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Serious rash with Nplate?

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10 years 11 months ago #46550 by mngrrrl
Serious rash with Nplate? was created by mngrrrl
:sick: Has anyone gotten a rash after using Nplate for a while? I'm having an allergic reaction that we can't trace, but it started a day after my latest Nplate injection. The info on the web doesn't list a rash as a known side effect, but it does list "rash" as a sign of an allergic reaction (as does just about every other thing that can possibly cause an allergic reaction, of course).

Thanks,
mngrrrl

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10 years 11 months ago #46597 by cboggs
Replied by cboggs on topic Serious rash with Nplate?
Hi.

Nplate worked very well for me for 13 months, then I started breaking out in itchy rashes on my legs after the shot, and my platelets fell permanently to less than 5,000 and stayed there, and I started developing large hemotomas after each shot from the needle puncture.

A dermatologist biopsied two of the rash spots (which were each about two inches across), and the pathologist initially diagnosed them as flea bites, because they had a raised center. However, they were not flea bites, as they came out an hour after my last shot and while I was sitting in the lab waiting for a blood test. I had been getting this reaction for more than 10 weeks, but ignored it because I really wanted the Nplate to start working again. It never did. (I did have a flea bite that swelled up earlier in the summer, but it looked and felt completely different.)

Amgen is supposed to test people who have a bad response to determine what is causing it, but they and my hemotologist's office went back and forth on this for several months after I stopped Nplate at the end of August, and the test was never run.

The pathology report showed there were leukocytes in the rash, but didn't diagnose the type. Looking at pictures on the Internet, the type of rash it most closely resembled is called Sweet's Syndrome, a rash that may be related to blood disorders.

Three related issues; the rash got a lot worse during three summer heat waves. When I finally quit Nplate, I went on a four day course of Dexamethosone, to prevent the platelets from falling to zero. The drugs only raised the count to six, but since then, I've never had any new outbreaks of the rash.

I also developed new food reactions to salicylates concurrently with all this. This may not have been from the Nplate, as I have since learned I have genetic methylation mutations that may make me succeptible to their build up (affecting MTHFR, COMT and CBS functions). I'm currently researching how these might be related to my general immune issues, including the ITP. Treatments for these type of problems involve taking special B vitamins (methyl folate, methyl B12, and Methyl B6 especially), and avoiding the forms of these vitamins typically included in B vitamin fortified foods, as people with these types of mutations (which it turns out are common) can't adequately use them. I've changed my diet and started taking powerful digestive enzymes which have also helped.

Am also looking into treatments for mast cell disorders, since I have symptoms of that, too.

I'm hopefull there are ways to reset the immune system to resolve the ITP along with the other allergies many of us experience.

Good luck.

Cathy

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