Re: Calling all folks who have had aspirin desensitization.....

August 10, 2011

Hi,

It sounds as if you are on a way too small dose - one that is exaserpating your symptoms. I reacted horribly to 40mg dose, and was still reacting to 300mg (even when I was taking it for a few weeks my symptoms were flared, but as soon as I upped the dose again to 600mg I was fine - properly desensitized), but at a daily dose of 600mg I am fine with aspirin. Why are you on such a low maintenance dose?

Becky

From: hopefaithlove2006 <michellemdo@...>samters Sent: Wed, 10 August, 2011 18:12:36Subject: Calling all folks who have had aspirin desensitization.....

I began my process on July 28 2011. I am currently taking 40mg of baby aspirin.I am on Xolair, Zyflo, zyrtec, vitamin d, ranitidine and flovent.My doc suspected I would have some nasal congestion. That is to put it lightly. Since I started this process, My nasal polyp on left side has flared up....I have major congestion and post nasal drip....I am walking around with tissue to nose almost constantly. I am a stay at home mom/wife and sooooo grateful that I do not have to report to a job outside of the home in my current state. Ugh.As of today I am going on restrictive diet cutting out sugar, gluten and corn to help reduce any inflammation. I am also going back to swishing oils in my mouth for 15 minutes in the morning. (see oilpulling.com or earthclinic.com) Does anyone have any experiences to share what aspirin desens. was like for them?Thank you.

August 10, 2011

Who is doing your desensitization? This is not how it is done in the standard fashion at all. Please read old posts. But basically the usual procedure is, under medical supervision, to start with a minimal dose, and give you increasing doses until you cross a threshold. This can be terribly uncomfortable -- requiring outside assistance -- but once it is crossed there is no problem taking aspirin. After that a certain level is maintained -1300 mg/ day is standard, though too high for some. A certain level needs to be maintained in order to remain desensitized. The process of desensitizing is all done in the course of two days. I've never heard of anyone doing 40 mg as part of desensitization. On Aug 10, 2011, at 11:12 AM, hopefaithlove2006 wrote: I began my process on July 28 2011. I am currently taking 40mg of baby aspirin. I am on Xolair, Zyflo, zyrtec, vitamin d, ranitidine and flovent. My doc suspected I would have some nasal congestion. That is to put it lightly. Since I started this process, My nasal polyp on left side has flared up....I have major congestion and post nasal drip....I am walking around with tissue to nose almost constantly. I am a stay at home mom/wife and sooooo grateful that I do not have to report to a job outside of the home in my current state. Ugh. As of today I am going on restrictive diet cutting out sugar, gluten and corn to help reduce any inflammation. I am also going back to swishing oils in my mouth for 15 minutes in the morning. (see oilpulling.com or earthclinic.com) Does anyone have any experiences to share what aspirin desens. was like for them? Thank you.

August 10, 2011

Wow. This is all new to me. I had read on Internet about two day process and was wondering why I am doing it this way. I am taking half baby aspirin daily until next appt, on Aug 25. My doc wanted me get to one full baby aspirin at first appointment but then decided to keep me at half. I am supposed to got to full baby aspirin on the 25 but I do not know when she is going to increase me further.....maybe the same day? I will be there all day, again!I have found that after swishing the sesame oil this morning that my nasal inflammation has decreased enough that I can breathe fully thru my nose and no water dripping,,,,, I have call in to my docs office and waiting to hear back.Thank you for responding so quickly! I will look into older posts as well.

August 10, 2011

I had my desens done in two days . . . .about two weeks ago.

Started with 10 mgs, and at the end of the first day I was up to 100. Had a reaction at around 60 - sneezing a lot but no asthma, and that subsided, and next day I started where I left off and worked my way up to 625 with no problem. Now I am taking 625 twice a day until I see the doc next in a few days. Everything seems fine for the moment. I use 2 inhalers- Serevent and Flovent, Flonase, and the occasional antihistamine. Also a ton of supplements.

It's rather expensive to do it in two days because you have to be monitored for about 8-10 hours for each of the two days, but it seems to get the job done. Insurance is paying for most of it.

> samters > From: michellemdo@...> Date: Wed, 10 Aug 2011 17:12:36 +0000> Subject: Calling all folks who have had aspirin desensitization.....> > I began my process on July 28 2011. I am currently taking 40mg of baby aspirin.> > I am on Xolair, Zyflo, zyrtec, vitamin d, ranitidine and flovent.> > My doc suspected I would have some nasal congestion. That is to put it lightly. Since I started this process, My nasal polyp on left side has flared up....I have major congestion and post nasal drip....I am walking around with tissue to nose almost constantly. I am a stay at home mom/wife and sooooo grateful that I do not have to report to a job outside of the home in my current state. Ugh.> > As of today I am going on restrictive diet cutting out sugar, gluten and corn to help reduce any inflammation. I am also going back to swishing oils in my mouth for 15 minutes in the morning. (see oilpulling.com or earthclinic.com) > > Does anyone have any experiences to share what aspirin desens. was like for them?> > Thank you.> > > > ------------------------------------> >

August 10, 2011

BTW, I think the reason they do this process compressed in two days . . . is that when you are manipulating the immune system, which is what they are doing, it works much better if you keep increasing the dose in a short period of time, all the way to the maximum dose. The body adjusts.

I could never take the smallest dosage of aspirin before without having a full blown wheezing and sneezing attack and now I take 625 with no problem. Doesn't cease to amaze me.

> samters > From: michellemdo@...> Date: Wed, 10 Aug 2011 17:12:36 +0000> Subject: Calling all folks who have had aspirin desensitization.....> > I began my process on July 28 2011. I am currently taking 40mg of baby aspirin.> > I am on Xolair, Zyflo, zyrtec, vitamin d, ranitidine and flovent.> > My doc suspected I would have some nasal congestion. That is to put it lightly. Since I started this process, My nasal polyp on left side has flared up....I have major congestion and post nasal drip....I am walking around with tissue to nose almost constantly. I am a stay at home mom/wife and sooooo grateful that I do not have to report to a job outside of the home in my current state. Ugh.> > As of today I am going on restrictive diet cutting out sugar, gluten and corn to help reduce any inflammation. I am also going back to swishing oils in my mouth for 15 minutes in the morning. (see oilpulling.com or earthclinic.com) > > Does anyone have any experiences to share what aspirin desens. was like for them?> > Thank you.> > > > ------------------------------------> >

August 10, 2011

Agreed. Did mine at Scripps in late June over two days. If a physician is starting someone off at such a low dose they clearly don't understand rapid ASA desensitization. Go to Scripps or find a Dr. who knows what they are doing.As to was it worth it - I would say yes. My SOS has returned (somewhat) after no SOS for over 10 years. Symptoms seems a little better (my issue was mainly polyps / sinus infections; asthma always well controlled) but still have to rinse 1x-2x daily to keep the gunk out. I am told one does not really see all of the desense benefit(s) until about 90 days in.From:

<skydancer1@...>Subject: RE: Calling all folks who have had aspirin desensitization.....samters Date: Wednesday, August 10, 2011, 4:52 PM

I had my desens done in two days . . . .about two weeks ago.

Started with 10 mgs, and at the end of the first day I was up to 100. Had a reaction at around 60 - sneezing a lot but no asthma, and that subsided, and next day I started where I left off and worked my way up to 625 with no problem. Now I am taking 625 twice a day until I see the doc next in a few days. Everything seems fine for the moment. I use 2 inhalers- Serevent and Flovent, Flonase, and the occasional antihistamine. Also a ton of supplements.

It's rather expensive to do it in two days because you have to be monitored for about 8-10 hours for each of the two days, but it seems to get the job done. Insurance is paying for most of it.

> samters > From: michellemdo@...> Date: Wed, 10 Aug 2011 17:12:36 +0000> Subject: Calling all folks who have had aspirin desensitization.....> > I began my process on July 28 2011. I am currently taking 40mg of baby aspirin.> > I am on Xolair, Zyflo, zyrtec, vitamin d, ranitidine and flovent.> > My doc suspected I would have some nasal congestion. That is to put it lightly. Since I started this process, My nasal polyp on left side has flared up....I have major congestion and post nasal drip....I am walking around with tissue to nose almost constantly. I am a stay at home mom/wife and sooooo grateful that I do not have to report to a job outside of the home in my current state. Ugh.> > As of today I am going on restrictive diet cutting out sugar, gluten and corn to help reduce any inflammation. I am also going back to swishing oils in my

mouth for 15 minutes in the morning. (see oilpulling.com or earthclinic.com) > > Does anyone have any experiences to share what aspirin desens. was like for them?> > Thank you.> > > > ------------------------------------> >

August 10, 2011

> Agreed. Did mine at Scripps in late June over two days. If a physician is

> starting someone off at such a low dose they clearly don't understand rapid

> ASA desensitization. Go to Scripps or find a Dr. who knows what they are

> doing.

>

It's not the starting at a low dose (which is a good thing safety-wise) that

demonstrates the ignorance of the doctor (like most doctors re Samters), it

is repeating the low dose whatever number of times -- it serves no purpose

to repeat a dose that does not trigger the reaction -- you need to

continually increment to get to, and then through, the reaction to realize

desensitization.

August 11, 2011

After 15 days of 40mg of aspirin and very little sleep, my husband and I both agreed that I am going to try something different before I try this process of desens. If I do choose aspirin desens. it will be with clinic who does it in two days.I respect my allergist and admire her willingness to attempt this process for her patients but I do not think that is best way for me to go. I am going to focus on sals diet and eliminating other foods I am allergic to for the next 6 months and allow my body time to heal and rebuild strength. Doing this while I am on Xolair should be a good combo for achieving my goal. Not to mention, the hubby is supporting me 100 percent so it's ALL good.Thank you folks for sharing your experiences!!! =)

August 11, 2011

I really think that you shouldn't consider what you were doing anything to do with desens. As you have read the posts, desens is a totally different process, and does not have any of the results -- ie increased stuffiness etc. you have had. Just saying -- what you have tried is not desens and so should not be judged as such.On Aug 11, 2011, at 7:32 PM, M Do wrote: After 15 days of 40mg of aspirin and very little sleep, my husband and I both agreed that I am going to try something different before I try this process of desens. If I do choose aspirin desens. it will be with clinic who does it in two days.I respect my allergist and admire her willingness to attempt this process for her patients but I do not think that is best way for me to go. I am going to focus on sals diet and eliminating other foods I am allergic to for the next 6 months and allow my body time to heal and rebuild strength. Doing this while I am on Xolair should be a good combo for achieving my goal. Not to mention, the hubby is supporting me 100 percent so it's ALL good.Thank you folks for sharing your experiences!!! =)

August 12, 2011

Hi ,

I agree with Joan - you have not been doing desense. My Dr desensitises people slowly, but only leaves 1 week between upping doses, so the first week i was on 40mg, the second 75mg, the 3rd 300mg, the 4th 450mg and finally after 5 weeks I was on 600mg when I didn't react. This was painfully slow and I had all the symptoms you describe, because we are hitting our bodies with doses we react badly to. But if you go up and beyond these doses, you suddenly feel better. BUT don't go suddenly to 600mg as you'll have the most horrible reaction. It has to be done gradually in little steps, but preferably quick little steps! And with medical help so you can be carefully looked after while you react.

Best wishes

Becky

From: Joan Harvey <thomyris7@...>samters Sent: Fri, 12 August, 2011 4:36:40Subject: Re: Calling all folks who have had aspirin desensitization.....

I really think that you shouldn't consider what you were doing anything to do with desens. As you have read the posts, desens is a totally different process, and does not have any of the results -- ie increased stuffiness etc. you have had. Just saying -- what you have tried is not desens and so should not be judged as such.

On Aug 11, 2011, at 7:32 PM, M Do wrote:

After 15 days of 40mg of aspirin and very little sleep, my husband and I both agreed that I am going to try something different before I try this process of desens. If I do choose aspirin desens. it will be with clinic who does it in two days.I respect my allergist and admire her willingness to attempt this process for her patients but I do not think that is best way for me to go. I am going to focus on sals diet and eliminating other foods I am allergic to for the next 6 months and allow my body time to heal and rebuild strength. Doing this while I am on Xolair should be a good combo for achieving my goal. Not to mention, the hubby is supporting me 100 percent so it's ALL good.Thank you folks for sharing your experiences!!! =)

August 12, 2011

Hi all

Yes my desense was undertaken with liquid aspirin dropped into my nose and the initial phase was a progressive dose increased about each 90 minutes on one day under medical supervision and then gradually upped at home with the consultants mobile number to hand just in case. I am on about 100mg of aspirin each day now but a much lower dose applies when it is liguid directly into nose rather than taken by mouth.

Regards

Mike

samters From: beckyb256@...Date: Fri, 12 Aug 2011 09:17:18 +0100Subject: Re: Calling all folks who have had aspirin desensitization.....

Hi ,

I agree with Joan - you have not been doing desense. My Dr desensitises people slowly, but only leaves 1 week between upping doses, so the first week i was on 40mg, the second 75mg, the 3rd 300mg, the 4th 450mg and finally after 5 weeks I was on 600mg when I didn't react. This was painfully slow and I had all the symptoms you describe, because we are hitting our bodies with doses we react badly to. But if you go up and beyond these doses, you suddenly feel better. BUT don't go suddenly to 600mg as you'll have the most horrible reaction. It has to be done gradually in little steps, but preferably quick little steps! And with medical help so you can be carefully looked after while you react.

Best wishes

Becky

From: Joan Harvey <thomyris7@...>samters Sent: Fri, 12 August, 2011 4:36:40Subject: Re: Calling all folks who have had aspirin desensitization.....

I really think that you shouldn't consider what you were doing anything to do with desens. As you have read the posts, desens is a totally different process, and does not have any of the results -- ie increased stuffiness etc. you have had. Just saying -- what you have tried is not desens and so should not be judged as such.

On Aug 11, 2011, at 7:32 PM, M Do wrote:

After 15 days of 40mg of aspirin and very little sleep, my husband and I both agreed that I am going to try something different before I try this process of desens. If I do choose aspirin desens. it will be with clinic who does it in two days.I respect my allergist and admire her willingness to attempt this process for her patients but I do not think that is best way for me to go. I am going to focus on sals diet and eliminating other foods I am allergic to for the next 6 months and allow my body time to heal and rebuild strength. Doing this while I am on Xolair should be a good combo for achieving my goal. Not to mention, the hubby is supporting me 100 percent so it's ALL good.Thank you folks for sharing your experiences!!! =)

August 12, 2011

Hi Becky,Thank you for that information. That is slower than 2 days, but MUCH better than waiting FOUR weeks before being upped a level. When the nurse called me back, she implied that I had to be willing to endure some suffering. OMG. I promptly told her I had NO PROBLEM enduring SOME suffering if there was A FREAKIN PURPOSE. Taking the same dose for FOUR weeks serves no purpose other than make my life and in turn, my family's life MISERABLE!!! The nerve of her!When I see my doc (whom is 2 hours away from home) on Aug 25th, I will ask her if she is willing to do the weekly thing, like you described. If she is, I may reconsider. If I can see some light at the end of the tunnel, I am willing to go thru it.....but at the rate she had me going, I could NOT see living like this for FOUR months!!! omg!! I stopped

taking the aspirin today and hopefully I am recovered soon. Thank you again for sharing your info. =)

After 15 days of 40mg of aspirin and very little sleep, my husband and I both agreed that I am going to try something different before I try this process of desens. If I do choose aspirin desens. it will be with clinic who does it in two days.I respect my allergist and admire her willingness to attempt this process for her patients but I do not think that is best way for me to go. I am going to focus on sals diet and eliminating other foods I am allergic to for the next 6 months and allow my body time to heal and rebuild strength. Doing this while I am on Xolair should be a good combo for achieving my goal. Not to mention, the hubby is supporting me 100 percent so it's ALL good.Thank you folks for sharing your experiences!!! =)

August 12, 2011

If you are OK with " some suffering " , then,

assemble your puffers and anti-histimines and whatever,

and have someone at hand in case you need assistance or a drive to the

hosptial,

and do it yourself in a day or 2, as have several others here.

What your doctor has you doing is total nonsense. She obviously does not

understand about desensitization and you should waste no further time with

her.

> From: M Do <michellemdo@...>

>

> Thank you for that information. That is slower than 2 days, but MUCH better

> than waiting FOUR weeks before being upped a level. When the nurse called me

> back, she implied that I had to be willing to endure some suffering. OMG. I

> promptly told her I had NO PROBLEM enduring SOME suffering if there was A

> FREAKIN PURPOSE. Taking the same dose for FOUR weeks serves no purpose other

> than make my life and in turn, my family's life MISERABLE!!! The nerve of her!

> When I see my doc (whom is 2 hours away from home) on Aug 25th, I will ask her

> if she is willing to do the weekly thing, like you described. If she is, I may

> reconsider. If I can see some light at the end of the tunnel, I am willing to

> go thru it.....but at the rate she had me going, I could NOT see living like

> this for FOUR months!!! omg!! I stopped taking the aspirin today and

> hopefully I am recovered soon.

August 13, 2011

You know, I really am considering it but I cannot get the hubby to agree! =)After reading the response about having it done in 4 weeks, I reconsidered quitting andtoday I took 80 mg of aspirin. Like you said, I assembled all of my 'stuff' and kept it near and stayed proactive and did treatments of Xopenex every 4 hours, upped my Flovent dose for the day, took Benadryl every 6 hours and guess what....no reaction. It has been 12 hours and I was even able to oil pull since my one side of my nose opened up and I could breathe thru it. I may just take this 80 mg a few days and then go to 120mg in a few days, same thing. By the time I see the doc on August 25th, I could possibly be at 160mg and then ask her to take me to the threshold at my appt.Any thoughts Group? I

am not being stupid or careless. I have spent enough time in hospitals and ER's to know how they treat me for asthma attacks, anaphylaxis. I feel confident because I am on Xolair and that is providing me an extra layer of protection from serious reactions. I did read about the specialized clinics and how the rapid process is supposed to go. It also states that it is a very individualized process. I would have preferred to get it done in 2 -3 days but that is not what has happened for me. Now, I am faced with, do I throw the towel in after suffering miserably the past few weeks? Do I wait and spend $$$$$$$ on traveling to one of these places. I live on West Coast. The Pacific Northwest. I really, really want the benefits that are shown to happen for others. I have even started the Sals diet to help my body out. I do not like how this has turned out. I still like my doctor though.

She really has been helping me sort thru my complex mess. I do appreciate the input here and will keep you all posted.Have a nice weekend. =)From: q2 <kenwest@...>Subject: Re: Calling all folks who have had aspirin desensitization.....samters Date: Friday, August 12, 2011, 12:58 PM

If you are OK with "some suffering", then,