Seasons greetings. If anyone has any thoughts on this. I am taking prednisolone for PMR for 4yrs. Have tried repeated gradual reductions .. to 1mg at one point. I am at 2,5mg at present and have decided on .5mg reduction every 3 weeks.
Again I have developed varying pain in small muscles in my upper arm- affecting sleep and awkward on the bike etc ( i maintain cycling every day even through the worst) At times the arm just momentarily sort of lets go in the movement-- the fine movements. In the early days the strength disapeared from my arms/shoulders like water. Do I consider PMR again? Knock up briefly to say 10mgs then quickly back?
I do wonder if all this has been exacerbated by an initial long period of undiagnosed PMR, a few months with very high inflammatory markers.. over 155 which impressed me if no one else. I paid privately for a rheumatologist who immediately noted-- classic PMR and prednisolone. Is there evidence that a 'settled in' period of PMR makes any difference to recovery? Or is this me again?
Any way, Happy New Year all.
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attempttocycycle
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Regards “settled in” PMR, 4 years isn’t at the point of breaking records. The median period is something like 4.9 years. This 2 years and you’re back to normal idea that floats about isn’t the norm for most in spite of what some doctors think.
Having read your past posts, what does stand out is that you have exercised “through the worst”. Granted you stopped the gym but during the cycling you have pushed your body when it is not comfortable which can be detrimental with muscles, tendons and ligaments dealing with Pred and PMR. I found when I became deconditioned from having curtail my high level of exercise and the Pred (started 60mg) ‘melting’ my muscles, plus tendonitis, it was the small muscles that were the worst. The large groups were much more robust but the stability ones suffered greatly in my neck, shoulders, arms and hips. I had to go back to small movement exercises from a good physio, starting depressingly small, but it turns out, very effective.
Therefore, you could be dealing with a confusing mix of accumulated direct trauma and weakness as well as a flare. Looking back, was there a dose level where you felt ok in the last year? Perhaps try 5mg and if that helps slow that reduction speed. 0.5mg per 3 weeks gives your body no time to decide if that is enough especially if you are dealing with exercise payback. Also, you may find that your adrenal function doesn’t recover at the same pace all the way to zero. I would also suggest you allow your body to have a break from being pushed whether it likes it or not and see if your sinews and bits recover. Anyway, that’s just my opinion from my own experience and from others who have also tried to exercise through it.
Am I missing it but I can find nothing in the FAQs under 'Tapering' to do with the bog standard advice and principles underpinning reducing that DL and PMRpro( and others) offer as a repeated litany to folks trying to find a reduction regime that works for them? If I'm right would a bit of cut and pasting to the Tapering heading on the FAQ's not be a good idea. Stuff like the 10% reduction, not reducing when you are off on hols, leaving it long enough on the initial dose to mop up all the inflammation etcetc.
Or at least copy the section on tapering in DLs intro into the FAQs under Tapering???
I do send my introductory post to all new patients that raise a post [although not everybody writes one, so obviously I cannot guarantee that all newbies read it] and do suggest that because it is quite long they do keep a copy as a reference.
I also offer to send a word edition if they have prefer [although that like any book obviously is not dynamic], so saving the post on here is better, as I do review all my info in the FAQs annually… usually at the turn of the year.
I could consider C&P the relevant info into my Tapering Plan post, or even adding a new Post, but as I’m on my holibobs at the moment it might have to wait..
It seems that a lot of queries about tapering difficulties come from folks who have been long suffering but don't seem to have picked up on the basics and reasoning behind it, having got themselves into the lengthy yoyoing that attempttocycyle has. My comment relates to visibility/accessibility in the FAQs not the comprehensive content and distribution of your personal info which is always great. Hope you are enjoying yourself, all the best for 2025.
I agree, and both PMRpro and others spend a lot of time setting them on the right track…but very often they don’t come on this forum until they have tried and failed.
Not always easy to preempt if they aren’t on forum..😊
When we moved to Normandy over 20yrs ago the websites here were awash with dancing cows and singing apples.........maybethe FAQ logo needs a little something...suggestion anyone?😃
As PMRpro says - HU platform, so outside our remit… and as a medical forum first and foremost it has to be appropriate.
PMRpro and I spend a lot of time on here and we give our time freely, and that’s our choice, but we are not web designers, nor paid employees of the charity, which some seem to think. Neither were other members who helped initially with the FAQs.
The FAQs took a lot of time and effort , and no matter how many fancy bells and whistles are added or how many times we remind members of their existence we cannot make people read them. Leading a horse to water..and all that applies.😳
Well said DL and thank you and PMRpro for your splendid and constant
work helping us all get through very difficult times in our lives. I have learnt so much from you both that I would never had got any were else. Happy New Year.
Sound advice and relevant for me at this point thankyou. Haven't managed to get lower than 5mg after 4yrs, back up to 7.5/8 and much slower tapering : 0.5 mg reduction at 8 week intervals. Taking heed of more gentle exercise advice, and increasing by 1mg at stressful times as necessary- hope this is a good idea.Thankyou.
This isn't "PMR again", it is "still PMR". What we know as PMR isn't the actual disease process - it is the name given to a set of symptoms that are due to an underlying condition, of which there are several and which should be ruled out before a diagnosis of PMR as we mean is made. In our case, the underlying condition is an autoimmune disorder that creates a disordered effect of IL-6 and a few other mechanisms of creating inflammation that settles in particular positions in the body to produce "typical" PMR and which responds dramatically to moderate doses of pred.
I have something similar and I was undiagnosed for 5 years. There are several of us on the forum with a form we call Long PMR - just to maintain modern trends!! I don't think after 4 years you qualify for our elite group (believe me, you don't want to!) but we do think that a long period before diagnosis and management with pred contributes and is made worse when ignorant doctors mess us about with ill-advised tapering approaches so we releatedly flare.
The pred cures nothing - it is a management strategy to control the inflammation until ths underlying autoimmune part burns out and goes into remission which it does eventually for about 95% of patients. For that time, you need enough pred to manage the inflammation to suppress the symptoms. If you go to too low a dose, then the inflammation produced is not all dealt with and will start to build up until sooner or later there is enough for you to feel.
Your underlying cause of PMR is still there and active. And you aren't helping by reducing far too fast even though I'm sure you don't think you are! The lower the dose - the slower you need to go. I would think your current "lowest effective dose" which is what you are tapering to find, not a relentless slog to zero, is probably 3mg. PMR can last anything from more or less 2 years to well over 10 years and counting. Four years is bordering on an average sort of time - half of patients take up to just under 6 years to get off pred. That means half of us take longer. About 5% of us have it for life.
I suggest you try the flare protocol - add 5mg for a week to 10 days and drop back to 3 or 4mg - whichever you are sure you DON'T have any problems. You have been tapering fairly fast, not allowing long enough to be sure the new dose is really still enough. Then give it a rest for a month or two and wait for the spring. Amazing the effect that rest from worrying about tapering can have.
I was stuck at 19mg in a major flare after my husband's death. I had struggled to get any lower than about 12mg for some time before that (I had been on pred for nearly 13 years at that stage). Because he can, my rheumy here in Italy put me on Actemra/tocilizumab. That has allowed me to taper to 7mg - but as soon as I attempt to get to 6mg, within about 3 weeks bicep and wrist pain returns which in a short time makes using my arms almost impossible. I can;t get lower because the other causes of inflammation besides IL-6 are probably involved and they need pred to manage. The Actemra deals with IL-6 and nothing else. So I am on fortnightly injections of Actemra plus 7mg pred - and am completely stable and well on that.
At present - you need 3 or 4mg - you have achieved your objective, the lowest effective dose. It doesn't mean you won't get lower, just not yet. And you are not exceptional yet - one of a fairly large peak of people who need pred for more than about 3 years. You can't forecast how much longer - all you can do is accept you are pretty well managed on a low dose of pred and don't try to push the boundaries too far. Settle where you are, give it a month or three and then try 1/2mg over at least 4-6 weeks - using one of our slowed tapers and see if you can get lower. It doesn't matter if you can't - give it a bit longer and try again. At some point that 1/2mg will work and you can consider the next 1/2mg. Prof Dasgupta has told us that he has kept patients at 2-3mg long term to reduce the likelihood of a return of symptoms.
The long periods before diagnosis, messing up tapers that lead to yoyoing and returns of pain possibly do contribute to it being harder overall - both the immune system learns to be disordered, disorganised and being naughty, and our bodies learn the pain patterns and our brain and immune system don't want to forget it. I believe that keeping the symptoms as well controlled as possible by taking the amount of pred you NEED and not poking at the immune system any more than you must by avoiding stress on it both contribute to a decent life with PMR. You don't know how long it has come to stay so it is up to you to make the best of it and accommodate it. And that is up to you.
Please can I join the club, I have reached my 8 year anniversary of PMR and in March it will be my 8 year anniversary of diagnosis.
Also I would like to say what a fantastic thing you do, you and Dorset Lady, giving up your time to read all posts and answer them. You deserve medals.
I confess I am here as an extremely grateful lurker with a different autoimmune disease, not PMR. I came upon this forum in my quest for figuring out the best path with Pred dosage/tapers and cannot tellllll you how helpful the advice here has been. I intuitively feel the same rules apply to other conditions under the umbrella of myositis. But you are so brilliant at explaining these things, and I would love to hear if you agree, at least generally? I know you will feel obliged to not advise people irresponsibly about other diagnoses, but to me, the advice applies universally to Pred use! TIA…
Of course it does - and you are not the only "lurker". We welcome everyone who acts responsibly and kindly. We don't like trolls - they do appear at times. I don't advise about the disease per se - but the use of medication and other approaches in management of any autoimmune disease. That is at the basis of all our illnesses and they have commonalities so exchange of experiences is always valuable.
Hooray :), and thanks for quick reply! And because of your tips here, I feel empowered to boost my current 20mg to a holiday stress level of 25 for a couple of days (wish I’d done that sooner, had a Christmas flare!), then back down to 20, then continue next week to my desired 15 and stay there for awhile! Happy holidays, and thanks again so much for all you do here!
Many thanks for a full and reasoned response. There's alot for me to work at but finding a working level for the prednisolone and slowing down any reduction accordingly sounds an effective approach. The realistic figures for duration of the body's response were refreshing, as was releasing this pressure on reduction of prednisolone at all costs. I too easily forget that I am ill, and am not the person I was. I like to feel that I am adaptable, but perhaps....
I don't actually feel that I overdo my exercise , and certainly it helps my attitude and mental state, but I see that I can put too much pressure on at times. As an aside I feel that the mental health issues and low mood have been at times the more pressing-- and I am never clear whether this is the prednisolone or PMR or both. I have been offered various medications concerning lack of sleep, anxiety etc, but have been surprised how destabilising these can be. An open CBT forum helped. ..... But for me, physical exercise seems to be key.
Just take it easy on the reductions.
Many thanks again for your and the other suggestions... they seem to be the only guidance out there. Season's greetings, and the best for 2025.
Most people don't think they overdo their exercise - but they often forget that they have a new normal and that it can vary from day to day. And you only find out when it is too late to stop!!
"I am never clear whether this is the prednisolone or PMR or both" - either or or both can be blamed! Very difficult to work out which.
I really don't know how some of the members do these marvellous exercise regimes with PMR and GCA. I used to be a very active horsewomen and walked for miles in the beautiful New Forest plus having a very active working life involving very early starts and maintaining a big garden. When GCA struck or rather was finally diagnosed, the pred gave me an artificial boost and I went back to gardening, but soon found out that the GCA dragon didn't like it at all and waved its spiky tail making me soon realise that I needed possibly for the first time to listen to my body. 4 1/2 years on I still have to and sleep when the dragon is grumbling at me. I feel a bit guilty when I read the posts about peoples exercise regimes but know it wont work for me. Thank you for all your hard work keeping me on the straight and narrow. The dragon still opens one eye at me when I get up the garden and approach the compost heap with a spade.
I can't tell you how timely and helpful your advice is! I spent Christmas night with my sister telling me I need to get off the prednisone because it is killing me. That I am just masking the symptoms and not doing anything to help the underlying cause of the pain. That the next time she sees me it will probably be at my grave.........And I wondered why I was having a horrible flare before the holidays😲😲
I wish people would get this "masking the pain" out of their heads. And accept that there are not cures for everything,
The pred combats inflammation - that isn't "masking". I assume she takes a painkiller for a sprained ankle? No different. She is masking the pain while the illness heals. There is no cure for the underlying cause of the pain, it will go away in its own time - does she want you to live in pain? If so - I'd avoid her!!!
Lots of good comments here already, but as SnazzyD says three weeks is not really long enough to see if things are going OK. For me, now a few months off Pred after four years and a few months, 0.5mg every five weeks worked well. However, that is a plan not something set in stone. If if doesn't feel right then extend it by a week or two. Pushing through pain during activity is a definite no go area which will definitely come back to bite you in the bum, gentle exercise followed by rest days and then increase in small incremental amounts with appropriate rest inbetween.
late to this thread attempttocycle. Very few cycle to the level I achieved at a good age. It was my life but I stopped. I didn't attempt to ride through PMR and GCA. I had been doing this for years prior to diagnosis and Pred. and the subsequent damage was crippling. Initially it wasn't even possible to continue cycling. I did however overdo jobs around the farm and suffered flares accordingly. Cyclists have a particular attraction to overdoing it and hardly ever realise this. After three years or more I am only just beginning tentatively to exercise on the turbo and rollers. I use my mountain bike to cycle to my neighbouring farmer friends. Soon I will try a 10mile round trip to see how much I have lost. If you are still feeling niggles it's likely PMR is still with you. I'm down to 1mg and staying there for another 4weeks. I'd say take a long break and see if the niggles persist or stop. To see a result any experiment only needs one variable at a time.
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