Wow, the rashes you've gotten from medications sound pretty bad! So sorry to hear you had to go through all that!! Glad to hear that Endocort has been working well for you. I've heard that since it's a corticosteroid, longterm use is not recommended. Will your GI be putting you on something else down the road?
I agree with you that it's so weird that some of the meds cause some of the things that they treat! An example that happened to me is that I broke out in an itchy rash on my back when I tried taking Entocort---yet it's a type of steroid, and steroids generally HELP with rashes, not cause them!?
I recently read a research study about 5 individuals with hypersensitivity to alzathioprine (and 6-MP). They tested out fine regarding their TPMT enzyme levels, which means they had the proper enzymes to properly metabolize the meds. So, the study indicates that their hypersensitivity reaction (of EN and pustules) may be to the medication's metabolite (waste byproduct when the body breaks down the meds).
Thanks for your suggestion about the biologics. My GI doc doesn't want to try that yet, probably because the risks of the biologics are greater than the severity of my disease. I have moderately severe Crohn's (inflammation and strictering of my terminal ileum), but my outward symptoms are quite mild compared to others. Sorry to hear you've had 3 resections already.
Yes, my GI doc is fantastic. We have a great rapport, and I feel very fortunate to have him! Of course, both he and I reading about case studies showing a link between 6-MP and EN helps!
Yes, won't that be wonderful when they narrow down the different variations of IBD, and which individuals will do well on what meds. Hopefully that will be in our lifetime!
53 year old female;