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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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I don't think you are crazy. The same questions would be going through my head if it were me. I don't have any experience with dexamethasone so would see if 20 mg prednisone would take away all my pain especially if it helped before? If not I might talk with the doc and try more dex.
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4 ReactionsThank you John. But I think I am crazy...lol. ok I actually think that makes sense.....take care. Be well
Hello there, I was diagnosed with PMR and giant cell arteritis last fall after my biopsy. I started out with 60 mg of prednisone for two weeks then the next two weeks down to 50 until currently after a year I am down to 1 mg of prednisone. I was supposed to be off it by now as of August but started to have a little relapse symptoms of PMR come back. Also some pressure tension in my scalp. I go to see my rheumatologist on Wednesday and hopefully don’t have to take any more upgrades of medicine. Would love to hear how your journey follows through! Good luck ! Tracy
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2 ReactionsHello there, all of my PMR and giant cell arteritis symptoms came after my second vaccine of the Moderno shot. That was April 2021. I am currently tapering on prednisone but feel a little bit of relapse coming back but trying to stay positive though!
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2 ReactionsGood advise as always John. I’ve been on this site for 2.5 years. I have had to increase my pred after tapering a few times. It’s been a roller coaster as many of you know. I’m now at 5 mg, I only go down 1/2 a mg a month right now. Having significant lower back pain and associated nerve pain down both legs, managed by? Heat/ volteran topical. Stretching exercise is only partially helpful. Still walking in late afternoon but it’s slow and no more than 2 mi. I’m feeling defeated and frankly down. I have underlying spine issues( stenosis lumbar and cervical) and an think it that some of this pain is now being unmasked by the lowering of the Pred. Since my leg and foot go numb intermittently when I walk/ stand. Have an ortho/ spine referral. In progress at UCSF. Ideas suggestions?
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2 ReactionsI think it's good that you can walk 2 miles no matter how slow it is. I probably can't walk more that 2 or 3 blocks without resting some. It's mostly because it's hard for me to walk normal with good posture. I lean forward quite a bit which I think is similar to camptocormia or bent spine syndrome. I don't have any real pain but do have some ache and pressure in the lower back. I'm the guy that loves to push the shopping cart at the grocery store because it helps me walk 🙂 I did purchase some inexpensive Nordic trek poles that help me walk more erect if I want to walk around the neighborhood. I've heard some members have had good luck with Myofascial Release Therapy (MFR) and there is a discussion on the topic you might want to take a look at -- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Have you heard of Myofascial Release Therapy?
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1 ReactionHi @karinaph, I have degenerative disc disease and hardware in my lower spinal due to a spinal fusion. That pain is unresolved but since I also now have PMR I have learned that using a walker at times can be very helpful. I am only 63 years old and was a little reluctant about having to use a walker at my age but I can’t believe the difference in my pain level when I use it. Please consider getting something that will make walking easier and that may be part of your rehab too. I am really impressed with your 2 mile walks—good for you, that is inspiring. Biggest blessings!
Sandi
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2 ReactionsThanks Sandi. I do have walking poles and use then sometimes. We’re all in some sort of discomfort it seems. Sorry that your back pain is not resolved. When did you get diagnosed with PMR? Similar situation as mi e in that. K pain from orthopedic issues plus the back/ hip pain from PMR. It’s been : years total, though only treated for 2.5 hrs. It took awhile to figure out what I had. AgIn, not unusual journey for fellow PMR’ers. I hope your PMR is under control. Thanks again for your suggestions.
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2 ReactionsHiJohn. I guess I should be grateful, but it’s difficult when I’ve been so active my entire life. I haven’t done myofascial release but have done a similar treatment which also focuses on the fascia. Active release, therapy ART. Maybe I’ll try again.I shy never covered it . Walking pole might be in my walks again. Thanks for your recommendations John.be well
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1 ReactionI was diagnosed in May 22 but didn’t start treatment until June. I really wanted my Orthopedic doctor to weigh in on the diagnosis from my rheumatologist. When the 2 were in complete agreement, I was forced to accept the new reality. I am tapering—down to 15 mg but all of this PMR hip pain is new. I am doing fairly well but definitely notice new pain in the AM and at each taper. It does resolve after I take the prednisone but does make me wonder what life after prednisone looks like. I think we are all learning from each other. Good luck!
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