Does anyone else feel isolated and misunderstood?

No. I had similar story but 20 mg. And 3-5 days later it was like night and day.
Hang in. Talk to your Doc and maybe start 20.
For it was 9 mos.ago I'm down to 1 mg. Every other day. I pksy golf regularly

@rooster65 Thank you! That really gives me hope!
I am going to give it a couple more days and if I don’t see much improvement I will call my rheumatologist.

Good plan. Hang tight ,you'll see.
Let me know
Peter

As others have said , 15mg is sort of the starting dose to see how you react. It may take a bump to 20mg. maybe even more for a few days. I think most of us suffered trying to figure out why or how you can go from very active to not getting out of bed. I took dexamethasone 4mg which is equivalent to about 20mg prednisone. I was back to normal in 4 hours. when you find the dosage that works then back off to where your on your lowest possible dose. Mine was about 10mg equivalent. This can be a long ride and the steroids are going to wreck your body.

You are so not alone. This group is a savior. Ask any little question you can think of. We are here for each other.
You might ask Dr abt splitting dose am and pm. That helped me.
Also, my dr told me I could supplement with Tylenol for ARTHRITIS, up to 4 pills a day. Maybe try 2 of those one morning, if it helps, then may need to up prednisone for a few days.

Keep a journal of daily meds, pain level, pain places, food weight etc. You will be surprised how it helps. You know more abt yourself than the drs. and that’s key.

Reminder YOU ARE NOT ALONE, anymore.

I started at 20mg. It should get better.

@tweetypie13
Thank you so much for the feedback. I have read about splitting the dose but I had also heard that prednisone can cause you to not be able to sleep? That’s a good idea about keeping a journal of meds and pain. I will do that. I thought I would give it until Monday and if I’m not doing better then I’ll call my rheumatologist. I really appreciate your advice ❤️

Through blood work, I was diagnosed with PMR in 2023. My rheumatologist started me at 20 mg. of prednisone. In one day, it was a miracle - no pain. After weaning off prednisone (took 1 year and 2 months), I am getting an infusion once a month (Actemra). He wanted me OFF prednisone/steroid. I have had PMR since August, 2023 - on prednisone for 1 year and 2 months - infusion helped me wean off faster. They told me the PMR should go into remission at some point....but, hasn't yet. I know, disappointing, isn't it? I feel it has affected muscles - weakened. I try to exercise (min. 7,000 steps and up per day) I am 82. (I still feel some pain in the mornings at neck, shoulders, arms between elbow and shoulder - but tolerable).

It’s my understanding and my experience that prednisone works within hours. If you haven’t gotten relief after 3 days I would think your dosage is insufficient or your diagnosis is incorrect. Sorry to muddy the water but it’s worth re-evaluation imo

Sandy, first sorry this is so long. I went through a similar deal in July, August and September of 2024. I woke up one morning and could hardly get out of bed with pelvic girdle, shoulder and clavicle pain that radiated down into my biceps. I went to my primary care doc. He, like me at the time, thought it was a an exercise related thing - at that time, I was running, swimming, lifting and doing HIIT on a stairmaster. He put me in PT, but it didn't help. So I stated researching and ended up self diagnosing. It took forever to get into a rheumatologist in November 2024 for various reasons including turning 65 in September and getting switched to new docs in my MC Advantage plan; he put me on 10 mg of prednisone. My research included looking for anything on the appropriate starting dose. I found one peer reviewed study done by NIH in 2011. It recommended 0.2 mg of prednisone for each kg of body weight. At that time I weighed 110 lbs (or 50 kg), which meant 10 mg per day was the appropriate dose. The original plan was to reduce the dose by 1 mg every 30 to 45 days, depending on pain level. Within 3 hours of that first 10 mg dose, the pelvic pain was gone and has not returned, knock on wood. The shoulder and clavicle pain has never gone completely away but I'm still lifting, albeit at lower weights and reps. I was way better.

I'm at 3.5 now and it's been a journey. My research indicated that starting doses were all over the place, without any reasons given. Some docs started at 10 mg a day, while others start at 20 or even higher, then try to get you to taper way too fast. I'm lucky my rheumatologist is open to me making decisions with his input of course.

One thing I'd consider if I was you if the 15 mg per day doesn't start offering relief, is weight based dosing. Convert your weight to kgs by multiplying your weight by 0.45359237 then multiply that number by 0.2 to get your dose in mg/day. As I've tapered I've made myself lose a few pounds to give me the best chance at getting through this. I started doing 12 to 14 day transitions when going down in mg per day and I started going down 0.5 mg instead of 1 mg. I started this at 5 mg because the 1 mg transitions at 7 and 6 were especially rough.

I currently transition as follows: old dose, old dose, new dose, old dose, old dose, new dose, old dose, new dose, new dose old dose, new dose, new dose, old dose, then start straight new dose for 30 days. It's worked decently for me so far, fingers and toes crossed. I hope this helps you. Good luck!