Neuropathy from chemo and stem cell transplant

Jan, oh my gosh, this rash sounds so painful! And your BMT doctor is sure it’s not GVHD? There’s a great informational resource for all of us with BMTs and CGVHD.
The National Bone Marrow Transplant LINK is filled with blogs, podcasts, and support for BMT survivors. Here’s one about CGVHD skin conditions:
https://www.nbmtlink.org/chronic-graft-versus-host-disease-skin-related-issues-and-solutions/
If your transplant doctor can’t help I’d suggest a dermatologist. At least to see if this is a recognizable dermatology issue.
From my experience with chemo induced neuropathy, there was no rash involved. I did some quick research online and really haven’t found neuropathy associated with a rash except for Shingles. Could it be shingles? Have you had your vaccinations yet? Are you still on Acyclovir?

Still on Acyclovir. Have had two series of vaccinations and more end of this month. I do have GVHD and am on Jakafi. When I first got the rash, he put me on prednisone and didn't help. That's when he said it wasn't GVHD related. How can I find out if its shingles? I'll take a look at the link above.
Thanks!!

Having shingles on a leg would be unusual. But if it is shingles the rash would contain fluid filled blisters.
Is the rash spreading or just in one area? What does it look like?

I still think it’s a good idea to see a dermatologist. I can’t remember where you had your transplant. Were you at a larger institute with collaborative care that your transplant doctor could refer you to a Derm specialist or neurology specialist?
I had an ongoing issue with my tongue and my transplant doctor referred me to oral dermatologist. Wondering if getting a referral to one of your clinic’s specialists could be an option for you. It’s an awful feeling to not get the support you need right now!

You’re only a year out from transplant and from my experience ‘odd’ things can still pop up from time to time. I’m 5 years out from transplant and recently, out of the blue, had a strange eruption on my ankle. The dermatologist diagnosed it as granuloma annulare. It was treated for a couple weeks and disappeared. A reminder that my immune system, though strong, isn’t as robust as my original immune system. 😉 Anytime something changes in our health when we’re newly transplanted, our first thought is that it’s related to that experience. And it usually is…but not necessarily gvhd. Just a bi-product of a weakened immune system.
The fact that the rash or pain didn’t react to the prednisone is a pretty good indicator that it isn’t Gvhd. Neuropathy can feel anywhere from tingly, to a deep burning feeling, or stabbing type pain which can be unbearable. Generally chemo induced neuropathy doesn’t have a rash associated with it though.
I hope you find some answers soon! This ‘whatever it is’ sounds like it’s really negatively impacting your life. The past year was bad enough…you should be moving on to much more positive days years ahead.
I’d at least start with a dermatology appointment.
Are you able to take any pain meds?

Hi Jan,
That sounds awful. I plan to do a transplant next month so can’t comment from personal experience on GVHD, but I have years of experience dealing with lupus symptoms before it was properly diagnosed (one was severe nerve pain in legs without rash, but prednisone helped me after proper diagnosis of lupus).

When in such acute discomfort, I personally found it best to make appointments with multiple specialty doctors now and cancel as needed, because it takes time to see them. So perhaps add a neurologist to dermatologist, and maybe even a pain specialist to help you now. Also, pharmacists are incredibly smart and helpful so ask them if any of your drugs or the combination could possibly be causing your issue.

I am also attaching a link from the LLS which talks about a new drug to help GVHD patients who were not helped by at least 2 other drugs - which I think is your case since neither prednisone nor jakifi seem to be helping your symptoms. https://www.lls.org/news/fda-approves-novel-treatment-chronic-graft-versus-host-disease

I’ll be thinking of you and hope you find some answers soon. All my best, Deb

Hi again Jan, when I re-read my message - I did not mean to just start with “that sounds awful “, without also adding - I feel bad and frustrated for you because I know how it feels to experience pain and not get any help from your doctor. They are probably good doctors but they have limited time and can even make mistakes. So my suggestions stem from taking control of your health and don’t accept “we don’t know” because someone will be able to help you. Good luck - will be thinking of you, Deb