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Prednisone tapering is challenging. What does remission feel like?
Polymyalgia Rheumatica (PMR) | Last Active: Sep 3, 2023 | Replies (209)Comment receiving replies
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?
Replies to "I was diagnosed with PMR 3 years ago and am still trying to taper off prednisone..."
It seems to me that you are probably having a flare. Maybe your doctor thinks you should be over this disease by now but my reading suggests that the average length of the disease is 2 years, so some people deal with it longer. My rheumatologist told me that I could supplement the prednisone with Tylenol and/or ibuprofen if I was having a flare, but not to take either drug regularly. If prednisone in the morning does not take the pain away, I take 400 mg ibuprofen at lunch. If I wake up in pain at night I take 650 mg Tylenol. If both of those drugs are not enough, I call the doctor and ask if I can increase the Prednisone.
This was me Rheumatologist did not understand it but i have a friend who is a MD and he suggested I advocate for smaller reductions, I had to advocate strongly but now I have pediatric liquid prednisone. It worked for me i am now currently on 1.25 mgs per day reducing by 0.25 mg per week is slow but flares are not happening. When I was on higher doses reduced every month then every 2 weeks now down to weekly.
I know we are all different so may not be the solution for everyone just letting you know what works for me at the moment speak with your doctor of course.
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
What you are experiencing is not normal. It saddens me to read the replies and how this disease is being treated by doctors/rheumys. Big picture: according to Mayo Clinic, the average duration of PMR is 5.9 years and the only treatment is prednisone. We try to taper to find the lowest dose where we are mostly comfortable. We shouldn't reduce prednisone if we are experiencing pain. So for example, I found complete relief with my initial dose of 15 mgs. (some people need more). When I dropped to 12.5 I felt some pain, but not enough to increase. I've struggled trying to get below 10 mgs. for several years now and I still take 11-12 mgs. daily. Do I want to take less? Yes, but I don't get to determine my taper. My body does. If you take less prednisone than your body needs to deal with the inflammation, the inflammation continues to build and you'll have a flare. My hope is that you'll find a rheumatologist who will help you figure out what's best for your body and not follow the limited and sometimes errant medical literature.
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Hello @vas135, Welcome to Connect. We merged your post into an existing discussion on the same topic here - Prednisone tapering and remission: https://connect.mayoclinic.org/discussion/prednisone-tapering-and-remission/
You may also find reading through the following discussion helpful:
-- How did you cope with the side effects tapering off prednisone?: https://connect.mayoclinic.org/discussion/taper-side-effects/
-- Tapering off of Prednisone: https://connect.mayoclinic.org/discussion/prednisone/
My first occurrence of PMR took me 3 and half years before I could taper off of prednisone. What really helped me was my rheumatologist prescribing 2.5 mg and 1 mg prednisone tablets along as well as the 5 mg tablets. Then he asked me to keep a daily pain log along with how much prednisone I took for the day. It allowed me to listen to my body and taper slower, only tapering when my pain level was acceptable which for me was a 1 or 2 level.
Do you keep a daily pain and dosage log?