Have you been treated with high doses of prednisone for Autoimmune Amm

Posted by ditzyblond @ditzyblond, Jan 19 5:13pm

I have been diagnosed with Autoimmune Disease Ataxia. My neurologist put me on a treatment of Prednisone. I took 25 50mg a day for 5 Days. I came off it extremely weak and just feeling awful. It’s been 4 weeks and I am not any better. I use to get around with a cane. Now I have to you a walker even in my small apartment. Anyone else had this treatment and had this reaction? I called my doctor several times and all I got was a message saying the prednisone would not cause that. I don’t have an appointment until March. I am looking for a new doctor. By the way the treatment didn’t touch the Ataxia. Have no idea if it helped th Autoimmune disease.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Becky, Volunteer Mentor | @becsbuddy | Jan 19 7:17pm

@ditzyblond Welcome to Mayo Clinic Connect! Glad you found this site. While you wait for other members to join the discussion, here are some previous discussions you may wish to read. They are 2.5 to 3 years old so I don’t know if the members are still active but the discussions haven’t changed.
https://connect.mayoclinic.org/discussion/autoimmune-cerebellar-ataxia-vs-autoimmune-encephalitis/
https://connect.mayoclinic.org/discussion/speech-difficulty-dysarthria-autoimmune-cerebellar-ataxia/
Will you be going to a comprehensive medical center or university medical center to find a new doctor? That would be your bet!
Can I ask what the letters Amm stand for?

mwhite6262 | @mwhite6262 | Jan 21 11:47am

I was on 60mg prednisone for 2 weeks, now am on 40mg until my appointment with the rheumatologist which is not until first week of April. Being treated for PMR. My neurologist is following me until she can hand me off to the rheumatologist. The fatigue and outright exhaustion is overwhelming. I am using a wheelchair to navigate household chores. Only leaving the house for doctor appointments. Not driving anymore.

suetex | @suetex | Jan 21 11:58am

@ditzyblond When you get around to checking what is really wrong with you, have the doctors look your lumbar vertebrae. This is where your autonomic nervous exits your spinal column. Things can happen there and produce some of the symptoms that you are experiencing. You don't necessarily need to have a lot of pain from that area. Just a thought... Been there, done that.

ditzyblond | @ditzyblond | Jan 21 12:20pm

In reply to @suetex "@ditzyblond When you get around to checking what is really wrong with you, have the doctors..." + (show)

@suetex
Thank you. Will discuss that with my doctor.

Alta Net | @altabiznet | Jan 22 5:34pm

In reply to @ditzyblond "@suetex Thank you. Will discuss that with my doctor." + (show)

@ditzyblond

I also had high dose prednisone for scleroderma (post Stem Cell Transplant), and experienced extreme fatigue. Prednisone was tapered off in 5 weeks, but fatigue is still present 12 months later. The doctors say that it is due to scleroderma, but I think it is due to Prednisone, as this fatigue feels different from what I had before the treatment. I do not see the benefit from HD Prednisone in my condition, but your disease may be different. Getting a second opinion is a good idea.

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