin desensitization there were many things > I did to improve my health and I don't even have a rescue inhaler on > hand anymore because I never need it. > > Do you use a steroid inhaler and long-acting inhaler such as > salmeterol (one of the components of Advair)? How about a > leukotriene modifier?> > Good luck! Hope you start to feel better soon. Be careful with tht > rescue inhaler! > > Lori>

[Guest guest]

I can't speak for a 40mg dose.

The dose pack I have starts at 60mg for the first 4 days then decreases to 40mg for the next 4 days then decreases to 20mg for the last 4 days. You could probably extrapolate from these numbers though. This is pretty typical for most dose packs as far as the taper is concerned.

Maybe 40mg for 4 days 20mg for 4 days then 10mg for the last four days. It depends on how much you have and how long the Doc wanted you to take it for.

The Doctor can prescribe a dose pack that is sectioned off in days like mine.

Marcus

[Guest guest]

When you start with a 40 mg. dose how is your daily decrease 5 or 10 mg. daily?

I don't know any pulmonologists or allergists in Reno. I'll check with my doc, Chase, in Truckee and see if he can recommend someone.

Re: I am out of control.

Depends on who's doing the prescribing. If I get it from the ER it'salmost alway a 40mg taper. I always get a salumedrol push in the ERIf I get it from the pulm it depends on what my FEV1 score was. I'vestarted with as much as 120mg a day. Which brings me to a question for you. Do you see a pulm in Reno or inTruckee? I just moved to the area, I have no pulm local to me. I amgoing to have to drive to Reno. Anyone you know of over there? >> What is the dosage regimen you use for prednisone burst?> ----- Original Message ----- 6

[Guest guest]

Thanks. This is helpful.

Carl

Re: Re: I am out of control.

I can't speak for a 40mg dose. The dose pack I have starts at 60mg for the first 4 days then decreases to 40mg for the next 4 days then decreases to 20mg for the last 4 days. You could probably extrapolate from these numbers though. This is pretty typical for most dose packs as far as the taper is concerned.Maybe 40mg for 4 days 20mg for 4 days then 10mg for the last four days. It depends on how much you have and how long the Doc wanted you to take it for. The Doctor can prescribe a dose pack that is sectioned off in days like mine.Marcus