Can you treat GCA with betahistamine?
betahistamine: Can you treat GCA with betahistamine? - PMRGCAuk
betahistamine
Written by
PiaLarsson
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12 Replies
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Do you mean bestahistine as used for Meniere's?
No. Corticosteroids and tocilizumab in combination with steroids are the only current options. And don't mess about with trying alternatives - you could end up with irrevesible loss of vision.
Yes, and I am aware that this drug only affects the inner ear. But I think the GCA is currently affecting my ear very much and making me very dizzy. And instead of taking more prednisolon/MX I would complement those drugs with betahistamine. I will of course discuss this with my rheumatologist.
To be honest having had GCA, I'd rather increase the Pred to address the inflammation issues than add in another medication which just controls the vertigo side of things.
So please discuss with Rheumy..
It won't work. If your GCA involves the ear you are risking deafness if it isn't managed properly. Betahistine may help the symptom - but the underlying cause won't be touched.
The charity got some research started showing the 8th cranial nerve is involved in GCA - the same applies to that nerve as to the optic nerve in visual loss in GCA. Really not worth the risk - nerve damage rarely heals.
Like DL, I’d much rather address the worst cause (arterial inflammation) with an increase in Pred than to treat the symptoms only. I lost some hearing due to untreated GCA at the beginning during which I had worsening motion sickness in the car. I now have permanent tinnitus.
I also have possible Meniere’s and/or BPV (benign positional vertigo) and in severe cases they use steroids anyway. I find doing my own Epley manoeuvre (plenty on YouTube) beneficial and reduce salt intake which is extra important when on Pred because one retains sodium. Pred on doses above 20mg (I think) gave me a swimmy head too.
It’s worth getting someone to have a look in the ear to check for impacted wax, fluid behind the eardrum, particularly if you’ve had any sort of upper respiratory infection in the last few weeks.
Has betahistamine been suggested by your doctor?
No, I happened to read about it in the Guardian. It was used as treatment for a patient suffering with autoimmune inner ear disease (AIED). This patient, Eliza Barry Callahan, had written a book about it called The Hearing Test.
But GCA isn't an inner ear disorder - it will relate to blood flow to the 8th cranial nerve.
I know GCA isn't an inner ear disorder. But since the GCA is affecting the 8th cranial nerve I thought that maybe the betahistine would increase the blood flow in the inner ear and so make me less dizzy. But I'm not going to be able to test this theory because my doctor doesn't even think my dizziness is GCA-related. He wants me to see a GP to check if there is something wrong with my heart or my ears! Why don't rheumatologists know about the 8th cranial nerve dizziness? But he said I could increase the prednison dose and hope for the best. So that's what I will do now
The paper was published just before Covid and probably went under a bit as a result. You have the link - hand it over with "you may have missed this".
I did hand it over to him and he read it. Then he said it wasn't the GCA that was causing my dizziness! And suggested I saw a GP. But I have had my ears checked recently and there's nothing wrong with my heart. I don't think rheumatologists know enough about GCA, it's as simple as that. They are only interested in rheumatoid arthritis.
I do agree with that final comment - but to be fair there are some cracking PMR and GCA specialists.
It was very clever of him to know it wasn't the GCA - Crystal Balls again.
