So I was diagnosed with PMR 4.5 years ago. Up and down the steroids a bit having started on 15 mgs Pred. At the start of this year I was on 10mg again! Found it very hard to taper. Put on methotrexate in Feb and still not able to reduce so end ofay I in agreement with the rheumatologist I stopped the methotrexate and carried on with the DSNS 7 week tapering plan. It was working really well for me and I was taking my time in-between drops of doses. I world have said that the PMR had gone very quiet and I was happy with the taper. Yesterday and today I'm quite bad. Aches all over. My legs and behind my arthritic knees are quite bad. Am having to slow down and cancel exetcose classes ( not strenuous) and meeting up with people. I. am poorly.I have OA in my two knees ( Bakers Cyst behind left knee), left hand (recently infected corticosteroid) right thumb and right foot. Wondering if it's a flare now that the weather has gone cold and if the adrenal glands are not working yet. I'm currently on week 5 of the 7 week tapering plan ( 5 days new dose and 2 days new dose).After all of that do those knowledgeable and experienced people think I should up dosage by 5mg for 5/7 days and go back to 8mg where I was quite comfortable? The aches are so debilitating today. Will improve as the day goes on but will still have quite stiff knees. Sorry for this long post and I hope I phrased it properly.
Thanks for taking time to read it. I can see you are busy. All the best 🙏
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lkcreedon
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As you are nearing the end of this current taper would say it's probably a flare - so yes treat it as such... 7 days at least at increased dose.. but you can stay there for 14 days without impacting drop back down.. to 8mg.
You are also correct in thinking adrenals as well.. so maybe stick at 8mg for a month or so to give them a change to catch up... and if not already doing would suggest only 0.5mg reduction at a time.. and any tapering plan can be increased in time by repeating each stage/week ..
Really no rush, you have other health issues as well which make tapering more difficult, and some enlightened rheumies suggest no tapering during coldest part of year.
Thanks Dorset Lady for your advice. I will do just that now this morning. Bit down with it all. You think it's going well then it's not 😔. I will increase by 5mg and take it very slowly. You are great 🤗
Since Sunday, I have been a state. Cannot lift my arms - not to fold my duvet, towel my hair, or take a cup out of a cupboard. Aching neck, shoulders, hands and feet. I could not lift my head up from the book I was reading. The exhaustion is mind numbing. For some reason I cannot seem to go below 4 mg. GP suggested going back to 5 mg, which I did yesterday and I am much better today. I too thought it was the cold rainy weather.
The reason is because the pred cured nothing, it is a management strategy which combats the inflammation created by an underlying autoimmune disorder which causes the symptoms and which continues in the background, totally unaffected by the pred. The high starting dose clears out accumulated inflammation and then you taper the dose to find the lowest effective dose, the lowest dose that works as well to manage the symptoms as the starting dose did, the dose that is enough to combat each day's new batch of inflammatory substances which are shed in the body each morning at about 4-4.30am. If the dose you take is too low to do that completely, then inflammation builds up again and you get symptoms.
When your body repeatedly protests at about the same dose it is telling you that you have reached your destination - the lowest effective dose is the last dose that worked well.
Just to say I agree with everything DL has said. I'm all stiff and fed up this morning - as the latest lot of rain has arrived in the Alps, the other end of a big swathe of a rain front stretching from west of Ireland to here!!! It has been uncanny how your weather and ours has duplicated this year, it doesn't usually. I find I'm worse in the couple of days before the rain arrives. Whatever some doctors think - weather does make a big difference.
No apologies needed - that isn't a very long post!
Tnx PMRpro. Yes very uncanny really. My friend is just back from some region down the west coast of Italy and they had a few days of poor weather. Well my Rhumie dies make a difference as well. Mind yourself 🤗
A few DAYS of poor weather - I'd take that!! This year we have had one or two days of nice -ish weather at a time - then 4 or 5 of rain and no sun. We just don't DO no sun ...
We probably had the worst summer ever. So dull and lots of rain too. We had one beautiful week /10 days early in Sept. It made such a difference. Good for the body and mental health too!
No that sounds just about right. Holidaying up the West Coast in Connemara and always a cold breeze. Normally I like to go into the sea but it was just too cold for me this year. Wind chill. Guess we just have to put up with it. There is no choice 🥴
Oh you poor thing! Great advice as usual from Dorset Lady and PMRpro. I am also wondering whether my niggles are a flare or sleeping adrenal glands. I had a blood test yesterday and waiting for results to see if CRP is up again. If not, I will blame it on the adrenals and try to creep down further. My husband suggested watching horror movies to get the adrenaline going.
I've always wondered if stimulating a fight or flight response in us when the adrenals CAN'T respond actually damages us, maybe brings on a flare? I'd imagine our bodies/brains receive the impetus to panic but then the body can't respond and pump out cortisol and adrenaline. I wonder if this has ever been researched? Is it the same as brings on an adrenal crisis like a trauma? I'm just guessing, I have no medical background
That's what I thought, but it's yet another thing the doctors don't tell us, Another thing to worry about 😀 All the more important for us to keep calm and avoid stress
That might cause more problems than not - it isn't a lack of adrenaline, it is a lack of cortisol to help the body cope with the excitement, good, bad, emotional or physical!!!!!!
Thanks ChrisBeeLoop, waiting to have blood tests too. I'll keep that in mind about the CRP results being low and the adrenals not yet functioning properly. Not sure I will start watching horror movies however 🤓🤓
don’t despair Ikcreedon. Your story is similar to mine: diagnosed (over the phone) 4.5 years ago and tried tapering down 2/3 times.
However, this time I’ve now been on 2.5 mg for at least 2 months & now it’s colder I don’t feel inclined to drop just yet. Especially as I’ve so much on atm plus we’re preparing for our trip to Singapore & Australia in December.
I would add that the cold/damp definitely has an impact on us. I know that for certain as my husband suffers with pain from a chronic degenerative spine condition and the cold & damp makes SUCH a difference to him! But hey, we have glorious sunshine today & it’s much warmer here on the north east coast of Lincolnshire.
Tomorrow is a new day but I’m sending you a virtual hug for better days.
No, we live in a semi rural suburb of Grimsby now, the neighbouring town to cleethorpes.
We bought our very first house in married life in cleethorpes in 1972. A mid terrace & we wondered at the time how we could afford to buy it at £2,950!
Thanks so much Doraflora. Always damp in Ireland and cold as well. We do get an occasional sunny and warm day 😏 too. Since I upped my pred by 5mg yesterday, I've improved TG . Love to be down at 2mg. It's such a struggle and I would consider myself grateful not to be as poorly as many people on this site. Just gotta keep ploughing away ☺️. That upcoming trip sounds just great. Enjoy that 🤗
You might not, 5 might be the optimum dose, either for now or for longer. All you can do is try, go very very slowly and watch out for any problems eg a flare up, return of symptoms or adrenal problems.
True Tangocharlie slow and easy is right. As you say all I can do is try. From what I have read on this site I think I have learned quite a lot and what to watch out for. To be honest it's all quite interesting but I'd like it to go away now 😀
this may not help you but I have these sermingly random flares. I am not on pred. I take HCQ. My flares are less frequent but I still get them. Last two weeks I flared after my diverticulitis acted up. I ran a low grade fever. I adjusted my diet and waited it out. The diverticulitis resolved, but the flare followed, clavicle, back, hip. I am truely wondering if a bacterial infection has something to do with flares. You said you had an infection. If anyone has info on this, please share.
Anything that interferes with the immune system status can trigger a flare - so that includes infections of any sort. Some people don't notice it, some find that if the immune system is taking care of other business, their PMR/GCA symptoms improve dramatically. Everyone is different!
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