Hello all… I am just starting out and have a question. Diagnosed 2.5 weeks ago. Put on 20mgs by Dr (Rheumatologist) for 2 weeks. Blood markers all came back into a good range during that time. Felt really good as well. Dr told me to go to 17.5 mg for 2 weeks. Day 2 of that taper and I feel like I was hit by a truck yesterday and today! Unbelievably sore and achy as you all know what it’s like.
It’s the weekend now. Should I just bump myself back to 20 mg and advise on Monday?
Thanks for your time and hope you are having a good day
DesertLife10
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DesertLife10
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I was told to reduce from 20mg to 15mg after 3 weeks from diagnosis, I thought I was dying. Initially the steroids had worked like a miracle. I reckon you need four weeks initially, doctors want us to reduce like bats out of hell! Can you contact your rheumie and tell them? You may have problems for a couple of days with steroid reduction but that should improve pretty quickly. It does sound like you have reduced too quickly and should go back to 20mg to hit the PMR on the head. Reducing every two weeks does not really give the body time to get used to the new dose I reckon. Four works much better.
I really appreciate the quick and helpful response. Seems like we are all kind of finding our own way with the help of each other to tap into our collective experiences. It feels strange to not follow doctors orders with medication but the suffering is real. Did you or do you take all of your Pred in the mornings in one dose or spread it out throughout the day?
I take all my pred at 2am with some hard cheese. I have never split the dose although others find it helps. I think one problem is that steroids work so well a lot of doctors just think you give them and everything is tickety boo. They really don’t know much about the illness.
Best practice is four to six weeks at starting dose. Further to that, no taper should be more than 10% when on PMR dosage (GCA may allow a larger taper because initial dosage is so high, until down into the PMR range). Once you get that pain under control again, and have been as symptom-free as you can get for a month, then see if you can taper by 1 mg at a time. You may be able to taper more frequently, as your doctor apparently thinks you can now, with this smaller reduction, at least until you get into the zone between 15-20. After 10 mg a good idea to taper by only .5 mg a month.
Thank you. I guess we just don’t know what we don’t know until we go thru this process! In my case, all signs pointed to a reduction and I left that up to Dr. I agreed with her as I was feeling good after 2 weeks and bloodwork was very positive. I thought I was very lucky and was going to beat this PMR quicker than later. All signs were positive until…well they changed quickly. I truly believe the medical community would benefit from researching and collecting valuable data so we can hope our professionals all grow better at diagnosing and prescribing and reducing the appropriate levels of pharmaceuticals.
I was lucky with my doctor and my initial taper, but she never told me that pred wasn't a cure. I thought I'd be done and dusted in three months! Well, in my eighth year on pred (albeit usually at a very low dose) I now know that to have been pure uninformed fantasy. However, most people do go into remission well before eight years, and most of the rest of us who don't can manage on a very low dose. If I'd really "heard" something my doctor said at the beginning (she found a lot of her patients liked to keep a supply of 1 mg tablets on hand even after they'd tapered off in case they needed them) I would have understood better what was in store for me. If I'd been stuck at a high dose for a long time, that would have been another matter, but as I say that is a small minority, so don't lose heart! 🍀
As for "beating PMR" well, as you are finding out, it doesn't work that way! Nothing you do in the way of treatment will speed up remission. What we can do is endeavour to manage our lives in such a way as to avoid as much stress, both physical and psychological, as possible, and be kind to ourselves. I think we are lucky indeed to have an effective medication, even if we have to use it carefully. As we often say in this community "It isn't slow if it works." If nothing else, impatient people like me learn patience.
Would highly recommend you read through the FAQ on here. Pred only treats the symptoms not the underlying illness. That burns out on its own time. Unfortunately this is a long haul condition anywhere from 2-5 years with some who end up on Pred much longer. We’ve all learned the hard way that slower is better because that let’s us know if we’ve overshot the amount of Pred needed to control symptoms and can adjust with finer tuning.
I am sure 8 years of dealing with this has been with many challenges! It sounds like you did well to endure those. Very helpful that you shared your experience which is helping to develop a realistic mindset. Like you I don’t have really great patience and I will have to learn or I will add to the frustration with PMR
I have to say that, except a couple of years ago when I had a major flare (not directly because of too low a dose - it had been a satisfactory dose for several years - but because of increased disease activity) it hasn't really been a struggle at all. The worst part I think was convincing people that I wasn't the person I was before in terms of energy, etc. Still encounter this, but not so often. People who know me, now know better than to ask! Perhaps it was fortunate I retired quite early in the PMR journey, actually about six months before diagnosis, so work was not something I had to contend with except undiagnosed for several months, and probably contributed to my decision to retire, athough I was 67 anyway. Undiagnosed PMR did affect my life quite seriously. Treated PMR much less so.
I was put back up to 40 just over 3 weeks ago, due to suspected GCA, told stay there for one week, then drop to 30! stay there for 2 weeks, then down to 20 which just did 3 days ago. I was feeling very weird, kinda woozy, weak body, jelly legs, just strange, agitated anxious, and not much sleep, so I questioned my rheumy, and said I had read, and heard, only suppose to drop at 10 percent decrease each time, he said NO, at least until got to 20, which after 2 weeks, drop to 17.5, , so seems some rheumy,s have different ideas , but also, want to bring you down fast when on high dose like that
I think, provided the inflammation it's supposed to be treating is gone, it is generally a much faster taper through the GCA doses. I do question that 20 is where you slow down. I think 30 might be a bit kinder to the body which, even if inflammation is controlled, still has to adjust to a wildly changing dose of an important chemical!
Thank you DL. Seems like I always followed my teachers and medical professionals direction. You can see where some of us have the built in conflict with modifying their advice as we want to trust their training. However that being said, people that have actually experienced PMR have the real value to helping one’s self. If I don’t feel better in a couple of hours then I will bump up my Pred to previous levels and ask for forgiveness when I can communicate with my doctor. Thank you and have a good day/evening.
I have no issues with following others directions per se -but if things don’t work for whatever reason you need to tell them! In whatever way you feel comfortable - otherwise the same mistake gets made again.
Plus we are humans not machines and everybody’s PMR or GCA is slightly different to the next person’s.
Guidelines are fine, but they are only that -and it does say (in the not so small print) they may need to be adjusted to individuals requirements….
All been said - just because the markers look BETTER it doesn't mean all the accumulated inflammation is cleared out and that is crucial for longer term success. I think most people need at least a month at the starting dose but these days they are in such a hurry to reduce the pred they don't give you a chance.
I believe that is exactly the case but I really don’t understand that thinking in medical world. Prednisone seems like an amazing drug and really has helped me. I don’t believe anyone would choose to stay on it other than it really helps you recover over time from the sound of things. Thank you
It doesn't help you recover - it is a management strategy that allows a better quality of life until the underlying autoimmune disorder that causes it burns out and goes into remission. Bit like a plaster cast supports a broken bone while it heals.
But what you are doing at the start is a springclean to sort out the stored up inflammation and only then can you taper the dose down to deal with each day's new batch of inflammatory substances, sort of a daily dust.
I was diagnosed in August 2020 after 4 months of practically lying in bed all day. Had to have help going to the loo, dressing, turning over in bed, etc. I was put onto an initially dose of 15mg for 3 weeks, then reduced to 10mg for a further 4 weeks, then down to 7.5mg. I've remained on this dose since October 2020 and my rheumatologist wants me to continue until on this dose until October 2023. The tapering caused me no pain at all and after a few weeks I was back to normal activities and gentle stretching so I could rebuild my muscle tone. One thing PMR has taught me - we all respond to treatment differently and GPs and Rheumatologist should take this on board, but many of them don't. In your position I would share your experience with your rheumatologist and hope that he/she is sufficiently enlightened to give you the best advise. Wish you well......
Contact the Rheumie and slow down that taper. If only things happened that quickly. Maybe go back up to 20 mg? Doctors seem to think it's a race to get to "no Pred". It has been my experience even .5 mg at a time is more than enough.
two weeks for initial is just way too short and 20 mg may simply not be enough. Yes for sure go back onto 20 and perhaps up to 22 or 25 mg . Stay at first level for 4-6 weeks then start taper by 2 1/2 mg every 4 weeks
I can only reinforce what others have said. Tapering is not the same for us all. I’m 15 months into my journey starting at 20 mg prednisone a day and only managed to taper to 15 mg a day now having to go up to 25 to control tapering flare ups. For me tapering is akin to getting past a guard dog. My Internist likes to say I’m A typical about 30 times every visit but this site and others like it help me feel normal. I taper 0.5 mg at a time plus I’m now on methotrexate. Slow and steady is winning my race - I hope.
Thank you! Was methotrexate prescribed because of the flare ups or for other reasons? Do you have any negative side effects with this drug? Thanks again.
just a quick update: I did jump back to dosage I was on for initial 2 weeks (20 mg). It took about 10 hours to feel the relief we all need. I have communicated with Dr via messaging that I think I should stay at 20.
One lesson for me is that I won’t try tapering to a new number if prescribed by my Dr on a Friday. You are flying solo on the weekend and have to do what your body needs. I guess we all try to figure out what exactly that is especially if we are brand new at this. Thanks for everyone’s help. It is very much appreciated
I was told to reduce from 20mg to 15mg after 2 weeks and it was an absolute disaster! I wish in some ways I could go back and start again with the knowledge I gained from the wonderful volunteers who give up so much of their time on this forum. I don't think I would have ended up so poorly 🫤 If I were you, I would stay at 20mg for at least four to six weeks before reducing again. Good luck 🍀
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