Has anyone been diagnosed with GFAP

My husband was tentatively diagnosed with an unspecified autoimmune encephalitis/possible lymphoma in Oct. 2023.
Blood and CSF sent to Mayo for testing. Everything came back negative, except the GFAP screening of CSF came back ABNORMAL . However subsequent tests to confirm came back negative.
His symptoms started with persistent cough earlier in the year, treated with steroids. By late August he was confused / disoriented. By September he was unable to complete simple tasks. By early October he was incontinent, having staring episodes, hallucinations, and psychosis.
All while waiting to get an appointment with neurologist. Finally an ER doc took us seriously and he was admitted. He was given high dose IV steroids for 5 days. He responded rapidly and discharged with lymphoma/AE working diagnosis. No steroid taper.
He was doing pretty well 80% normal.
In late November, he starts coughing again and is confused and GP gives him a 5 day course of steroids and he improves. Now he’s worse again. Balance and gait issues, confusion, short term memory is shot. Neurologist and Oncologist are taking a wait and see approach to all this. I think he may have GFAP. Sorry for the long post, but I’m completely befuddled.
Any thoughts?

Hello @humphrey, Welcome to Connect. I know it must be terribly concerning to have your husband diagnosed with such a rare condition as glial fibrillary acidic protein astrocytopathy (GFAP). @gardrums123 and @hassel may be able to share some thoughts or suggestions with you. You also might find the article listed earlier in the discussion helpful for learning a little more about the condition.

Here is a link to the same article and another one that is similar:
--- Autoimmune glial fibrillary acidic protein astrocytopathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6522205/
--- Autoimmune Glial Fibrillary Acidic Protein Astrocytopathy: A Review of the Literature:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6290896/

Thank you for the information. My husband has not been definitively diagnosed, but this comes very close. He has many but not all of the symptoms described in the article, along with an abnormal result in his GFAP screening. Hope to learn more soon

I am so sorry you are going through this. We encountered the same confusion as you both are going through. My husband did not have all of the symptoms that yours is experiencing. His was mostly gait and sight issues at first. He was also told he probably had lymphoma and that it was hiding somewhere. That never surfaced and in the meantime was not tested for GFAP. I feel we wasted so much time trying to figure out what it was that he had.
To this day not one doctor that he has seen has ever heard of it!
I. Am always looking for more info about it and to see how people are getting on in their life, but I never seem to find anyone, so thank you for responding.
Right now just about two years into the condition he has never regained his balance fully….his legs always feel “funny” and his eyesight is not clear. We just went to see if glasses will help and they fitted him with lenses which we are waiting for.
My heart goes out to you on this journey. It’s not easy and it’s frustrating.
Stay strong. I am sure you are his advocate now as I am for my husband. ❤️

Thank you for your experience on this very misunderstood condition. You were really treated aggressively! My husband was only put on long term prednisone and mycophynolate and other supplements.
I’m happy to hear how you seem to be improving.
At this point we are happy that he can walk!
Good luck to you and please keep us all informed on how you are doing. 😁

@gardrums123
Thanks so much for your kind response and sympathy. My husband was given 5 days of IV steroids in the hospital, and literally snapped out of many of his symptoms.
Unfortunately, both the neurologist and oncologist don’t want him have no more steroids until they know for sure what he has exactly. I’m suspicious that he might have GFAP, because the screening for GFAP in his CSF came back abnormal.
Since the steroids wore off he seems to be declining.
I’ve sent in an application for an appointment to Mayo in Rochester. I hope they approve it, and we can get some intensive testing and possibly treatment. I wound be interested in hearing what medications and treatment they gave your husband. It’s so tough when the docs just say, “ we’ll do another MRI and see you in a month.”
I’m sorry to hear your husband is still having vision problems and trouble with his gait.
Have you looked into physical therapy. I requested it, and he just started this week.
I hope your husband continues to improve. I understand it can take some time.
I so appreciate your response and kind words.
Hang in there!

Good morning,
My husband was given a five or seven day IV treatment of steroids. He was unable to walk at that time. He was in the hospital for about two weeks and then sent to a Rehabilitation Hospital to get walking again…which did a wonderful job! He was diagnosed while there with GFAP and his treatment was a high dose of prednisone and an immunosuppressant. Starting with 70mg of Prednisone and tapering 10mg per month. With fingers crossed he has not had a debilitating relapse.He then had out patient physical therapy for 3 months. That all happened Nov and Dec of 2022.
If I may ask, how old is your husband? My husband was diagnosed at 72.

Good morning.
My husband is 80. But a very active 80 until stricken with this. He flew his private plane about 3X per week, practiced formation flying, and flew on cross country trips.
He cleared brush, and worked on his antique jeep. Within 4-5 weeks he was unable to make a sandwich or do other simple tasks. He also was almost non-ambulatory by the time he was hospitalized. However, after 5 days of IV steroids, he was able to walk pretty well, and it was determined that he didn’t need rehab. I’m puzzled as to why they didn’t give him a steroid taper after that. The only answer I can get is that they don’t want to treat him with steroids when they don’t have a definitive diagnosis. They think it’s AE or possibly Lymphoma.
He’s just started outpatient PT, and he’s tolerating it well, but too soon to tell how much it will help. Did your husband experience confusion and memory loss? Mine was better immediately after hospitalization, but now memory and spatial deficits are re-emerging.
It’s so frustrating to know that steroid therapy will help him, but both the oncologist and neurologist don’t want to prescribe them.
It’s very fortunate they were able to identify the GFAP antibody with your husband. It’s so rare. I’m glad they were able prescribe a treatment plan for him. I hope you continue to have more “ up” days than “down” days, and your husband continues to improve. Thanks for the encouragement.

Where did you receive treatment? My father was diagnosed. We live in Orange County, Southern California. I try to find a hospital or doctor nearby that specializes in treating this disease.

I’m so sorry for your father’s diagnosis of this . It is almost impossible to find a doctor who has ever heard of it! Every doctor we dealt with never did.
We live in the NYC area. My husband was in Mt. Sinai Hospital. The doctor there referred all of his test results to the Mayo Clinic. They were the ones that diagnosed him and recommended what his treatment was. His treatment was a high dose of steroids orally, a immunosuppressant and several supplements that tapered down each month. He did this at home.
So far he able to walk again, but deals with lots of other issues from it.
If you read others that were treated, they had different treatments.
I wish you all the best in this rare and frustrating disease.