Has anyone been diagnosed with GFAP

My daughter has been diagnosed with inflammatory arthritis and has been on Methotrexate and Humira. She has developed an infection in her breast which has required two lots of antibiotic. My question: how do people on these drugs protect themselves from repeated infections?

My husband was finally put on prednisone and mycophenolate yesterday after going downhill after hospitalization in October with unspecified AE. Awaiting results from 3rd round of CSF sent to Mayo.
Fingers crossed it will help!
I hope you see some improvement too.

So glad they started him on that treatment. That is what got my husband back on his feet along with physical therapy . I hope this will get him functioning.
I must admit my husband never got back to his old self. He still has walking, balance and sight issues. He cannot walk a as far as he used to. We used to walk an hour every few days. His balance is still very precarious, but we are grateful for how far he has gotten. He does occasionally have cognitive lapses, but nothing to be concerned about.
Thank you for caring words and I am rooting for your husband to recover.
Also we have to take care of ourselves…which does become hard to do when caring for someone.
❤️

Hey @gardrums123 @hassel I was admitted to the hospital about a year ago. I had severe headaches for a couple days before and went to the doctor and he said I had covid, without even testing me. A day or so later I fell at my house (my legs just gave out) and I don't remember anything after my sister finding me after I crawled to the bathroom. Last thing I remember was her getting her boyfriend to come pick me up and they took me to urgent care. Apparently after that, I was sent home and couldn't even walk. A day or so later I went to the hospital and they did all kinds of tests and thought I had meningitis. After a few days, they started a steroid treatment and it worked wonders. I don't remember anything until I was at the hospital for a couple weeks, but I do remember things that were going on, just completely different than what actually happened. In example, I VIVIDLY remember being out in a desert and having my eyes checked by Russian doctors. I was sitting on tons of ice packs as it was ridiculously cold. Apparently I was actually covered in ice packs, probably having my eyes checked by a Dr at the hospital. After a few months of inpatient and outpatient rehab, I'm feeling relatively normal now. I'm currently taking 2000 mgs of mycophenolate daily. The Drs said it was incredibly rare but had around a 50% chance of relapse. I found this thread because I've had a headache today (hopefully just because of congestion) and started looking online for others that have experienced/know someone that has.

My father was diagnosed after having such similar symptoms to everything described. He was completely non-ambulatory by the time he was inpatient at Emory in Atlanta and they finally did a spinal tap and came back as positive for GFAP. He responded so well to IV steroids in the hospital in late december but they did no taper and we didn't have the diagnosis so it came raring back in January. We finally just saw a neurologist in late February and he is now on a Prednisone taper and immune suppression medication. I"m interested in the supplements as well if anyone has any suggestions. Our Neurologist is probably the best in the state however still has no experience with this disease because it's so rare!

This is very interesting.
My husband was hospitalized in October with rapid onset of confusion, extreme difficulty with gait and balance. He was experiencing hallucinations and psychosis. One CSF test for GFAP came back abnormal, but subsequent tests came back negative. He also was given 5 days of high dose steroids and responded very quickly. He was released without any taper also, and by the end of November he had relapsed. His neurologist feels he has GFAP, and he is now on oral steroids and mycophenolate.

The doctor recommended taking 600mg calcium with D3, due to the steroids depleting calcium. He also prescribed Fosamax.
My husband has been having outpatient physical therapy and cognitive therapy 3X a week and I feel it has helped him a lot.
He is doing much better, and can even drive again as of last week. He still has gait and balance issues, and problems with short term memory.
I hope your father improves. I think because he responded quickly to steroids he will get better.
My best wishes to you and your father.

Hi all, Just giving an update on my husband who was diagnosed with GFAP December of 2022, but started with symptoms in the spring of that year. I was the one that started this discussion.
As of now he is still mobile. He never regained his normal walking, still having balance issues and uses a cane, but we are thankful he is walking. His spine has a lot of issues, not sure if it was due to the long term prednisone usage.
He is now seeing a chiropractor who treats with gentle chiropractory.
He has not gotten his taste or smell back since stopping prednisone and has never had Covid.
I am a bit concerned as of this reply because he seems to be having involuntary leg movements at the end of the day when he is resting and sleeping. This is what happened before he was hospitalized 2022 because it then went into him not being able to walk.
I wish everyone in this discussion to be able to deal with this unusual rare disease. Keep positive and strong.

Hello! I was diagnosed back in Sep 2022. I have been living with this disease and dealing with all of its symptons since then. Its a daily tasks and it can be difficult to cope with both physically and mentally! I am now 46 years old and have accepted that this is the new way of life.

The Restless legs at night and sometimes happens during the day, havent stopped for me either and I dont think that they ever will! The tremors did become a little more less intense but the shaking still occurs. I would be too concerned, in my opinion, mine are due to the miningees in my lower spine that damaged my nerves which confuses the brains communication and the shakiness is a symptom of that. Not enjoyable!!!

Hello, I was diagnosed with GFAP in Sep 2022 and have been dealing with everything that comes along with it sense. I have had most of all of the symptoms that come with this disease and its manageable but....it will change your life and you will feel different but that doesnt mean its over. I have learned that this disease does make everything more difficult..simple things like, I cant run or jump and I have balance issues and much more. You are able to do many things but you must plan differently and have patience.