Has anyone been diagnosed with GFAP

@gardrums123 Good evening and Welcome to Mayo Clinic Connect. This is an online forum for people to ask questions and get answers and help from other members. I found this site because I, too, was diagnosed with an autoimmune brain condition. I was so stunned by the diagnosis, that I wasn’t comprehending anything that was said to me. Once I got help at a university hospital and started treatment, I was able to begin to understand. My husband really took charge and made sure i was everywhere I needed to be. Now, 6 years later, no one would ever know that I have an autoimmune disorder. There is hope!
I looked up GFAP and it is rare, so I’ve never heard of it before. While we wait for other members to join our discussion and help you with answers, please feel free to ask me anything you would like and I’ll try to answer.
Were you given any information so that you could become an expert on GFAP? Has your husband started treatment?

Hello @gardrums123, I would like to add my welcome to Connect along with Becky @becsbuddy and others. I thought I would share this research article that may provide some insight and hope as to what may lay ahead for you and your husband.

--- Autoimmune glial fibrillary acidic protein astrocytopathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6522205/

Thank you John for this article. Although it was quite difficult to understand we were able to get some insight on the disease.
He has been dealing with this for a year. At first he was being diagnosed as having lymphoma which turned out to be wrong. It took six months until he got this diagnosis. We are hoping it isn’t too late for him to get back to some normalcy. As of now he has a hard time walking. His balance is very bad.
He also has sight problems as well. We are trying to stay positive.
Unfortunately the treatment he is on has given him some secondary issues so we are dealing with that now.
Thanks again for your help.

Thank you Becky for responding. My husband is on treatment. He now is having some secondary problems with the treatment. High liver count and high A1C, so we are dealing with that.
We do have info on the disease but most of it is written with lots of medical terms.
We keep having hope he will get better and better with time, but it seems there is no guarantee for that. Each person seems to be different in how their outcome is.
Thank you so much for responding.

Looking for anyone diagnosed with GFAP

Hello! I was diagnosed during the summer. became ill at the beginning of the summer, received treatment and feels much better now.

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!

@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?

Good morning,
We have done all of the things you have suggested.. He is currently stable. Someone from Mayo Connect did respond and we are waiting to hear more from them.
Thank you so much for connecting!
Be well!

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.