Hi,I've had PMR since April 22. Started at 15mg and have tapered down to 5mg. Stiffness etc starting to return but don't really want to add 5mg and go directly back to 10mg if at all possible as I suffer from palpitations (SVT) and had lots of trouble with them around there. So going back to just above previous dose where I was OK - so going to 7mg. My question is how long should I give this to work before I am maybe forced to go back to 10mg?
Demoralised and totally fed up with it all!
Thanks.
How long is a piece of string? type of question really. No one can say for sure…
But if it takes longer than 2 weeks, then you’ll probably need to restart your tapering regime - and may not be able to drop back down to 5 or 5mg as easily as you could if you went to 10mg and cleared out the inflammation more quickly as we normally advise.
The problem is if you don’t get a grip of it properly you are likely to get into a yo-yoing situation which is no good for you …but of course it’s your choice..
Thanks for your reply. I've taken 7mg so far this morning at about 7am. If I wanted to take the extra 3mg can I do that now (9am) or should I wait till tomorrow?
Take it now -sooner in your system sooner it works.
Hi DorsetLady. Did I just hear you say that when going up on a dose due to a taper flare, you should go up higher than where you were before, because that makes taper down faster and easier? If so, how many days do you do that "higher than previous" dose?
Also, can you tell me more about this yo-yoing thing? What it is and especially why it isn't good. I had two major yo-yos because my rheumy twice had me taper too quickly. (For reasons I don't need to explain. Just know it won't happen again.) Could this yo-yo-ing have caused my tendinosis and the hamstring tendon tears I now have? What else could it cause?
This link contains the usual advice in dealing with a flare- and yes you need extra to get a hold of the inflammation that has been allowed to build up whilst your dose was too low - similar to initial situation -
healthunlocked.com/pmrgcauk...
Yo-yoing is just regularly going below the level your illness actually needs, having to increase dose for a few days/weeks…and then tapering too quickly - and repeating the whole scenario again. As you found out because your Rheumy wanted you to reduce too quickly.
Not sure whether that would have caused tendon and hamstring issues per se.
It is difficult to say if yoyoing caused tendonitis and hamstring tears - pred alone can make that more likely and so can PMR. The worst thing about yoyoing is it can make subsequent reduction harder for some reason, as does allowing flares to develop. Why no-one knows ...
Just been reading your post this morning, sferios, where you mention tendonitis. I’m having severe pain in one of my heels, making even short distance walking a big issue. I remember having same pain, same foot in the early days of my illness , when I first started with widespread aches in shoulders/ hips etc , back in 2020. It took many, many months of severe pain before I was eventually diagnosed, due largely to Covid restrictions and unable to get GP face to face appts back then.
With all the expertise on this forum, can I ask....is tendonitis a known link with PMR? I also started having pain last week in one of my wrists . Keep wondering if these might be arthritis or other rheumatic condition, being masked by steroids. There is a lot of both in my family.
Asked to see one of my GPs last week because of a flare up ( I had got down to 5mgs Pred, but now realise from all the advice here, this is far too low a dose for my current inflammation!) Took bloods to check inflammatory markers, advised they are up a bit but not exceptionally high - but this was how I was when first symptomatic. Is this other people’s experience? I appreciate if the markers were high, it would indicate either GCA or RA, so the medics don’t seem to take me seriously. I read others on this form frequently talk of their Rheumatologists. I eventually saw my local Rheumy after a 9-10 month wait in 2021, but she wasn’t really interested in PMR, said she normally only follows up patients with RA. After one appt , she discharged me back to my GP.
Any advice, please, about how I can find someone with more interest or expertise in PMR? Or do you all rely on sharing posts and advice from fellow sufferers on this Forum?
When I talked to GP last week , explaining about slow tapering and asking for some 2.5 mgs Pred, she seemed fairly oblivious! Just said she normally advises reducing 1 mg every month!!! Also said tendonitis would not be connected with my PMR. Can anyone help me with your advice and experiences?
Thank you all for sharing valuable knowledge.
I suggest you start a new post to ask such questions - only the poster, DorsetLady and I are likely to see this thread within a thread becase of the way HU works.
Tendonitis is an integral part of PMR, especially at the attachments to other structures:
Slightly surprised that a GP was THAT ignorant!!! Print this off and suggest it as bedtime reading:
uptodate.com/contents/clini...
Perhaps the best way to find an engaged PMR rheumy is to go privately to one recommended here - most of the best ones don't do private work but there are a few. Most rheumys - including yours it seems - seem to think that PMR is a banal problem and beneath their dignity to manage. In fact, it is turning out to be a very heterogenous disorder with many a potential pitfall, That is obvious from the uptodate link, maybe your rheumy needs it to read too!
Often a good, experienced and engaged GP is preferable to a disinterested rheumy - is there another who specialises in musculoskeletal problems in your practice?
Interesting articles. My tendinitis is in the achilles. It came on suddenly for no reason that I can see. But tendinitis from PMR apparently occurs in the adjacent structures (from pelvic girdle, including hamstrings) so I guess I can't blame PMR. There's plenty to blame it for, anyway.
You weren't given a quinolone antibiotic? Pred can cause achilles tendinitis, so can quinolones and both together is even more likely.
No antibiotic. I am pumping blood to the achilles with heat and TENS with some success. Much better than a week ago. Thanks for the info and I'll be aware in future to try to nip it if it returns.
Thank you very much PMRpro for your advice on how the forum works. I’m just a new starter to it all, so in future if I have a specific query, I will pose a general question to all, rather than reply to a specific thread. Frankly, everyone that replied about the link between tendonitis and PMR, has been so helpful.Can’t thank you all enough.
The prompt responses from PMRpro and Dorset lady are particularly helpful and appreciated , when we are all so adversely affected by the whole PMR journey, which as we all know is not just about aches and pains, its also fatigue, low mood, reduced energy and motivation etc etc.
I’m very grateful to have found you all, and will certainly be looking up the new links you’ve just sent about ‘ updated information’ on PMR.
Agree with PMRpro - if you are looking for recommendations write a post saying approximately where you life and how far willing to travel. .but as also said, a good , interested GP [although yours doesn't sound spot on!] is better than an unhelpful Rheumy.
I am in a similar situation to you, most of my pain is due to painful tendons, along with hip and shoulder pain. I saw lots of physios because the GP's all said it was old age (I was 55🙄) and that I needed physio to get me going - I pretty much didn't see the same physio or GP twice until eventual diagnosis April 2022. However, the very last physio I started seeing in October last year was awesome. She actually knew about PMR (physio before her had tried to refer me for surgery🙄)
She said that some PMR pain can be tendonitis as much as it can be muscle pain. After numerous tests/scans/x-rays on my hips and shoulder, and checking to see where my pain actually is, she said mine is pain in my hip and shoulder tendons and I have some very very gentle exercises to stretch them. I also have plantar fasciitis and Mortons neuroma in my feet, which may be connected, or may be inflamed due to the very long delay in my PMR diagnosis and everything being inflamed for years.
I would suggest finding a Physio/Rheumy/GP who is more aware of PMR - for me the physio really helped and the GP that diagnosed me is a trainee who knows his stuff! It was my GP that pointed me in the direction of this forum.
Thank you everyone. These are all helpful responses. I am actually happy to learn that tendinosis is associated with PMR. It makes me think my diagnosis is correct. My only follow-up question then is to PMRpro...
You say that pred alone can cause tendinosis. And herein lies my conundrum, and the main thing I'm trying to figure out (as you have read in my other post). Am I on too high a dose of pred, or too low a dose? Is the pred, itself, causing my current symptoms (including tendinosis, which is chronic tendon inflammation), or is it the PMR and I should actually go higher on the pred?
Pass - no idea! You start with a dose that is plenty to manage the PMR inflammation. Then you taper the dose slowly, a process called titration, to find the right dose for you overall. Everyone is different, the disease is different, the response to pred is different, your expectations and needs are different. It is a work in process.
Ok. I've decided not to go down yet. I'm sticking with 25mg for now and will monitor my symptoms more. My understanding is that if I'm too low on the pred, then my symptoms will get worse over time. If they continue to stay the same for a few more weeks, I think I should then assume that my quad aches are *not* related to PMR inflammation.
You don't stay at the plus 5mg for long - just long enough to do a bit of a springclean and then you go back to the last dose you were good at - hopefully just 6mg. If it is just stiffness starting to return you may only need a few days but we promise that works better than edging up a mg at a time. And if you let it escape you - it will be back to the higher doses for longer.
And from now on, only reduce 1/2mg at a time and stay at the new dose for longer to be sure it is still enough. But have a rest from reducing for a month or so. You are at a low dose now, there is no rush,
Thanks for reply. It's stiffness plus a bruised sort of feeling in neck/hips/legs etc. Just worrying about the palpitations really as I have them anyway but on higher doses of pred was getting them up to 7 times a day which totally does my head in and makes me feel as though I daren't go out anywhere!
I know that feeling but my a/fib isn't the pred and it's been going mad for nearly 5 months. This should only be a few days providing you strike while the iron is hot.
Thanks for replies. I was doing OK down to 6mg, then went to 5.5mg then to 5mg, staying about 5/6weeks at each stage. But it would seem that perhaps 6mg is me for now! Just demoralising when you think you're doing alright and you're suddenly brought up short isn't it? Thanks for the advice. Hope your a/fib gets sorted.
When I've started to flare I've only taken an extra 5mg until it's cleared the symptoms of the flare, then dropped down quickly to the dose where I last felt okay - so you might not need 10mg for more than a few days.
Hope everything is back under control for you soon 😊
It is SO demoralizing...but one can only do what PMR allows. I got stuck at 5mg for almost a year. Now got down to 4mg but even using the dead slow method had to give up trying to edge to 3.5 for several months. I will try a one-day dose this week of 3.5. It's been 3.5 years since PMR/GCA took over my life. I am hoping that I am one of those who get off the steroids at year 6. (the average length of time). Gently gently is what I have learnt from all the advice on here.
I do hope you get back to a stable state soon.
I keep trying to cut down from 6 but pain and stiffness come back so settling for 6 mg of pred a day again. I believe under 7.5 is a low ish dose.
It is a lowish dose -but most doctors would like you lower. But that really depends on your illness - hopefully one day you will get lower, but don’t push it -as you discovered - if it’s too low, it’s too low!
I think we have to remember that the steroids can mask arthritis- so some stiffness may be due to that. I got to 6mgs and had bilateral pain across the shoulders so went back to 6.5mgs. Morning generalised stiffness improving as the day goes on.x
Hi. That is exactly what is happening to me at this time! Got to 5mg so pleased, then wham stiffness again. I have now upped it to 7 and a half and will try for 4 weeks, at the moment my mobility has improved. I will try this for 4 weeks and reduce by half a month. This is my choice as I am due to see my rheumatologist in May and will get advice then. I too, like you am so disappointed, I thought I was doing so well!! Good luck.
I’m grateful for your post this morning as I’m exactly in the same boat. I just don’t know what is happening. I think I have ai and an injury, bursitis in the hip but it could be a flare? A little bilateral seizing up at times - flare? I was thinking of adding 5mgs this morning and risking an Afib episode but I’m ok this morning 🤷♂️. So? The trouble is the pain will be sorted by the pred whether is is a flare or ai so I shall be none the wiser and no closer to reducing. I’m starting my fifth year of this and I am totally confused and rather fed up ☹️. Oh I’m on 5.5mg. If I go to 10mg I will probably have an alarming Afib episode where the palpitations are visible and I have to take beta blockers which don’t seem to work straightaway. The last place to be right now is A&E!!
I totally sympathise! It's such a delicate balance and one thing can completely throw everything else out! I'm on betablockers anyway and have been for years but still get palpitations sometimes and the pred at higher doses made them so much worse. Thought I was doing well as had got down to 5mg but was obviously a step too far, totally demoralising!! The stress from just having this damned awful illness must just make it worse anyway!!
Ditto ditto! I wish you the best and let us know how you go. I spent 4 months undiagnosed for PMRGCA four years ago and I do remember having better days and worse days. Today is good but……….? I’m going to stick on 5.5mg
Wow, thanks for this thread - this group continues to amaze me. I’ve recent had unexplained palpitations, foot pain, wrist pain and it sounds like I’m not alone. Always a good feeling as I attempt to be patient with this blasted PMR. Thank you all.
Tapering!
Tapering
Tapering
Tapering
