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Re: terms - desensitization

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Thank you Lori, this is the clearest explaination I've had yet - and I saw my Consultant today. He could learn from this group, I'm sure, but all I gave him was Ken's Ode to 2008! It's actually a relief to hear one doesn't necessarily have to see a vast improvement in symptoms as I have seen a slight improvement, but not enough to significantly reduce my steroid intake. My consultant was hoping to have seen a better improvement in my symptoms, when I thought I'd been doing pretty well. I won't feel so disappointed now, thanks! Beckytruelori <lori@...> wrote: I think the terminology surrounding desensitization might need to be clarified to help us communicate about this. Desensitized to aspirin does NOT imply any general symptom relief. It only means that you can TAKE aspirin without having a reaction to it. *******************Allergy shots are essentially a slow desensitization process to whatever particular allergen you are being desensitized to.The symptom relief that comes from aspirin desensitization may not occur in everyone. Thus, people can get desensitized to aspirin and be able to take it every day but it may not improve their symptoms of Samters.For some people who need to take aspirin for other reasons, there may be medical value to being desensitized even if it does not improve one's Samters symptoms entirely. It seems there may be some people who can NOT be

desensitized to aspirin for whatever reason, meaning when they take aspirin they still have a reaction to it, even though they have gone through the desensitization procedure!**********************The reasons that people can be desensitized to aspirin in Samters but not experience symptom relief are really unclear, and this is part of what they have been studying at Scripps for the last 30 years. For that matter I think it's still not clear why many people who are desensed GET symptom improvement!At Scripps they claim 87 percent of their desensitization subjects experience at least SOME symptom relief, allowing for a reduction in steroid use.I am pretty sure it's clear that people who stop taking aspirin for any period of time generally are no longer desensitized, i.e., they will react to aspirin upon taking it.However, people may still experience, for a period of time, symptom

relief. In my case the desensitization process stabilized me in such a way that I have been able to be off aspirin for almost six years without full return of my original symptoms before my original desensitization. I do not believe I can take aspirin without reaction, so I am no longer desensitized.I hope this makes sense ... Lori

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Becky, It's hard to write about this stuff! I'm glad it made some

sense to you. Some people see no improvement at all from aspirin

desensitization, well, according to Scripps, at least 13 percent of

people do not see improvement.

I don't know what your full regimen is, but I do think for many

people aspirin desensitization combined with several other compoents,

such as steroids (sprays, asthma inhalers, drops, oral if necessary),

leukotriene modifiers such as Singulair and Zyflo, irrigation,

dietary changes, even some types of exercise, etcetera, can bring a

larger improvement.

I was one of the lucky ones; my response to aspirin desensitization

was very dramatic, but it may have been because I was so very ill

beforehand. My doctors were afraid I might die in a year or two if

they didn't find something that worked, because I was on very high

doses of prednisone that were not even helping.

Anyway, hopefully you can continue to tweak things and find a regimen

that works better for you as time goes on.

Lori

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