Curious to know if anyone on the forum has any info/experience/data regarding GCA? Turns out, I have this too - ratcheted up a few notches in May. Diagnosis confirmed by 4 separate and independent doctors. They all told me there is no connection between GCA and Meniere's. None. What do y'all say? The temporal artery is located behind the ears - so... it seems clear one might affect the other, even if they are not directly connected. In my case, all my GCA and Meniere's symptoms are more severe on the left side - which is also my weakest ear. Over the last few years - I've lost all bone conduction in my left ear only. I have a separate bell tone ringing in my head constantly, usually centered behind the left ear. My left arm and shoulder are weaker than my right. To my mind, the overlap is obvious. But they insist - these are not related. GCA is an auto-immune disease - they don't know what causes it. Sounds familiar? So - looking for any insight y'all might have. Thanks in advance - and Fight On !!! JMC
UPDATE to the GCA diagnosis and treatment. GCA was confirmed with a biopsy of the artery - mucho inflammation with some plaque buildup - but no Giant Cells observed... So - I am on a prolonged daily dose of Prednisone, 60 days at 60 mg./day. Tapering off started 2 weeks ago, while we replace the Prednisone with an injectable anti inflammatory which is supposed to target the temporal artery specifically. BUT HERE's THE THING... I can hear much better now since the prednisone has been in my system. My left ear is still weak, but I can hear well enough to play my guitar again - even been out to 2 laid back guitar circle song swap sessions in the last few weeks. So ... that's something. Obviously, I can't keep up Prednisone forever - it's already tearing holes in my stomach and keeping me from sleeping normally. But if this other thing will keep the inflammation at bay and I can still hear w/o the prednisone? I'll be a happy man again!!! Fight on!
Now in week 8 of the prednisone combined with non-steroidal anti inflammatory. I can definitely confirm my hearing is improved - so much so that I don't put my hearing aids most mornings and sit here at my desk listening to old records, or playing my guitar... Where the ENTs all said it would never happen, it has. So there it is - I am going to be turning up to 10 and blowing out the neighbors !!
Awesome to hear your results. My doc has me on prednisone right now trying to settle my ear down. I also had an injection into the ear last week. I will be going in for two more injections as well as running this course of prednisone. Do you know what the anti inflammatory is they are injecting? I had a surgery on my arm about two months ago. The following two weeks after surgery my ear felt the best it has in years. I don’t know if it was something in the anesthesia, anti inflammatory or the antibiotic. I am just trying to narrow down what might have made such a huge impact. Keep us posted and keep on rock’s. I have not been able to bring myself to sit on my drums for quite a while now. I hope things make a turn for the better as they have for you.
Hey - the injection anti inflammatory is called Actemra. So far, it is working... but there are side effects. Once I know more, I will post the summary here. In the meantime - I've been playing a songwriter's circle every other week, bunch of guys playing acoustics and singing their tunes, I'm working on an album project - 2 scratch track sessions done so far, and I played an open mic session the other night... I can hear well enough to play again, it is glorious..!! Still got the damn GCA though... Fight on!
So glad you can hear well again, that is truly amazing. It is worth noting that Actemra works by blocking IL-6, noted for many inflammatory and autoimmune issues. Natural inhibitors of IL-6 are Vitamin C, Vitamin E, curcumin and a generalized anti-inflammatory diet. I am personally convinced that for those who are not helped by anti-virals alone, an anti-inflammatory approach is the key to keeping this disease at bay. I hope you continue to have improvement, and if the side effects become too bothersome, perhaps you could try the natural inhibitor approach as a backup plan (or in combination).
Thank you FloridaKatie...!! One caveat - I'm only starting my 10th week on the Actemra. The rheumatologist said I should expect 18 months treatment for the GCA, if no significant side effects develop. Too early to tell yet, blood work etc. every 4-6 weeks, so ... When I say "I can hear well enough to play again..." I am saying - I can hear just barely well enough, and I'm still hearing pitch distortion - eg. when I play an A chord, it will sometimes sound like something else entirely, depending on what else is going on. But I'm playing again, and that's the best possible news after all this time struggling. I'm trusting my fingers more now to find the right places to land on the neck...! I'll keep the updates coming - if anything major changes. I'm to be tapering off the prednisone over the next 12 weeks, as per the doctor's orders - the Actemra is supposed to be taking its place. I keep a pretty good diet already - but I can do a lot better, I know! Cheers all - and Fight On..!