Prednisone tapering is challenging. What does remission feel like?

Hello @oldhen, I didn't understand PMR myself when I was first diagnosed. I had a really good rheumatologist that explained to me that it was like having arthritis all over your body. Prednisone is the gold standard for treatment.
Here's a good article that may help you learn a little more about the condition.

Understanding and managing polymyalgia rheumatica: https://medicinetoday.com.au/sites/default/files/cpd/MT2014-09-47-OWEN.pdf

What has helped me keep PMR under control is changing my lifestyle a little, exercising more and eating a healthier diet containing fewer inflammatory foods. Did your doctor or rheumatologist give you any suggestions or information to help you understand PMR?

Not really, just that it's an inflammatory disease and keep on with the prednisone. Thank you for the link, John. I continue to read as much about it as I can, and I was told by someone in the medical field that it's a "relatively new" disease, and there isn't an abundance of detailed information. but I haven't actually seen that statement in print. Is that true?
Thank you for your message to me.

Hi there. I'm sorry you are struggling. The typical starting dose is 15-20 mgs. I started with 15 mgs. and two years later I'm still on 9.5. You should only taper if you are feeling reasonably well. And then never more than 10%. Slow and easy does it. According to the Mayo study the average length of PMR is 5.9 years. Some people are in remission in two years. The disease dictates the tapering schedule. Doctors can recommend a tapering schedule though I've found the best advice from PMR forums. Hopefully you'll find the dose where you feel good. If you reduce too fast, the inflammation will get ahead of you and you'll experience too much pain. You can't force a reduction. You have to listen to your body. You need a rheumatologist who will work with you and give you the flexibility you need to find your best path. Best to you. Kathy

Hi @oldhen, Actually there is a lot of information out there on Polymyalgia Rheumatica (PMR). It is good to learn as much as you can about your condition so that you can make better decisions and ask better questions when discussion options with your doctor or rheumatologist. Here are a few sites that may help you learn some more if you like to read.

-- Diet and Lifestyle Changes That Can Aid in the Treatment of Polymyalgia Rheumatica: https://arthritissj.com/diet-and-lifestyle-changes-that-can-aid-in-the-treatment-of-polymyalgia-rheumatica/
-- National Organization for Rare Disorders - Polymyalgia Rheumatica: https://rarediseases.org/rare-diseases/polymyalgia-rheumatica/
-- American College of Rheumatology - Polymalgia Rheumatica: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Polymyalgia-Rheumatica

One of the suggestions my rheumatolgist gave to me that was really helpful when I was trying to taper off of prednisone was for me to keep a daily pain log along with how much prednisone I took that day. This helped me determine if I should go to a lower dose on my schedule based on how my body was feeling.

Did your doctor provide any suggestions or set you up with a schedule to help you taper off of prednisone when it's under control?

My rheumatologist answered yesterday and put me back up to 15 mg. I have to go have a blood test today to see what the actual numbers are. I feel that is fair. So much about PMR is perception and constantly assessing your body. Sometimes I feel like a poorly assembled Marionette. My shoulders especially are bothering me now. I have a very morbid imagination and my mind often goes to worst case scenario. I dread being unable to to change clothes by myself because of shoulder and muscle pain.

My rheumatologist answered yesterday and put me back up to 15 mg. I have to go have a blood test today to see what the actual numbers are. I feel that is fair. So much about PMR is perception and constantly assessing your body. Sometimes I feel like a poorly assembled Marionette. My shoulders especially are bothering me now. I have a very morbid imagination and my mind often goes to worst case scenario. I dread being unable to to change clothes by myself because of shoulder and muscle pain.

I have read many opinions on tapering and there is a separate thread about it. There is a method that is called the English method that someone describes in detail. Basically, you keep alternating old dose and new dose until you are on new dose. This is my 3rd bout of PMR, so I have tried lots of methods. I have found that the lower the dose, the harder it gets to lower it. I used to work with endocrinologists and they told me that at the low doses, your body has been treating the prednisone as a replacement and it takes awhile for the adrenal glands to kick in production again. Currently, I will be on prednisone 2 years next month, have been reducing from 4 to 3 mg for the past 3 weeks. I am now taking 3 mg for 2 days, then 4 for one day. I always either split my dose of prednisone or take it all about 6 PM with my supper. I do get stiffness in the evening, but I am a morning person and feel good in the AM with the prednisone in the evening. My rheumatologist is good with all this and my inflammatory markers are staying down. I feel I will get to 3 in a week or two and then stay there for at least a month before trying to decrease again. Patience and a physician who listens is the key. The first time I had PMR, I was on prednisone 2 years, followed by remission of 12 years, the second time I was off in 10 months, but the PMR recurred big time 8 months later, but in retrospect, I think it was not really gone as I had all sorts of strange symptoms which I attributed to other things. This time I am taking my rime

Re: taking your prednisone in the evening, do you have trouble sleeping? My rheumatologist suggested I take it as early as possible in the day because I have had trouble sleeping.

For the past week I’m tapering at 4MG every other day but have pain in my shoulders at night. I’m wondering if I should try shifting my dose to the afternoon or evening. Anyone have thoughts on this?

I have the opposite problem. If the prednisone is “wearing off”, I get stiff in the shoulders and some pain so have trouble sleeping. Right now I am on 3 mg and take with my supper around 5:30 -6:00. When I was on the bigger doses, I split the dose, taking some in the morning and some at night. It is interesting to me that if I forgot to take even the small dose, I wake up about 2:30 AM with pain and stiffness and it takes me a minute to figure out the problem. I am a “morning person” and with this regime, I wake up feeling really good.

Re: taking your prednisone in the evening, do you have trouble sleeping? My rheumatologist suggested I take it as early as possible in the day because I have had trouble sleeping.

For the past week I’m tapering at 4MG every other day but have pain in my shoulders at night. I’m wondering if I should try shifting my dose to the afternoon or evening. Anyone have thoughts on this?