Newly diagnosed PMR, still in shock - fighting it, sharing, learning

Search this site for any and all things
An old post of mine…..
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'm so sorry you're here on the one hand because of the PMR, but glad you found this support group because it really helps. I'm like you, N. Eurropean descent, 73 yr old woman, with similar totally debilitating pain, brutal unrelenting pain, in many same areas and the weakness, stiffness, and into my fingers and how it lasted well into the day every day and how it'd start again every night, middle of the night (1-3am). I couldn't function at all. This went on from Mid-March till 7/31/26 when finally got diagnosis. I'd been trying to figure out what was wrong with me for months. No one else could. It was only some iron, ferritin and CRP, ESR blood tests that gave me the info to search with what my symptoms were. Previous blood tests ruled out RA, ANA, etc.
PMR came up and matched so closely. I got in with Rheumatologist via cancellation list too!! My appointment was 3.5 weeks away so I called and asked to be on cancellation list. Got in 2 day later. What else wakes people up with this kind of pain in middle of night? And these wierd symptoms? It's bizarre. So glad you got enough Prednisone to finally help you out of this pain. I had to go from 15 up to 25mg myself. I truly empathize with you about the pain, and no, people can't possibly comprehend the level of pain unless they've experienced it. . Been there. Don't care to go back if I can possibly help it!! Hope you get all the care you need. Blessings.

Welcome to a club no one knew existed, no one wants to join and no one understands "why me"!
Just to set the record straight, PMR is chronic and even if the first course of prednisone is successful at putting PMR to sleep, always remember it is not gone, it is sleeping. Next topic is even if the PMR is not doing damage, the prednisone long-term can-do damage. I have had PMR since April 2019 and multiple rounds of prednisone did not successfully put it to sleep. Typically, PMR burns out in 2-3 years. Current school of thought is if it is still with you after three years then there is cause to do exhaustive investigative work to find if other problems are at play. A year ago I was Dx with asymptomatic Giant Cell and that has done damage.
Follow your Rheumy's guidance. I can tell you in the last five years they have become much more standardized in treatment. You will see that there is never a one approach solution.
Please know that you are in this for the long game and there is not a quick solution. If you are fortunate enough to have PMR go into remission with your first round of prednisone, even that will take a year or more. Slow and steady is a guideline that you need to cling to. We all want to speed up the tapering process, that is possibly not in your best interest.
Again, welcome and please stay active and ask questions as you navigate the disease and the associated processes.

@nlcarl ....I posted a very similar post about three weeks ago (you can find it by looking back through the posts)...the way you describe the onset is so very similar to me. I'm 58, very health conscious, regular cyclist, try to do tghe right things. When i got the bi-lateral shoulder pain and collar bone pain I was initially sent to physios and thinking it was a trapped nerve or spinal issue or even rotator cuff. Then like you, I had the spread, hips, upper arms, glutes, hamstrings. Horrible morning pain like I had never exp[erienced before. Three week later I'm pain free and now on 12.5mg and next week dropping to 10mg. I really worry about taking steroids but i guess they are a neccessary evil to tame this beast. I'm not getting aheda of myself as I knoe the tapering can be complicated and setbacks might happen but staying positive is a key thing and also managing stress levels better. I've already taken very much a back seat with my job and so far they have been quite understanding and told me to prioritise my health. I'm so glad to hear your pain has more or less gone. Good luck with the tapering...

@nlcarl I am glad you are feeling better. I know many on here will say that they wanted to try and wait this out before taking prednisone but I agree nothing fixes the symptoms quite like prednisone. I was immediately able to get back to my activities. I would read all you can about the side effects of prednisone and realize that it is the devils tic tac. Many have posted articles and a google search will help. I felt lucky to be off in 6 months but even now 5 years later I am taking medications that I didnt before. Good luck on your journey.

PMR is definitely one of the most painful things I've experienced. I agree that the possibility of side effects from prednisone didn't factor into the equation of whether to take it or not. If my rheumatologist would have assured me that eating dirt would eliminate the pain, I think I would have tried it.

Thank you all for your individual comments. I am on the wait list and a booked appointment in 4 weeks. I got a script for prednisone 5mg per day to get me through the wait to see the Rheumatologist. I don't think that is going to be enough to get me under 5/10 over a 24 hr. period. Messaging my PCP about this today. I provided the daily log I kept when I started this dose pack showing dose, timing, pain levels etc. I will challenge the 5mg. Mentally I am ready, thanks to all of you. Now let's get to where I own all my ADLs.

I’m glad you found the group. I’m new too but not new to PMR. Prednisone can seem like a miracle drug, but it is a double-edged sword. It can cause bone loss. You said you had been active, so I encourage you to be as active as you can. The good thing about activity is that PMR symptoms tend to abate as you move around. Before I got my diagnosis, I sometimes spent extra time at the supermarket pushing a shopping cart up and down each aisle. Talk to your doctor about calcium. I also encourage you to add an endocrinologist to your health care team. Prednisone can cause blood sugar and LDL both to rise and can lower HDL. An endocrinologist will be able to know if any changes are due to the drug. My PCP was freaking out, and my endo and pharmacist kept saying it was the prednisone. They were right, and I could actually graph a correlation between reduction of prednisone and a reduction in cholesterol and blood sugar. I’m back on prednisone for prednisone withdrawal probably triggered by an inflammation in an old root canal. To combat a rise in LDL, I am eating 7-10 grams of ground flaxseed every morning. Also we are moving into the time of year for annual vaccinations unless you are one of the members in the southern hemisphere . Talk to your rheumatologist about a temporary bump up in your prednisone to avoid a flare. My pharmacist also recommended getting the regular flu vaccine, not the senior because it contains an adjuvant designed to rev up the immune system. Although equally effective, the Pfizer Covid vaccine was also easier on the immune system than the Moderna. Ignore the public health message to get both at the same time. With these precautions, I never had a problem with either vaccine. Good luck. Taper very slowly. Don’t get discouraged if you hit a plateau when you are down to a low dose. Take a step back and then go down again. It’s only temporary. Hope this helps.

@tm0110 my Rehumy suggested Tylenol for Arthritis as a supplement follow bottle. It helped

@tweetypie13 Thank you for all your suggestions and the reminder I’m not alone here. So appreciate this group.