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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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@swalex Hi, I picked up on 29 May 2026, 5 days afterwards I was hospitalised, went for MRI and no damage detected, lumber pucture picked up I had GFAP, started treatmeant on 12th of June 2026. Finished taper down course and end of July Docter told me to get back into routine, felt beter and did light excersize. End of Septeber I had a fe bad days in September it was getting worse again going back to emergency today After talking to Dr yesterday. Apart from gfap I feel perfect, I had almost no flue before first time diagnosed with gfap, I was training for marathon and was fit. When speak to dr in hospital he said he left no stone unturned, so they also tested me for everything before realising that I had GFAP, I do not think that he did MRI if complete body
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1 ReactionI am always struggling with allergies and sinus, not sure if this could have been a trigger.
And what doc meant by no stone unturned I am not sure if the tested for cancer. But they did look at all markers, poisen, drugs and alot more.
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2 Reactions@kevinv777
Thank you for your answer.
You mentioned sinus problems, which could potentially be relevant given the proximity of the sinuses to the brain and surrounding neurological structures.
GFAP astrocytopathy can present with an unusually broad range of neurological symptoms, which can sometimes make diagnosis challenging.
A high-resolution 7-Tesla MRI might provide additional information, particularly if you have experienced symptoms such as headaches, neck discomfort or stiffness, numbness or other abnormal sensations, difficulty walking, or problems with balance or coordination.
I sincerely hope that your condition stabilizes and that you reach a point where you feel better and experience some relief from your symptoms.
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1 ReactionHad another MRI taken today.
Also lumber puncture. Neurologist said the did test in June and picked up GFAP
However, today with lumber puncture he took additional fluid to be tested to narrow down on the GFAP findings.
He also said that after finding comr out he treatment will change. Not sure yet wat. But high dose of 1000mg of cortisteriod did not keep it away. In the mean time while we are awaiting further results i will be on 10mg predisone to assist with current symptoms
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1 Reaction@kevinv777 current symptoms is not as bad as what i have experienced in June.
Current :
Nausea
Headached pounding
Extreme fatigue
Double vision
Preasure feeling on top of head
Extreme pain on neck and going down into traps.
Balance issues .
Last night confusion.
First symptoms in June:
Passed out a few times
Extreme double vision and later losing vision for several minutes
Preasure on head.
Speech slurring, extreme confusion and memory loss.
Very bad balance isues and headaches
Nausea,
Sensitivity to light very high
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1 Reaction@kevinv777
My husband got better after an immunoglobulin therapy and steroids, but especially after Rithuximab (without steroids two cycles in a year). Now, 21 months since hospital with GFAP, he feels almost as before GFAP, he walks every day 5 km + 2 km easy run, no balance problems. (In the meantime, in April, he had a minor heart attack and stent procedure due to high cholesterol, but this is another story...).
Have patience, you'll see things will turn out fine!
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1 Reaction@simonefromitaly also going for full body scan this comming monday, full blody results seems all normal