← Return to GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

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@grammy82

No ringing in the ears; I know that must be beyond difficult. After three years, I have lost muscle mass and strength. It took me over two years to get to 10mg. My skin was very thin and tore quickly, and my body 'bruising' often made me look like a leopard. I've heard of other things, but I have not gotten them. I still have capillaries that burst with no touch. The fatigue of the disease is much better, but I still treat my energy like money in the bank and am careful about how I withdraw it.
I've been on Actemra for three years, also. I hate to think of what it would have been like without it. My case of GCA went for almost a year undiagnosed, and it was tough to get it to simmer down. Once, I admitted to myself that I had to listen to my body...that GCA was the boss and I could help manage it. I used to nap daily for a few years but don't anymore.
At present, I take 3mg per day and still take Actemra. I know there is treatment for tinnitus. Have you been to an ENT specialist? Hope he/she can help.
It is a journey, to be sure but the good news is it ends.💞

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Replies to "No ringing in the ears; I know that must be beyond difficult. After three years, I..."

It's been discovered that Tinnitus comes from the brain not the ears. I am trying Menthol essential oil as it does good things for the brain. It only took three days of my using it for the loud orchestra in my head to close up for the night. I sometimes get a little faint music but none of the full orchestra performance of the past. Don't expect your ENT to have heard of this it's a new discovery and, I believe, as it's classified as an alternative medicine they can't talk about it.

There is NO treatment for Tinnitus that am aware of. There are a number of "snake oil" ads on the internet though--don't trust them. My wife has had it for many years and been to every specialist and no one can do anything about it. She actually thinks giving up peanut butter and bananas might have lessened it a little. Sounds strange, coincidence or something else? But if so, what else? She just lives with it but is always aware of changes in the tone or intensity and tries to think back to what may have prompted the change. She also has substantial hearing loss and can verify that your ability to hear has no bearing on the tinnitus.