PMR Dosages and Managing Symptoms

When I was diagnosed with PMR in March 2021 my rheumatologist told me to take 15 mg of prednisone in the morning when I got up. After three or four days trying that I wasn’t feeling any better. And my wife suggested that I take it before I go to bed instead. I researched her idea and found a study by an Italian professor who looked into when inflammation peaks and determined that a it’s about 3 AM in the morning. His conclusion from his study was that you should take prednisone in the evening or before bed so that its peak benefit takes place about when the inflammation in your body peaks. Once I switched to taking it in the evening, bingo my pain and stiffness were substantially better the next morning. I hope that works for you. Good luck and feel better.

I agree with taking it at bedtime except I have always been a poor sleeper. It should be a help if sleeping was not an issue.

Hi @elizabethjoan and welcome to Mayo Clinic Connect.
I moved your post to this discussion:
PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/
So that you can connect with others dealing with your same issue.

Here is one other you might like to read:
Prednisone tapering is hard: Do complementary therapies help?: https://connect.mayoclinic.org/discussion/prednisone-tapering/

Did you ask your physician if it was ok to supplement with OTC's?

Hi, I am specially interested to read the very wide range of experiences of people tapering their Pred. dosage. I was given a pattern of monthly reductions by Rheumatologist, while my friend who developed PMR at almost the same time as I did, was given a very different pattern by her GP (neither based on test results) Three months in, a subordinate member of my hospital's Rheumatology team advised slowing my tapering down. Instead of 15, 12.5, 10, 9, 8,7 etc monthly, he recommended monthly reduction : 10, 10 and 9 on alternate days, 9, then 9 /8 alternate days and so on. This was based on no test results, no recurrence of pain, simply a preference on his part. Having already developed the full range of unsightly side effects, I was disappointed to have to prolong the process. I have had no in depth explanation of theories relating to this with Rheumatologist. I am interested in what I understand in your message to suggest that the adrenal system should be expected to start kicking back in around 7mg. Can anyone confirm this, either as medical knowledge or anecdotally. Thanks in advance for all your advice.

My rheumatologist told me I could supplement with Tylenol or Ibuprofen but not on a regular basis. I know from experience that Ibuprofen affects my stomach and esophagus. Since prednisone also can have this effect it's not a good idea to take very much for me. It needs to be taken with food, which is an inconvenience. I once had a very bad cold and took cold medicine with Tylenol in it for a week, maximum dose and my liver enzymes were elevated, which I suspect was caused by the Tylenol. I am having difficulty tapering below 8 mg prednisone. My rheumatologist suggests that I try using the OTC meds to help me get to a lower dose. If I wake up at night in pain I take Tylenol and can usually get back to sleep. I take my full dose of prednisone in the morning because of sleep problems since I have been on the prednisone. I also want to function well physically in the morning and am feeling pretty good 2 hours after I take it.

@macferse Here is an article that explains a bit more re. your adrenals. You should be able to find a lot on-line. I just read an article that suggests adrenal issues might not show up until you get lower than 7 mgs. (maybe 3-4), but there's a range and we're all different (which is why you won't find many difinitve answers).
https://healthunlocked.com/pmrgcauk/posts/private/146749826/reducing-steroids-activating-the-adrenal-glands

Thanks Kmeikle1 for your prompt and very helpful comments and suggestion.
Really grateful !

@maryft It is confusing so you need to do your own research and then of course listen to your body. According to Mayo the average duration of PMR is 5.9 years. Prednisone (or some form) is the only medication that is effective at treating PMR. So, many people are on prednisone for many years. I've been on it for three years. I don't want to be on it, but without it I'd be incapacitated with pain and lack of mobility. If your starting dose provided relief, you stay at that dose for awhile (I think usually 4-6 weeks) and then try to reduce your dosage very slowly. If the pain returns you've gone too low. The objective is to get as low as you can while controlling pain. Everyone is different. I started at 15 mgs. and three years later I'm still at 11 mgs. A few months ago I tried to rapidly decrease (to prepare for a surgery I have yet to have). I was so excited when I got to 7.5 mgs. I was okay for a few weeks and then it was like I was hit by a truck. So I followed the flare protocol and went up to 12.5 for 10 days and now I'm slowly trying to reduce. Unfortunately your body will dictate how low you can go. If you try to go too fast, the inflamation will accumulate and you'll have a flare. You don't want to yo-yo. Take it nice and easy.

kmeikle1,
I did wean off the prednisone, after being on it one year, and I will never go back on it. I was Osteopenic when I started on prednisone, a very active 77 year old, and am now full blown with Osteoporosis! I suffered a fractured rib and a fractured vertebrae, in two separate incidents this year, plus had almost every prednisone side effect listed. I also ended up having cataract surgery!! It's my understanding that prednisone is the only known medication that relieves PMR, but I had no clue what an impact it could, and did, have on my body. People react differently to meds, but I would strongly suggest anyone being on it have a bone density test!!! Currently, I'm listed as high risk for fractures and will need to do daily injections (in my stomach), for 2 years, to rebuild my bone. These injections will cost me +$500 a month, out-of-pocket, unless I can qualify for assistance from the pharmaceutical company. I've been advised by my endocrinologist that I seriously need to do this. My objective here is to make people aware of the importance of bone testing if they're on prednisone long term!! I t is critical!

@maryft Oh my! You've really paid a price in dealing with your PMR. I'm sorry to hear this. I was put on a generic fosomax after taking a bone density test early on. Do you still struggle with PMR? Thank you for sharing your experience. Hopefully many will read this and take preventive steps. Very important.