Prednisone tapering is challenging. What does remission feel like?

I was diagnosed with PMR 3 years ago and am still trying to taper off prednisone after experiencing several flares - at least 2 per year. With each flare I have had to increase my dose of prednisone and begin tapering again. It appears I have had no PMR symptoms for the past several months so the journey of tapering off prednisone continues. In January I was down to 15 mg. In recent months I have been tapering down 1 mg per month. I am now at 8 mg and have been experiencing terrible body aches to the point where I can't sleep, fatigue, muscle weakness and nausea + +. This has gone on for weeks now. My doctor is hesitant to increase my dose or suggest any pain relief other than extra strength Tylenol which does not touch the relentless pain I have been in. I am unable to work or even maintain my home. Is this normal? I understood the side effects from tapering would be up to 2 weeks and have been told to push through them but mine seem to continue and I am beyond being able to cope. Is there anything that can be done for someone in my situation?

I'm so sorry to hear this. This is why I went into the ER to find out if it had morphed into GCA. After I upped the Prednisone back to 15 mg. the jaw pain disappeared. It was quite excruciating; felt like the pressure on my ears was going to explode them (this I've experienced often along the way), but I have never experienced the jaw pain before. Scary actually when you know what it could be. However, because my CRP levels (3) were way below normal, the Neurologist said not GCA. I do have an appointment with the Rhematology Clinic on May 30 (finally) and will get them to check it out thoroughly. I appreciate your comments.

I feel ya. I am trying to taper down from 15 mg. Right now I am at 15 mg. after increasing 1.25. Will be tapering by 1 mg. starting on May 26th, so every 2 weeks Neurologist wants me to try going down by 1 mg. I have experienced many different things since tapering from 20 mg. Seems like everything returns, but not at the same time. Last week my jaws started up, so I went to ER as pain was up into my temples. Blood was taken and my CRP was only 3. I do not know if it is a result of the Prednisone, the tapering or the actual PMR. Everyone is different, but we're altogether in this boat. Also, tapering is an individual thing. As I've been advised on here, let your body do the talking. I feel that every 2 weeks is not enough to determine whether your body has accepted a lower dose, but Rheumatologist does not seem to get it. Until you've experienced the pain ups and downs of this infliction, they just don't get it. Best of luck with the roller coaster ride. Cheers ~ Deb

I was diagnosed with PMR in early 2020 and ceased Prednisone entirely at the end of January 2021. My advice is be patient and stick with the taper exactly as recommended. Many people here have had PMR much longer than us and it’s a very tricky condition so we can’t afford to get complacent.
I have realised that PMR changes your body and in my case I had cognitive issues but with exercise a good diet and supplements if you need them you can get yourself back in time - but it’s a new normal. Reduce stress wherever you can. Good luck!

Hi @mild835, jaw pain and pain in the temples can be symptoms of Giant Cell Arteritis which about 30% of those with PMR develop. A higher dosage of Prednisone (usually 40 - 50 mg) is needed to control GCA. If your jaw and temple pain continue, you may need a temporal artery biopsy to rule out GCA. Other symptoms can include a tender scalp, difficulty seeing, and a dry cough. I also had an incredibly stiff neck. It's best to be vigilant, as untreated, GCA can result in blindness and stroke. Wishing you the best, Teri

It's good you have an upcoming appointment with a Rheumatologist. I believe the most accurate way of diagnosing GCA is with a temporal biopsy. My CRP levels were also normal when the biopsy confirmed I had GCA.

I was diagnosed with PMR in April and began taking 20MG of Prednisone daily (in morning) for one month, then instructed to reduce by 2.5mg each week. I am trying to reduce my daily dose, yet unable to get below 15mg without discomfort in the back of my legs, buttocks e.g. sitting is uncomfortable. Prednisone makes me anxious and jittery and somewhat difficultly with sleeping. My doctor has suggested splitting my dose to twice daily i.e. morning 7.5mg and late afternoon 7.5mg for one week, then each week reduce by 2.5mg daily. I am hesitant to proceed as I feel taking prednisone late in the day will affect my ability to sleep as well as I have concerns with managing potential stomach issues using prednisone and the need to take food with dosage (difficult to do when other commitments during the day prohibit interruptions). I also take Pantoprazole in morning to help with stomach issues. I would like to get my dosage lower and more manageable, but wondering if others have had good or bad experiences with splitting daily doses; as well as p.o.v. on best way accomplish a reduction plan that works. Thank you!

Hi Mike,
Tapering off prednisone is challenging. You are certainly not alone. In fact, I moved your post to this existing discussion:
- Prednisone tapering is challenging. What does remission feel like? https://connect.mayoclinic.org/discussion/prednisone-tapering-and-remission/

I did this so you can connect with others, like @milld835 @tsc @anniekirby @minijohn @kmeikle1 and more, and read their experiences, including experiences with splitting dose over the course of the day.

You may also be interested in these related discussions:
- Prednisone tapering is hard: Do complementary therapies help?: https://connect.mayoclinic.org/discussion/prednisone-tapering/
- Tapering off of Prednisone: https://connect.mayoclinic.org/discussion/prednisone/

You're asking a good question about taking a split dose late in the day and your concern about it affecting your sleep. How early in the morning do you take your medication?