What steroid dosage did you start on? Did you find the right dosage?

The test for inflammatory number is. Serum Proteins (C Reactive protein)which is a protein produced by the liver when there is an abnormal amount of inflammation in the body. The normal range 1.1 to < 5.0. My first test was 23 , in 1 month I was to a < 3 . Now after 1 and 3/4 years i am @ 1 my medication of prednisone 2.5 mg most of the time to 5 mg when I get a flair up for 7 days then back down to 2.5 mg
sirmac

I started on 15 mg for 2 weeks then 12.5 for 2 weeks then 10 mg for 4 weeks then 7.5 mg for 2 weeks then 5.0 mg for 2 weeks then 2.5 mg for as long as it takes. Because of flair ups I am on 2.5 mg to 5.0 mg 2.5 mg is normal, when I get a flair up I go to 5.0 mg for 7 days then back to 2.5 until the next flair up . I get small flair ups that last for 1 to 1/2 hours , I just stay on the 2.5
sirmac

Thanks, I'll ask my numbers today.

Hi @reets70, I have been prescribed both methylprednisolone and prednisone and have adjusted my dose accordingly. My rheumatologist told me that a few patients had responded better to one than the other but I could tell no difference in pain reduction. I have issues with this medication causing watery eyes and it is worse with methylprednisolone. For that reason, I currently take prednisone. Hope that is helpful. Good luck!
Sandi

Hi reets 70. Are you still taking methylprednisolone? If so, how are you tapering from 4mg since that is the lowest dosage of that drug?

I cut in in half. I feel pretty good so far, and the doctor told me it’s fine.

I took a stab at 25 mg to start based on an article I read that suggested so much per pound that you weigh. Pretty pain free, shoulders are still very weak. Can't see rheumatologist until late August so I'm trying to do a bit on my own with my PA. Go to try a very slow taper

Just diagnosed last week, hadn't ever heard of PMR but sounds right. PMR affects my upper arms and shoulders, terribly painful in the morning becoming liveable as the day proceeds with Tylenol and Advil. I'm a 79-year-old woman who already has high risk osteoporosis - explained to me as meaning that any fall has a 20% chance of breaking bones. The doctor recommends starting with 15mg. The idea of losing more bone mass is terrifying, but so is PMR, particularly with the possibility of Giant Cell whatever-it-is (I keep imagining this is a cartoon creature planning to sit on me).

Looking around on line, it seems as though there is no choice but to take prednisone. The condition won't go away by itself and won't get better. Right now it feels as though I'm doomed either way. I was hoping that prednisone might improve sleep, but possible side effects are insomnia and restlessness. There's weight gain AND bone loss. Crankiness (I majored in crankiness.). With other medications I've tended to do well with smaller than recommended doses, but these are steroids. Is there a minimum effective starting dosage? I'm taking Alendronate once a week for the osteoporosis.

Hi there- I can relate to your concerns. My dad is the one with PMR, and he had similar concerns as you with his intolerance to medication—down to the tending to do better with smaller than usual doses of medications. He’s a person who still can’t tolerate one Tylenol; he gets groggy and extremely tired. But you’re right, and there’s not really a way around it—the risks of prednisone are typically going to pale in comparison to what you could lose our on in pain (which if not managed quickly or properly can cause changes in your nervous system to become chronic pain even after the original illness goes into remission), quality of life, and then there’s the chance of GCA to contend with.

This is completely anecdotal, but from seeing others’ posts and from what my dad’s rheumatologist said to us, it seems fairly common to start at least with 20 mg or more (?) My dad started with 20 mg, which turned out not to be enough—if improved for 2-3 weeks before flaring again, so she put him on 30 mg.

As for the side effects you mentioned, at 74, post-stroke and rehabbing, there are concerns about bone loss with long term prednisone, so his rheumatologist out him on Alendronate. Despite all the warnings on that, he seems to do fine with it.

He definitely did have issues with insomnia when he started the prednisone, but he adjusted after a few days. He’s sort of an anxious person too, so that didn’t really help because he was refusing to do attempt any sort of relaxing activities or disrespect himself.

It worked best for him to take his prednisone in the morning. Others take it before bed and I guess the theory is by the time the side effect hits you, it’s time for your to get up in the morning? And for those who have really had early morning stiffness, it can help with that. Some people split the dose.

I guess I’m trying to say that while prednisone is a double-edged sword, it’s the first and most accessible tool we can reach for, and there are ways to manage the side effects, even if the whole situation is not ideal and it does feel like being trapped into a corner or “doomed.”

Also lol to your comment about imagining GCA as a cartoon character. It took me forever to remember how to pronounce “arteritis”!

Wishing you all the best.

My rheumatologist wanted me to start on 15 but I talked him into starting on 10 which has worked for me. Dx in April, now on 8 and soon to go to 7. I, too, am very sensitive to medication and less is usually better. That said, I am also doing everything I can think of simultaneously to support the process: anti-inflammatory diet, hbot, pemf mat, b12 shots, supplements, epson salt baths etc. from reading these forums, it appears 10 mg is lowest dose people have started on.