So I just finished my visit to Mayo and it was wonderful. I was there for 10 days and had an extensive workup and saw numerous specialists including a dermatologist in the EM clinic and a neurologist who treats small fiber neuropathy. Just as I thought, they believe that my EM is due to my SFN which came on after my surgery and that I fit in with the new apparently autoimmune SFN that Dr. Oaklander talks about in her presentation (I’m 24 so I fit in the young cohort she mentions). They offered creams and I declined and then they decided that IV prednisone for 5 days and then weekly prednisone infusions for 12 weeks could potentially completely clear up my EM. I could not be happier that someone is finally trying something for my EM and thought that I would share it all with you. I start my treatment next week and will definitely update on how it goes.
TIP FOR MAYO: For those who try to get into Mayo through the EM clinic, as you all know the waitlist is long but there are ways around it. My big tip of advice would be to go through internal medicine. I got in 6 weeks after requesting an appointment. This also really helped because the internist that you get paired with schedules all of your appointments with various specialists (rather than just the EM clinic) and calls you every few days to make sure that you are getting the testing and treatment that you need and that you are happy with the care. By doing this, I was able to get into the EM clinic today and only received my referral for it yesterday! There is word on here that Mayo doesn’t do more than other doctors but I found that not to be the case anymore and they seemed very up to date on research.
@standing_cat They did mention IVIG initially but they chose IV steroids for some reason, I’m assuming there is some rational for it. I think IVIG becomes more of a long term thing sometimes and they’re hoping that the IV steroids can completely take care of it.
Thanks. Yeah I’m trying IVIG now (just finished my first week … for the “apparently autoimmune” SFN idea Oaklander talked about). My sense is that if I am an IVIG responder, I might need to do it indefinitely (my nurse said she has never seen anyone be able to stop IVIG). Docs say IVIG is less risky than steroids and I should know in 3 months whether it is helpful. Even though I am very glad my insurance is even covering IVIG, a part of me wonders if trying steroids first would have been able to show sooner if there is an inflammatory component (my sense is you would know within a few days if you are going to respond to steroids (?) ). Docs are fine waiting 3 months, if it means a safer drug maybe, but meanwhile I am the one seeing my life + the years go by as this draaaags on.
Anyway, I’ll be looking for your updates on how the steroids go! good luck
@standing_cat Good luck with your IVIG treatments! And that must be what they are thinking, I believe IV steroids would produce results in days vs IVIG which can be weeks before the improvements start to show.
For those receiving IVig, how did you convince your Dr. to give it a try? My Neurologist did the biopsy a few weeks ago, came back as SFN and I have a positive ANA, and EM, it does not seem to be a jump that it is autoimmune. I am going to my next appointment with Dr. Oaklander’s research in hand. I know that my insurance will be a hurdle. I had been given 6 weeks of high dose steroids 3 months ago (though not IV) before we knew the cause, it was just a last ditch effort by my PCP to do something to help! The only thing I could tell was that helped my ability to urinate, nothing else!
My neurologist got it approved for me only with positive SFN biopsy (and other neurodiagnostic testing to suggest SFN like tilt table). All of my blood tests are normal. He cited the 2018 “apparently autoimmune” paper in his request. I also think there is a current clinical trial going on in Europe which your neurologist could cite, but don’t know anything about it.
Thank-you, yes, I have that study as part of the research I will present to my doctor in my plea for IVig. My SFN resulted from a rare sensory form of Guillain Barre Syndrome almost 6 months ago. It should have been treated with IVig then but was not due to incompetent doctors not making a correct diagnosis. I am a retired RN, within a week of onset, I was trying to give the doctors information on this form of GBS and was ignored. It makes me so mad just to think about it. I feel this is a necessity at this point! I cannot blame my current Neurologist for the lack of diagnosis, he is the one who recognized it as GBS and did the biopsy.
Steroids, not so well. While I was on them they made me worse and on top of that I had many other nasty side effects but I’m now nearly symptom free while using a combination of therapies. I made a post about it that you can find in my previous posts. I take mexiletine, cyproheptadine, and propranolol as my medications and then take feverfew as a supplement. I also use capsaicin cream on my feet a few times a week. Be cautious with steroids, they have many effects and also are an immunosuppresant so they might not be the best thing to try while COVID-19 is in full swing.
I was on steroids and my feet got more red and swelled. Does this mean ivig would not work for me? My EM started in my knees, and my doc at the time thought it was arthritis so he gave me steroids and it went away. Im hoping that is a sign that ivig would work but steroids have too many adverse reactions for me.
steroids have a flushing side effect and sometimes there are rebound issues when coming off (according to my doc). IVIG might actually have a flushing side effect as well but generally not as severe/common as steroids. This is why IVIG was recommended to me, and why steroids were not recommended for me. There are also other immunomodulators like Imuran, Cellcept, methotrexate - because getting IVIG can be difficult. Even if insurance approves, it can still be expensive (insurance has me pay 10%, so it cost me 1,000$ / mo).
Right now my doc has me on plaquenil, Cellcept, and we are trying to get high dose IVIG going. Docs believe I have immune-mediated EM.