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.

When I was a diagnosed with PMR 2 1/2 years ago I asked my PCP for the least amount dose to be effective. She prescribed 15mg and that worked for me. I have never had a big flare up where I needed to increase until I got to 1 mg. I’m on 2 again for a couple of months. My rheumatologist had been a believer of slow taper.

I read that Osteopenia induced by Prednisone is treatable. Do you have that or Osteoporosis. A biologic for PMR WAS JUST APPROVED.