Has anyone done the desensitization to sulfa procedure?

[drz]

I tried my first drop Tuesday of Bactrim and had a mild lump in throat but thought it might be due to anxiety over procedure. I got involved in a conversation with an old work acquaintance and got distracted enough so I didn't notice it. On the second day we went to two drops as this is procedure Dr. Specks spelled out for local doctor administer meds and monitor the procedure. Within ten minutes I felt my throat tightening up and a felt like I had a big lump in it. I could breath OK through my nose but felt my swallowing was constricted. I got checked out by doctor supervising the procedure as he handles allergy injections and treating other pulmonary issues.

He has done desensitization for other drugs but not sulfa and told me it doesn't always work. He offered to have me try again today with same dosage of two drops but I woke up with sore throat this morning and mucous running down the back of my throat so I already felt I had a lump in it and decided I would have trouble recognizing the warning signs so opted to postpone the desensitization till Dr. Specks or other doctor at Mayo review my situation and make a recommendation on how to proceed. I didn't need any epinephrine but the lump last a few hours.

I really was hoping it would work so I could take Bactrim and get off the pentamadine nebulizer treatments every four weeks. I don't think I have had any sulfa meds since childhood but it seems my allergy to it is worse than I remember.

[me2]

drz,
I'm sorry you are having trouble , whatever the exact source may be. I went through desensitization many years ago.
Previously my reaction to sulfa was an itchy rash. The desensitization went off without a hitch for me. I know it has a very high success rate , something like 80%. I looked at the original study many years ago and was very impressed. Of course 80% isn't 100%.
Your allergy might be worse but I have been told more than once that allergys can also go away over time. I hope that turns out to be the case for you.
I thought I remember that part of the desensitization protocol advantage was that it was quite safe- were you told that too?
I know the initial doses are very small - especially compared to therapeutic horse dose we get.
As far as I know you could keep starting the initial dose over and over again until you figure out if you are having an allergic reaction, in which case it would act the same every time, or if you are coincidentally having something else going on.
With doseages that small I would be surprised if the risk is very high - of course you need to ask your doc about it.
Plus, the idea is that your body gets used to the drug at small doses and can then tolerate increasingly large doses all the way up to therapeutic.
Did the doctor suggest having some benedryl on hand? I don't know much about it but it seems I remember that is given for allergic reaction and if nothing else might bring you relief if you are reacting .

[norcalian]

Hey drz - I'm sorry that you're having a rough time with the desensitization. We talked a bit about all of this before...I'm hoping to go through the process myself sometime in the near future, so I can stop taking Mepron every day. It's good to hear that the success rates are so high...perhaps Dr. Specks will have some alternative processes to help get you on Bactrim. As it is, could you keep trying the same dose again...until you stop having a reaction? I think it would be hard to differentiate between what is a real physical reaction and what is a psychosomatic symptom.

[Kami]

For some reason my Hemotologist doesn't even want me on the Bactrim I had to do the Pentamidine. He said no sulfa with my warfarin.

[pberggren1]

I think Marta tried it.

[KathyB]

Interesting thread...I'm allergic to sulfa (as are my sons) and didn't know there were treatments for desensitization. Tell me more!

[Thakator]

Kami - - I see several doctors for various reasons and none have ever mentioned a problem with my taking Bactrim and warfarin together (and they are aware of my doing so). I haven't read of any problem therein either. This doesn't mean I haven't missed something or that your hemotologist is wrong; in fact, he's a blood guy and therefore probably knows the so called blood thinners and their effects better than most, not to mention his familiarity with your specific case and your specific needs. Just wanted to give you some input. And, I will be asking my rheumie about it to see if perhaps I need to make an adjustment to be in accord with your doc's concern. Ron

PS - - you mentioned in another thread that you thought tapering pred by 10mg/week was too fast and that 10/monthly should be more like it. You're right, if one has been on it for awhile.

[Sangye]

Ron, Bactrim increases the potency of warfarin. If you take them together it's important to take the same doses and get your INR checked regularly. The interaction between bactrim and warfarin supposedly causes more deaths among seniors than any other drug combo. As long as your docs know about it and are monitoring you well you should be okay.

[Thakator]

Sangye - -Thanks. I half-way suspected that, I guess (the docs' awareness and factoring it into all else they're keeping tabs on with me). They do insist on INRs regularly; it was weekly for awhile after first starting the warfarin, then bi-weekly, then monthly. So, they were adjusting the wafarin levels to accomodate their percieved need for me to take the Bactrim (which I agree with). Lending creedence again to Kami's hemo doc. I'm always a learnin' here on this forum - - and, that has made my Wegener's journey all the more bearable. Ron

[marta]

Hi again, I did consider trying it but my doc at the time decided against it as there was too much on the plate to go through that as well. We also have a small hospital and I probably wouldn't feel super safe in case something went wrong.

So I haven't been on Bactrim but I'm on Dapsone instead. I've been taking it every day since diagnosis and no ill side effects. It's a pill so I pop it with all my others. I know that Bactrim has a mysteriously positive side effect on those with sinus involvement - which I do - so I was kinda bummed that I couldn't take it, but like I said the dapsone has been fine. I think those are the three choices. Bactrim, Dapsone and the pentamadine nebulizer. Maybe you could ask if you can try Dapsone. They wanted to take me off it at one time when my liver was acting up but then using Sangye's words of wisdom I sleuthed my liver issues to active disease and not the Dapsone - which has been proven to be the case since then.

Hope this helps.