Prednisone tapering is challenging. What does remission feel like?

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I have just tapered to 8 mg of prednisone from 9 after a month 3 days later I am in a lot of ache and pain, scale of 1 to 10, I am 7 This morning took 9.5 mg as per tapering suggestions. I guess this is a relapse correct? Just read in medical digest that taper should be done once patient is asymptomatic at current dosage before reducing. I have always had morning stiffness and aches and pain around 2 to 3 level during tapering from 40 mg I take my prednisone at 5 am and am asymptomatic by about 11 am. Should I be asymptomatic earlier I will talk with my doctor in a few days. There are so many opinions about tapering as everyone is different. My doctor said the same thing. What thoughts and experiences are you folks having about this? Are all of you experiencing what I am. Is being sore every morning Ok . This condition is frustrating.

I have read many opinions on tapering and there is a separate thread about it. There is a method that is called the English method that someone describes in detail. Basically, you keep alternating old dose and new dose until you are on new dose. This is my 3rd bout of PMR, so I have tried lots of methods. I have found that the lower the dose, the harder it gets to lower it. I used to work with endocrinologists and they told me that at the low doses, your body has been treating the prednisone as a replacement and it takes awhile for the adrenal glands to kick in production again. Currently, I will be on prednisone 2 years next month, have been reducing from 4 to 3 mg for the past 3 weeks. I am now taking 3 mg for 2 days, then 4 for one day. I always either split my dose of prednisone or take it all about 6 PM with my supper. I do get stiffness in the evening, but I am a morning person and feel good in the AM with the prednisone in the evening. My rheumatologist is good with all this and my inflammatory markers are staying down. I feel I will get to 3 in a week or two and then stay there for at least a month before trying to decrease again. Patience and a physician who listens is the key. The first time I had PMR, I was on prednisone 2 years, followed by remission of 12 years, the second time I was off in 10 months, but the PMR recurred big time 8 months later, but in retrospect, I think it was not really gone as I had all sorts of strange symptoms which I attributed to other things. This time I am taking my rime

@skiing - You are right, this is a frustrating condition and each of us are a little different when it comes to PMR. I struggled more with the tapering during my first occurence of PMR and it took me 3-1/2 years to taper off. We were similar except I started at 20 mg and did not taper if my pain level was more than 1 to 2 in the morning when I first got up which is usually 5am. I normally take my meds at 6 am after I've finished my morning shower routine. I would feel better a couple of hours after taking the prednisone. I did better the second time around with PMR because I changed my eating habit some and tried to avoid the foods that are inflammatory and make PMR worse.

Hi @virginiaj, Sounds like you have a great plan for tapering prednisone. My first bout with PMR tapering was 3-1/2 years. The last six months going back and forth between 1 mg and 1/2 mg dose. It does get harder to taper at the lower dosages.

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.

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.

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

I do not understand prednisone for PMR. Aren't there other anti inflammatory drugs that are less harsh? I did not like the "manic" feeling I experienced while taking 20 to 10 mg/daily. I'm only on 3mg daily and that seems to make that feeling go away. Dx about 16 months ago. Never have had a medical condition in my life that I didn't understand. Except this one.

Hello @oldhen, I didn't understand PMR myself when I was first diagnosed. I had a really good rheumatologist that explained to me that it was like having arthritis all over your body. Prednisone is the gold standard for treatment.
Here's a good article that may help you learn a little more about the condition.

Understanding and managing polymyalgia rheumatica: https://medicinetoday.com.au/sites/default/files/cpd/MT2014-09-47-OWEN.pdf

What has helped me keep PMR under control is changing my lifestyle a little, exercising more and eating a healthier diet containing fewer inflammatory foods. Did your doctor or rheumatologist give you any suggestions or information to help you understand PMR?