Connect
← Return to Prednisone tapering is challenging. What does remission feel like?
Discussion
Prednisone tapering is challenging. What does remission feel like?
Polymyalgia Rheumatica (PMR) | Last Active: Sep 3, 2023 | Replies (209)Comment receiving replies
I have only recently been diagnosed after 5 years of trying to figure out what was wrong with me. The rheumatologist started me on 10mg prednisone which helped almost immediately and I had energy and hope for the future. However after about 6 weeks the effect of prednisone seems to be diminishing. My shoulders are very sore now most of the day. I find it hard to lift things and my energy is getting sapped again by dealing with the pain. I reported all this to my rheumatologist yesterday but haven’t heard back. I was scheduled to start cutting back to 7.5 the first week. I am really scared about that. I feel like I will be back at the beginning where I have no energy and even ordinary things seem impossible.
Replies to "I have only recently been diagnosed after 5 years of trying to figure out what was..."
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
Connect
Hi @mzamyl I am sorry to hear about your pain. I can't imagine living with the pain of PMR for five years. It must have been terrible. I had PMR undiagnosed for about 10 months - then my symptoms changed. Pain throughout my entire body left, but I had the worst stiff neck I ever experienced that no amount of stretching could make go away, pains in the back of my head, short stabbing pains on the side of my face, scalp tenderness, torso itchiness, a dry non-productive cough, and some problems seeing out of my right eye a couple of times. The malaise and loss of appetite from PMR stayed with me, and I also had anemia. I got a mild case of shingles, even after having the Shingrex vaccine, which led to a diagnosis of Giant Cell Arteritis (GCA) , confirned by a biopsy of the temporal artery. It is the companion disorder of PMR and requires a higher dosage of prednisone. I started with 40 mg of prednisone daily in mid-May, tapering down by 5 mg every two weeks. I am now down to 7.5 mg with virtually no symptoms. Your doctor probably told you to be on the lookout for pains in your head and upper body and difficulty chewing and swallowing. A close friend who's a doctor told me, if I had any problems with my vision to get to an emergency room immediately. Untreated, GCA can cause stroke and/or blindness so it's nothing to mess with. My guess is that your physician may increase your prednisone. I've read here that some people start treatment for PMR with a dosage of 20 mg prednisone. Anyway, stay vigilant, and I wish you the best.