Hi Everyone, I have not posted on here for several months. The last time was when my husband had a heart attack while we were on holiday, I am pleased to say he made a good recovery. At that time I was tapering the Pred from 40mg prescribed at the outset in April/May 2017 for a diagnosis of PMR and suspected GCA. After the problems and stress of my OH being ill, I had to go up from 11/12mg to 15mg. I started the taper again and managed to get down to 12mg just before christmas but then I became quite ill with a serious chest infection and had the Pred increased by GP to 30mg for 5 days only when I went back to 12mg. I was also given a very strong antibiotic and an inhaler. At the beginning of February, I reduced to 11mg which seemed okay for the first 10 days but then the pain in my thighs, legs and upper arms kicked in. Also fatigue on some days. I have gone up to 12.5mg two days ago and the pain is much improved. I can't seem to get down below 12mg. I was wondering if I am in too much of a hurry but it has been getting on for two years since diagnosis. Your comments would be appreciated.
Regards, Pat
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PatB1948
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I've had PMR for 14 years, I have been on pred for 9 1/2 years, it took me over 4 years to get reliably below 10mg and I have recently had to return to 15mg. For some of us it isn't an easy or straightforward journey and we hover at a higher dose for much longer. I have been down to 5mg, even 4mg briefly - but the disease activity ramps up every so often and both stress and other illness have a really major effect for some of us.
If you are repeatedly getting stuck about the same place it is your body and the PMR telling you something! Add to that the fact that while some people absorb 90% of their oral pred dose, others of us only absorb about 50%. If you are a 50% person then you will appear to need a lot more pred to be happy than someone who is a 90% person. And it is winter - some rheumies actually recommend not to reduce during the winter!
So pleased to hear your husband made good a recovery. Stress doesn’t help with this illness.
Sounds like you need to stay longer on 12mg until all symptoms have subsided before considering another taper. You’ve been very ill and it’s not unusual to take months to recover. Some can get lower before they stumble but we are all different. PMRpro gives a good explanation.
You’re only two years in and that’s early days for some of us. I have GCA and PMR - in my 5th year next month and still on 4mg. Have been down to 3mg over 2 years ago then had a flare and can’t get back to it. Will stay on current dose for as long as it takes. You are expecting a tad too much too soon. Relax and get better fully.
You may be in too much of a hurry Pat. You’ve been through so much in a relatively short period of time. It is nice to see you back on here. I am so glad your OH made a good recovery. I think you need to give yourself several weeks for your symptoms to settle and then try a very slow taper of 0.5 using one of the really dead slow methods. Stick with us, it’s your time to get well now. 2 years is actually a third of the time most people have GCA/PMR, so you are doing fine!
Hi there, I so like the two comments of the two people above responding to PatB. If I was her I would feel very reassured and supported. Great job ladies, and Pat B I am so sorry the PMR drags on for you. Kind regards, Alida.
Pat, I wouldn't worry about your progress. I'm almost 5 years into this journey and have yet to get below 10 mg successfully. As of two days ago I'm back at 15 mg due to a flare. It's hard to accept, but that's PMR for you.
Thank you, nuigini, and also all of you good people who replied to my post and gave me such good advice and good wishes. I am feeling much better today, so I'll stick with the 12.5mg of Pred for a while. We are going down south to Hampshire to see our son an family the last week in March so I'll wait till I come back and try reducing by .5mg and see how it goes.
I am sorry you are having difficulty with tapering but I think it is the norm for most of us. I was diagnosed with GCA in 2015 and really struggled with tapering. I was urged by my doc to taper very quickly and it did not have good results for me.. I ended up on more prednisone for way longer than if I had taken it more slowly from the beginning. I found a different doc who was much more supportive and also saw an endocrinologist who really supported a slow taper. It took me almost four years for my disease to burn out or go into remission. I think the tapering was the most difficult because I felt worse tapering as my body really reacted to the withdrawal of the prednisone. I did the dead slow method right around 12 mg and it took a really long time to taper to 0. I have been off prednisone since January 1. I used the crp blood test to help guide me and when there was a stressful time or illness I just stopped the taper and stayed on the same dose sometimes for a couple of months. I am also still watching my crp and how I feel. So I guess I would encourage you the most by saying it takes what it takes. The slower you go the more likely you will get off the pred. Most people are able too get off the prednisone at some point but their are some people who don't and the disease can always rear its ugly head again. Although it is hard try to relax with your taper and let your body and your crp levels dictate the progression of your taper. My adrenals responded well to the taper and they are working normally. Hang in there!!!!
Ive tapered several (4) times and triggered flares...so am now content to sit with each new dose for weeks, even months... before tip-toeing to next .5 drop.
PMR is a capricious girlfriend, and does not tolerate us trying to be aggressive in our taper schedules.
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