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Prednisone tapering is challenging. What does remission feel like?
Hi all what’s remission feel like? Does it only happen when I’m completely off prednisone or can remission occur while I’m tapering?
I’ve had PMR for a year and three months and I’ve been on prednisone for a year. I have been able to taper down to 4mg per day with some manageable pain and moodiness, but 2 days ago my head cleared and I felt like my happy self again. I’m still a little achy but really thrilled that I’m not cranky/spacey/frustrated.
Can I accelerate the taper? Any advice?
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It was my primary Dr. that prescribed it that high. She said we want to knock it out with a high dose and than go down. She is very knowledgable on PMR so I trust her. My sed rate and cpr were both high. When I started the Prednisone it took the pain in my shoulders, neck and hip area away afew hours after I took it. I was really wondering if the fatigue and aches were due to the tapering of the Prednisone.
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2 ReactionsHi @traynor4, I had PMR, undiagnosed for a number of months with pain and stiffness throughout my body. I eventually experienced extreme fatigue. Despite the pain, I kept walking, but felt as if I would not make it home. I had anemia , which turned out to be a symptom of Giant Cell Arteritis. With the GCA, I had terrible neck pain, tender scalp, a couple episodes of not being able to see out of my right eye, and short stabbing pains that ran from my ear to my nose. With confirmation of the diagnosis by biopsy of the temporal artery, I started on 40 mg of prednisone, then tapered down by 5 mg every two weeks until I got to 10 mg, then tapered down by 2.5 mg every month. I'm currently at 3mg, with some minor pains in my head, but have good energy. I hope you find an answer to your question.
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1 ReactionI 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?
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2 ReactionsHello @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?
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1 ReactionIt 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.
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1 ReactionThis 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.
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3 ReactionsI 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
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1 ReactionIn my experience jaw pain and temporal headaches indicated my PMR had advanced to Giant Cell Arteritis.
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3 ReactionsThose are the symptoms my doctor was always reminding me to watch for when my PMR was active. They were always watching for GCA.
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.