Relapse after GFAP

Depending on how much prednisone he was on and length of time the withdrawal symptoms for lack of cortisol can make you extremely tired. Light headed. He may need to slow the taper of the prednisone.

I got sick with similar symptoms-really bad balance issues, nausea, vomiting, fever, extreme fatigue, trouble moving my arms and legs properly, and vision problems like blurry and double vision. I also had some issues with my autonomic system-like heart rate, digestion, and bladder function.
I had similar treatment to your husband, but instead of IVIG and antibiotics, I got plasma exchange(plasmaferes). After that, I started on Rituximab infusions every six months as a preventive treatment (which has worked well for me). I also got high-dose steroids-first through IV, then as tablets-which were slowly tapered off over six months.
While tapering off the steroids, I slowly started to feel better. But I did catch a few small infections (just regular colds), and every time that happened, my symptoms would get worse again instead of better. My doctor called those “pseudorelapses”. Luckily, once the infections passed, the symptoms eased up again and recovery kept moving forward-just really slowly.
Recovery has been a long, bumpy road. It’s been hard to notice progress sometimes, and when I got sick with something else, it really felt like I was going backwards. I still deal with a lot of fatigue and need to rest and take breaks every day, even though it’ll be two years this summer since I first got sick. So it’s definitely taken time, and it hasn’t been a straight line. I’ve tried to keep up with physical activity, even with the balance issues, movement problems, and fatigue. Now I’m finally starting to feel more like myself again, although the fatigue is still very present and I also still have some nerve-related stuff-like tingling and occasional muscle twitches in my legs and feet.
Really hope your husband doesn’t have any more relapses and that he starts feeling better!!

Thank you very much for sharing, Hassel. It's helfpful to know that recovery may not be a straight line but, anyway, keeps moving forward. My husband is experiencing that. I'm happy you're finally starting to feel more like yourself and I wish you a full recovery!

Hi. I was diagnosed with GFAP astrocytopathy in June 2024 after a month of worsening viral symptoms eventually getting to the point where I was running a high temperature, vomiting and fainting. I was admitted to hospital and they carried out various tests - CT, contrast MRI, bloods, lumbar puncture - from which they diagnosed GFAP astrocytopathy with a ddx of Sarcoidosis. 2g IV Prednisolone/day for several weeks before I was discharged on 30mg oral Prednisolone. Been trying to reduce it but can't seem to get below 20mg before I deteriorate cognitively. In Feb I was started on Mycophenolate in an effort to suppress my immune system so I could reduce the Prednisolone. No progress so far so I have now been instructed to increase the Mycophenolate.
In the background, I am also doing other inflammation reducing therapies - hydrogen via nasal cannula, tpbm therapy, nutritional support and I am also about to start LDN. I am also awaiting a referral to see an autoimmune specialist neurologist with a view to undergoing a brain biopsy and metagenomics test which might identify the root cause e.g. bacterial or fungal infection, virus, parasitic etc. i.e. something treatable as opposed to manageable.
Symptom-wise I am stable cognitively but so fatigued I can sleep 18 hours a day and very wobbly and weak. Neuro symptoms include burning to limbs and reduced sensation, as well as increasing weakness in limbs e.g. gripping is becoming a challenge.
Best of luck to you all with your journeys. Please keep this thread updated as there is so little known about this disease that we need each others inputs and experiences to grow our knowledge.

@abi66
Thank you for sharing, abi66.
Only some of your symptoms are similar to those of my husband (vomiting before beign diagnosed, fatigue now) but he also tried to reduce Prednisone and couldn't get below 10 mg: with 5 mg his lack of balance and cogntive fatigue worsened. Prednisone is the only therapy he is doing and makes he feel nervous and irritable, with no progress. That's why they decided to change the therapy, he is now waiting to start the Rituximab therapy (which is here off-label, so it takes a while to get all the permissions).
Hope your journey is going well!

Hi @simonefromitaly
Your husband has followed a similar pattern to me for sure. I couldn't drop below 20mg Prednisolone before I became confused and was struggling with speech. I'm on LDN now and have slowly reduced the Prednisolone by tiny increments. Now on 15 and doing well so far. Hope your husband has success with Rituximab - my neurologist suggested that for me too but I decided against it due to the side effects.
Good luck with it all. Keep us posted.

Hello
My husband was diagnosed with probable GFAP in October 2023. (Tests for GFAP were abnormal, but not conclusive.) His symptoms started in late July 2023.
His symptoms were similar, started with fatigue and persistent dry cough. Then confusion, he became incontinent, and had balance and ambulatory problems, then came the hallucinations, catatonia, and psychosis.
He was hospitalized when I couldn’t get him to eat or drink.
He was was given antivirals and high dose IV steroids. He responded to steroids really quickly. He was sent home in about a week. However he wasn’t given an oral steroid taper. He was doing great at first, but after about a month he started coughing and having balance issues and confusion again.
His MRI showed dramatic improvement though.
Another LP showed that he had increased protein in his CSF.
Finally he was put on oral steroids (70mg daily) and started on Mycophenolate. Again, he rapidly improved.
He tapered down by 10mg each month. When he got down 10mg daily, he started coughing again and having double vision. His doc immediately increased his steroids to 20mg daily. He started tapering that down very slowly. Finally (3 mo?), he increased his Mycophenolate by 1/3 and took him off steroids. He’s been fine for several months now. Doc said he may be on Mycophenolate(immune suppressant) indefinitely.
He also said MRIs can be a lagging indicator, and might not show increasing inflammation right away. Apparently the protein levels in his CSF was a big red flag for inflammation.
I’m sorry for this post being so long, but I would ask your doc to up his steroid dosage, and ask about Mycophenolate or another kind of immune suppressing drug.
I’m so sorry you and your husband are going through this. It is a long bumpy journey, but don’t lose hope. My husband is pretty much is old self again. Still has minor mobility issues, but all in all, we have been very lucky!

Agree with this post wholeheartedly. I was diagnosed with GFAP in June 2024 and the IV Prednisolone 2 grams/day) worked well while in hospital. I was discharged after 3 weeks on 40mg oral Prednisolone. Started to taper down but couldn't get below 20mg. My neurologist put me on Mycophenolate but I still couldn't reduce without cognitive impact. Neuro increased Mycophenolate and I'm currently down to 17.5mg. I'm also taking LDN which has helped enormously with energy, motivation and stamina.
Don't give up hope. I almost did and I'm so glad I hung on in there. All the best to you on your journey

My son has been diagnosed with Autoimmune GFAP astrocytopathy at 8 years of age.
If you google his name Leo Burgess-Scrivens it will bring up his journey for you to read through.
It's a very lonely disease as every question is answered with "I'm not sure, it's so rare there are only case studies".
He was 8 when he became unwell on January 4 2025, 4 days into our holiday. From first symptoms of headache, persistent fevers, eye pain, light avoidance, I took him to hospital and within the week his bladder & bowels stopped functioning, he became totally paralysed, constant hallucinations, eyes constantly rolling into his head. We were transferred to the major hospital 5 hours away. When we arrived he was placed into an induced coma. His stomach was no longer digesting food and his lungs stopped working. He had a brain and spine MRI which showed the entire brain, spine and meningis were completely swollen.
Then his lungs started collapsing. Every test they did came back negative, in total 6 lumbar punctures were done.
After a week he was flown interstate to a children's Hospital and received 8 rounds of plasmapheresis, 4 rounds of ivig, high dose intravenous corticosteroid. They continued treating him for everything until tests came back negative. Finally a positive marker for GFAP came back in one of the lumbar puncture tests.
After a month in ICU he slowly started to wake up, still totally paralysed and intubated.
It took 5 months of intensive rehabilitation at hospital to regain movement. He is still predominantly in a wheelchair. He requires intermittent catheterisation 4 times a day, the neurologist that saw him yesterday discovered he has absent left Achilles reflex, absent left abdominal reflex, he has had multiple brain and spine MRI which we looked at. Even though the improvement is mind blowing, due to how severe the swelling was in the first few done, he still has multiple white matter lesions in his brain and spine.
He has started having sharp pains in the left side of his brain and his left eye becomes bloodshot when this happens.
I wish I had someone who is living this experience with GFAP to talk with, someone who understands as it's a very lonely disease to navigate with no support group's/ organisations due to its rarity.
I am silently scared of a relapse, he went from 29khg to 45+kg in a few months due to high dose prednisolone and inability to move.
I am worried about the long term/life long health implications of this disease as it's just a wait and see situation.

@michelle1303 Welcome to Mayo Clinic Connect. I’m glad you found the site and we’ll do all we can to get the information you need. Members share their experiences and what worked/and didn’t work . This must be such a difficult time for you and your son and we will do all we can to help.