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Has anyone been diagnosed with GFAP
Autoimmune Diseases | Last Active: Apr 15 7:49pm | Replies (54)Comment receiving replies
My husband was diagnosed December 2022.
He started with symptoms in April 2022, they kept thinking he had lymphoma somewhere; so, many months were wasted in not getting the right diagnosis and treatment. He currently still has a balance problem and a sight issue. He was finally on an eight month treatment of prednisone starting with 70mg and tapering down 10mg each month. He was also on mycophenolate , an antibiotic, and other supplements. This was his cocktail.
I am curious to know what your treatment was and for how long. Also what were your symptoms.
We have been trying to connect with someone who has this, since they keep telling us it is so rare.
Thanks for listening!
Replies to "My husband was diagnosed December 2022. He started with symptoms in April 2022, they kept thinking..."
Hi,
Sorry for the delayed response.
I hope your husband feels better and that the treatment continues to have a good effect on him.
I became (acutely) ill at the beginning of June. Had flu symptoms, fever, headache, body aches and I started vomiting. Was admitted to hospital urgently for investigation, once there my problems increased and I was very confused for weeks. I have no memorys of that period. It turned out that I had severe inflammation in the brain, meninges and spinal cord. After about 3-4 weeks, the diagnosis of gfap-astrocytopathy was confirmed.
The first treatment was plasmapheresis and solu-medrol for 5 days. After that I got prednisolone, first 60mg and then gradually lowering the dose, the plan is to stop cortisone in January. Has also received an infusion with rituximab, which will be repeated every six months to begin with. I have recovered quite well. Had major problems with my balance and tremors in my arms, but it's almost completely gone now. I do have some issues with brain fatigue but it’s also better and improving. I have been able to return to work part-time, hope to gradually increase it from January.
Nor have I found anyone else with the diagnosis, so thank you for sharing your experiences.
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@gardrums123 hello, again. I see that you’ve come back still looking for someone else who has GFAP. It’s really unfortunate that your request in May didn’t elicit any responses. When your doctor said the disorder was rare, he really meant it. I first joined Mayo Connect, there were no responses to my query about my autoimmune disease. Through Mayo, i have found 6, but they are all experiencing the disease differently.
Can you ask the doctor if he has treated anyone else with GFAP and could you talk to them?
Do the doctors consider your husband stable currently? Is he receiving physical therapy for the balance issues? And seeing an ophthalmologist for his vision issues?