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Relapse after GFAP
Hello everybody,
my husband was diagnosed with GFAP in February 2025, he spent more than three months in hospital and in March he came back home, he was recovering well but now it seems he is relapsing, even if the latest MRI and spinal fluid were ok. I wonder if this has happened to anyone else...
Here is his story.
In January 2024 he was diagnosed with Myasthenia gravis, even if he didn't have positive antibodies for this disease, he sometimes had swallowing and speaking difficulties, as if his tongue was anesthetized, and sometimes his eyelids drooped. He took Mestinon.
In December 2024 things worsened, he had serious balance problems, nausea, threw up, tiredness, and he was admitted to a hospital: they did all sorts of exams, he took antibiotics since it seemed he had a brain infection. They excluded Myastenia gravis. At the end of December he couldn't stand, not even sit, needed to be intravenously fed. Then, when all exams for infections resulted negative, he started a theraphy with high-dose corticosteroids and intravenous immunoglobulin (IVIG). In February he received a GFAP diagnosis.
He got better and after two months of rehabilitation he got home.
He is gradually decreasing Prednisone and he is still taking antibiotics.
But in the last two weeks he feels again balance problems and gets easily tired, even mentally. The doctors assured him everything is ok and to go on decreasing Prednisone and stop taking antibiotics at the end of April. We can't understand why he is relapsing while the exams are ok...
Has anybody had a similar development?
Thank you
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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.
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1 ReactionI 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!