Allergies Community

Hi dafna26 -

You raise some very important and still-unanswered questions about food immunotherapy. I appreciate your skepticism, as many people want to believe this is a cure, and it is not. We at Duke are among the centers around the country and world studying this approach. While we are excited about positive preliminary results, there is much left to learn, including but not limited to the questions you ask here. For these reasons, neither the FDA nor the professional allergy societies have approved this approach, and it should only be done on a research basis. It is not ready for clinical use yet.

Based on what has been shown to date, there appears to be a "desensitization" effect. This means that you must take a dose every day -- if you stop, the temporary effect of the desensitization will stop. It also means that a daily dose will likely protect you from a minor accidental exposure, but maybe not a major one. Your diet would remain otherwise free of peanuts -- this treatment does not allow you to eat whatever you want -- and you'd still need an autoinjector in case. Also, approximately 15-20% of folks that have tried this can't tolerate it due to allergic side effects, and have to stop taking it.

As you can see, this is not by any means a panacea but simply the first small step towards a treatment. It has been done only in very small numbers of highly selected patients, and at centers that have specific expertise in this area. It causes side effects, may not work for everyone, is not permanent, and should not be used as a treatment in the general community at this time.

Hope this helps-
Brian

Hello Dr. Vickery,

I could not find where to start a new discussion, so my apologies for the off-topic reply.

I have been to med-express twice with both resulting in not solving my problem.

I started with a bit of a rash on the shaft of my penis, which I took care of myself with various medicated body powders and jock itch creams/sprays etc.

The problem did not cure, and started spreading after a month or two. So I went to med-express and was treated for a fungal infection taking prednisone, another steroid, and applying a cream 2 times daily. The rash went away, but sure enough came back up after I stopped taking the prednisone.

My 2nd time back to get re-evaluated, the Dr. suggested changing my soaps, shampoos, laundry detergents, etc. (which I did) but I also was not satisfied with believing it was only an allergy so he put me on prednisone again and an antibiotic to cure any type of secondary infection and what not.

I recently finished taking the both and it seems as if the itching has gotten worse and my entire penis and base of the shaft and surrounding areas are bright red as if I am having an allergic reaction to something. I cannot figure this one out and have not had the time or money to spend on going to a dermatologist on having a 3rd opinion. Sorry for the length of this message, please help in any way possible! -Mike

Thank you for your reply. Interesting that you say it isn't ready for clinical use since the treatment is already being offered (at least where I am at).

I'll wait it out for now, keep following the research and hopefully there'll be advances soon and answers to the various questions.

Hi dafna26:

I am certainly aware that practitioners around the country are already offering this type of treatment to their patients. They are doing so against the advice of the research community, the FDA, and of the National Institute of Allergy and Infectious Disease at the NIH, all of whom have issued recommendations not to offer this to clinic patients yet. Keep in mind, the grand total of peanut-allergic patients worldwide in whom this therapy has been studied is somewhere around 100 - 200. Contrast that to a typical new drug study for another condition, say high blood pressure, in which tens of thousands of patients are often studied before a drug is released for clinical use. And then still in many cases we learn later that some of these drugs have safety problems not seen even when such a big sample is initially studied.

So the early studies have been promising, yes. And they will probably lead to a treatment. I can understand the rationale to go ahead and offer what is a desperately needed therapy. But more patients need studying and more scientific and regulatory issues need addressing, so that we can be sure that we have a safe and effective medicine. When that day comes, the FDA will license it for use and your insurance company will cover it. Stay tuned!

Good luck-
Brian

Thank you Brian, that definitely settles the question for me of whether the benefits outweigh the risks - they don't.

The reason I want to get rid of my allergy is to get rid of the fear that always accompanies my eating out, and the limitations I set for myself as a result of this fear (refraining from eating many foods that are most likely fine). As you made it more clear to me that at present, it is far from certain that the desensitization effects are permanent, this treatment will not help me get rid of this fear, as I'll always wonder whether it'll have worn off yet.

As for the objective danger, even though the place offering the treatment gave me the impression it's a matter of urgency to get treated since as long as I am walking around with this allergy I am in constant danger, it seems to me that a planned, supervised exposure isn't necessarily safer than any accidental exposure that may happen, since I always carry an Epipen.

Which leads me to one more central question I have about the real level of danger with this allergy. I get alarmed by scary stories of people dying and warnings about the dangers of food allergies, but maybe the danger applies mostly to children who may not know what not to eat and aren't properly supervised, and people not being careful (or informed) and not having an Epipen with them.
Given that I always have an Epipen with me when I eat out, is there still reason to be afraid? Although I am also afraid of having the very unpleasant experience of a reaction, ultimately my main fear is dying from it.
I'd like to hear there's no risk at all, but since I understand that as long as you live you risk dying, maybe you can just put the risk in perspective for me. Does the amount of risk of dying from this warrant any more fear than it does of, say, driving? Or is being afraid like this more akin to my fear of flying (or rather, dying in a crash), which is, while possible, extremely unlikely?
I'd be very glad to hear your response to this, as the fear is really what causes this allergy to have its big impact on me (and NOT, as anyone without allergy seems to think, the fact I can't eat peanut butter).