GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

What kind of side effects from the prednisone did you have? ...Any ringing in the ears?

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.💞

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.

I'm so glad you got relief....no, I'd not heard of using Menthol. I'm sure you would give it five stars and rightly so. If I ever hear that orchestra, not I know how to silence it~!💞

I was diagnosed with P.M.R. 2 years this August was prescribed prednisone 3 .5 mg tablets / day for 2 weeks, the 2.5 for 2 week , then 2 for 4 weeks then 1.5 for 2 weeks, then 1 for 4 week then .25 mg . when i am on .25mg i start to det an head ache, my temples ache, my neck and shoulders ache and my hands and fingers ache like and tingling burn. My dock re prescribed prednisone .25 to 1 5mg tablet /day. there are time when I am no the .25 tablet the body pain including head ashes and temple aches to the point of felling nashis. I go back up to 1 .5mg pill, the pain will go a way but after 5 days or so I start to fell the pain again. drop back to ,25 mg so far not to bad we will see

Hello @sirmac, Welcome to Connect. I'm a little confused at how much prednisone was prescribed for your treatment. Does "3 .5 mg tablets / day for 2 weeks, the 2.5 for 2 week , then 2 for 4 weeks then 1.5 for 2 weeks, then 1 for 4 week then .25 mg " mean three 5 mg tablets per day (15 mg) for 2 weeks, then 10 mg for 2 to 4 weeks, then 5 mg for 1 to 4 weeks and 2.5 mg after that?

You mentioned your head and temple areas ache which is a symptom of GCA and a lot more serious than PMR. GCA normally requires a higher dose of prednisone than PMR. It sounds like you might be tapering off of prednisone too fast.

Have you thought about seeing a rheumatologist who has more experience with PMR and GCA?

I have GCA and I'm sure a touch or two of PMR.
I wanted to share this with you~~my first boss, an orthodontist and his lovely wife, a nurse, and I have been friends for over 40 years. The night I was taken to the ER because I was suddenly blind in one eye, I vaguely recalled some things he had said years ago; 23 to be exact. It was something about PMR/GCA, autoimmune, steroids...in kind of a fog on the gurney, I called him. Yes, his wife had both, and no matter what, if she stopped that last milligram of prednisone, her symptoms returned. So, for over twenty years, she still took 1mg each morning. Maybe that is what your body is saying.
There is a rheumy in England, Dr. Bashar Dasgupta (well known and respected), who simply believes some patients can remain on low doses for life with no problem. At present, I am at 3 mg after three years and will continue to reduce at .5mg every three to four weeks (after a trip), and we shall see.
Hopefully, that story about Pat helps. Some of us get so caught up in getting off pred that we feel guilty if we can't. No personal involvement is involved, your body talks to you. If your body says no...I know if I wound up on .5 or 1mg...I'd be happy.💞

That’s such a great point. It’s okay and normal to feel disappointed or even guilty for needing to take a medication a long time or lifelong, as long as we can remember it’s not our fault. As my dad’s rheumatologist says: “We need to follow what the body decides and go from there.” Cheers!

Swollen feet and legs.
Cushy (I looked like a cabbage patch doll) which, after I was off it, left my old, non elastic skin, with major wrinkles.
Glucose reading of over 400 (up from 85-95 normal).

It is so true...we somehow feel responsible...or accountable for 'taking' steroids. I think the thing is...No; it is not an ideal drug so we get all that negative feedback like telling a child...bad, bad, bad. Well, in some cases, it is all we have.

But, it is a lifesaver and our only sword to do battle with some of these diseases. I want to move. I want to see. I will deal with the side effects in the process.

When we need to take it...our body needs it to help us manage the disease. Our body will tell us when we can end the relationship. Yes, Pred can be difficult, but the consequences of not taking it can be worse.

My goal has been a decent quality of life. 💞