I was diagnosed with PMR April 2021 15mg. Successfully tapered to 5mg and I’m now down to 4.5mg. I’ve been on 4.5mg for almost four weeks. I take enteric coated Pred at around 11pm . The last couple of weeks I’ve found myself waking at around 6am with quite severe pain in my arms, hands, shoulders and hips. The pain is waking me and I feel miserable. Once up and moving around the pain eases. My hands feel stiff and warm. I’m extremely tired. Paracetamol helps a little but does not get rid of the pain completely. My rheumatologist wants me to keep reducing until at 2mg and then make an appointment to see her. I’m wondering if I should increase my dose a little and see if I feel better? Is this a flare. Thoughts anyone please? 🤔
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Pangolin43
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Does sound suspiciously like one, and if you have pain you shouldn’t really be reducing what a caring Rheumy you have -or haven’t you told her about it? Or were those instructions pre pain?
You could try extra Pred for a few days - say 7 or 8mg and then drop back to 5mg.
At only one year in, your PMR is obviously alive and kicking!
See a month ago you mentioned hand issues -so why did you reduce? Or did you get them sorted with extra Pred and now returned?
Hi DL and thank you for response. The hand issues from previous post resolved themselves. I spoke to rheumatologist about aches etc.... she said to not be afraid to continue to reduce Pred and some of what I was talking about was natural ‘ageing’ and to continue reduction until at 2mg. Because my ESR and CRP had dropped she felt the ‘clinical picture’ was good and to keep going. ☹️
She might feel clinical picture was good, but she’s not the one suffering! I would be treating as a flare - and once cleared returning to 5mg, no lower!
I have on several occasions been told by both my GP that bloods are a blunt instrument and that patient symptoms should be very much taken into account both for diagnosis and treatment.
Even my Rheumy, who does my blood workup quarterly and ESR & CRP results have been good, stated that unless I was having symptoms at the time of blood draw wouldn’t expect a rise.
I question the relevancy of continuing to do these tests routinely. I understand why when doing original diagnosis, but once the disease has been identified I’m sure the pain hits before the ESR or CRP increases.
These values exceeded upper limits when I went to the emergency room, but since have been normal, and at no time was blood drawn during a flare. The pain I experienced was exactly where it was when PMR first diagnosed and of the same type, just less intense.
My Rheumy never alluded to being able to reduce Pred just because the ESR & CRP were ok. I sometimes think they are just checking off boxes.
Mine are done once a year - but that's not for the PMR. They never went out of normal range - CRP was never even slightly raised, just the ESR to 16-18 which is high for me but no-one notices. So why should I pay?
Both of mine were initially. In fact the CRP was so high the hospital staff called the lab to see if their methodology reference limits were different. Took another sample, results still in the same order and that’s when they gave 80mg Pred. Extreme pain moving and it felt like I was in a 40deg F room. I got to shaking so badly they wrapped me in heated blankets. They didn’t waste any time triaging me. Lol
I agree with DorsetLady. Your bilateral symptoms clearly indicate that the inflammation in your body is not being managed by an appropriate dose of Pred and that you are reducing too quickly and/or by too large a reduction. The thing to remember is, 'the lower the slower'. If you continue to reduce I'm afraid that you may well be setting yourself up for the kind of flare that will necessitate larger doses and a longer journey to remission.Take care.
Did your rheumy say WHY she wants you to reduce further before she sees you? Who made the PMR diagnosis? And has the rheumy ever expressed any doubt that it is entirely PMR caausing your symptoms?
Pain that improves when you are up and moving around isn't really typical for PMR and maybe she thinks it could be something else. Certainly, pain that improves, albeit only partially, with paracetamol is not typical of PMR at all.
Hello. She wants me to reduce further based on the level of inflammation being back to normal. The rheumatologist made the diagnosis although it was not clear cut and took a while as I had Long-COVID.
No - the blood results are in normal range, doesn't mean the inflammation has gone, just means the pred is keeping enough of it in check to not raise the blood markers which are very unreliable. Symptoms should always trump lab results ...
You could for a few days - up to a week to 10 days you can then drop back to the previous dose without tapering, Knowing whether more pred helped the problems would be useful information to discuss what she is doing when you see her. But as I say, I do wonder if she thinks there is something else going on.
"some of what I was talking about was natural ‘ageing’"
How does she know? These crystal balls they all have that don't work if they did but know it ...
Yes. I think an increase is the best option. I wonder what the something else could be? I had the RA factor test at the beginning of all this (negative) but when I read about RA symptoms I feel it sounds like me. Also, if I up my dose and I feel better is this masking another problem? 🤔
Rheumatoid factor isn't reliable - it can be positive in someone with no sign of inflammatory arthritis at all and negative in someone with active RA when it is called sero-negative RA. The ACCP test is more likely to be meaningful but even it isn't 100%
It may do on the higher dose, but if it does once you come back down to around 5mg if it’s something else those pains will probably return. Sometimes it is a bit if trial and error ….
Your GP should know if you have symptoms you should NOT reduce. The tiredness may be coming from the adrenal glands having to wake up as well, so could be a double whammy.
Hello piglette. I did talk to GP as I needed more prednisolone. The GP said that as steroids are reduced to expect some aches and pains. He read consultant notes too and agreed that I should control taper. 🤔
"The GP said that as steroids are reduced to expect some aches and pains"
Possibly - but you have to learn to recognise the PMR pains returning because they shouldn't appear. They get worse over time, everything else should be stable or improve.
Yes. I think I find it difficult to differentiate because in the past I was very lucky not to have aches and pains on this scale. Since PMR was diagnosed I feel I could have so many other things too. I guess time will tell. I don’t know what I’d do without this forum 😀
Hi there Pangolin43, I have sympathy for you! I too was told I HAD to reduce quickly, and I did to 6mg. The pains returned with a vengeance. I posted my predicament on this site and had wonderful advice which I followed. I was advised to increase dose to when I felt virtually pain free. Within a day the pains went. It was put to me that of course we ALL want to get off pred but quality of life is important too. I am back up to nine mg and will taper to 8.5 next week for a further month. In this way I feel quite well and can enjoy life. The doctor still wants me to go down quicker but I just say to them that I want to stay almost pain free so would prefer not to. Of course this only works if it is PMR. I suppose as we get older we will have other aches and pains which PRED doesn’t touch. I don’t know much about PMR as I have only had PMR since last October. I was originally told by rheumatologist I would be PMF free in 14 months, I don’t think so. Slow and steady for me! Good luck and keep us posted.
Sounds like a flare to me. I would follow DorsetLady’s suggestion. It might just save the day. It really is better for your Adrenal glands to go slowly with half mg drops at your stage.
Morning Sheffield Jane. Thanks for your message. I had been decreasing by half mg every two weeks = 1mg over the month. I think one of the slow tapers on here will suit me better once things have settled again. 😀
Hi Pangolin. It sounds like a flare to me and I would certainly up my dosage for about a week/10 days to see if things calm down.
I had a similar experience when I got down to 4mg, so I increased to 10 mg for about a week. Unfortunately my fingers swelled up & I wasn’t happy about that, so my GP said to go back down to my original dose (I decided to stay on 5mg instead of the 4) and things aren’t too bad.
However, I’m getting pain in my shoulders & back of my neck, which I’m putting down to spending days painting our fences (and big fences at that!). I’ll see if things subside. Or maybe it is wear and tear as I’m approaching the big 70 next month🤣
Thank you for your reply Doraflora. It’s really good to know other people’s experiences and what worked for them. I often think I can do more and pay the price the next day. Look after yourself. 😀
Exactly the same happened to me on my last flair. I went back up to 10mg for 5 days then 7mgs for 2 days then back to 5mg and worked perfectly. I’ve decided to stay on 5mg for at least six months before I try again. I’ve had Three flairs when I tried to get below 5mg. Good luck. Hope you get sorted. 🤞
Yes. I’ll need a rethink when and if I get to that point. Ive wondered if some people do alternate days when reaching such low doses on enteric coated Pred?
Some tapers/doctor do recommend alternate days -but from a personal point of view only I think it confuses the body and probably isn’t the easiest or best thing to do to control PMR. However it may help the adrenals -sure others will give their views…and you have to do what’s best for you.
As DL says - depends on what works for you. Most people can manage a 1/2 tablet of plain predtaken in the middle of a meal - it wasn't until I got to 4x 1mg plain and 1x5mg that I experienced the gastric rodent having a nibble. Which does make me wonder if it is as much the fillers in the tablets as the pred itself.
It is also possible to get liquid pred which can be measured very accurately.
Hello 123mossie. Ihave thought about this but don’t want to change unless I really have to as things have gone reasonably well so far with enteric coated Pred. I may have to consider the change if I ever get to below 2mg 😀
Forgot to mention - the DSNS tapering approach was also partly developed for people on enteric coated pred to get below 2.5mg as at that time e/c pred only came in 5mg and 2.5mg. You just start with a long period between the new dose days and repeat each step a few times. It means one day with no pred at all but it did work for the few people who tried it who were totally unable to tolerate plain pred,
Hi. I was diagnosed the same time. I’m at 7mg so I wonder if you’ve reduced a bit too fast? I’d go back up a bit. It’s not a race. Don’t be in pain. You’re right it’s miserable. X
I never did. I just reduced per my doctors instructions and experienced the same pain as you in my neck, shoulders, and arms, I was told it was because my adrenal glands were not working because of prednisone. I am finally off it after 3 yrs. and yes I still have some pain in my neck and shoulders when I wake up, but it goes away or lessens when I move about. It’s my choice and I live with it. Just make sure you work with your doctor if you experience any pain that is too much to deal with and sorry you are experiencing this.
Hi YorkieShowBreed..... Thank you for your response. It’s lovely to hear that you managed to successfully reduce to zero. Did you stay on a low dose for a period of time?
Yes I did. I was started on 15mgs and was brought down a half mg a month until I reached 5 mgs. I stayed at 5mgs for two months then lowered to 4 , 3, 2, 1, 0 every 2 months. With each mg lowering I had some pain but my doctor explained that it was due to my adrenal glands not yet fully functional.
I am no doctor but your rheumatologist is being unreasonable . i just think they put you on these steroids and then want you off them asap . It sounds to me that your body is telling you you need more for now and gradually reduce . I think I am lucky . I was diagnosed feb 2021 and on a high dose . I did reduce gradually to 10 mg without too much trouble but after that gp too keen for me to taper down so the symptoms did return eventhough not as severe as at first . after that i took the wise counsel of all you on health unlocked and have reduced by half a mil a month occasionally having to go up a bit . It is hard going from 10 because cant tell if it s adrenals starting to work or pmr but in my case it was just tiredness and bit depressed not aches and pains . I am on 2.5 now which is nothing and have managed to start rambling again . Going uphill aches a bit but think thats just age ! Just take it slowly increase when you need . I may have to one day or it may come back but there is light at the end of the tunnel . I dont wish it on anyone but I wonder if a medic got this whether they would be more supportive .
Hello Mofred. Thank you for your detailed response. Well done for getting to 2.5mg. I’d be very happy to have this for a ‘maintenance’ dose for a longer period. Good luck with the rambling. 😀
Hi there! Just to add to the mix, I saw my rheumatologist nurse in February. At the time I was on 1mg, having got to 0.5 in December 2021 (with one day only at zero) and had to increase to 3 mg for about a week but had got back to 1mg. Anyway, he wasn't impressed I'd gone up to 3, moved me about and looked at my finger joints, then said he wanted me off the steroids (been on them since Oct 2018) and that I have osteoarthritis more than PMR. This came as a bit of a surprise to me, but I have had creaky knees, neck and knobbly finger joints for ages before PMR took hold, so am thinking maybe he's right. Anyway, I'm now going from 0.5 to zero very very slowly (for the second time) as I'm seeing him again next month. He's suggested putting me on methotrexate in the past but he knows how I feel about that!! So I guess I'm trying to avoid a battle and hope I can accomplish zero in time. By the way, my bloods (and symptoms) at my last visit with him were good so I'd overcome the flare in December by going up to 3, which proves increasing does work. All the best with you.
If you are doing OK on 1 or 2mg he would be utterly crackers to suggest adding MTX - Prof Dasgupat told us he kept patients at 2 to 3mg long term to reduce the risk of relapse. And while there are things I would disagree with him on - I don't on that and I'd trust his judgement way ahead of any rheumy nurse. 1-2mg pred has far fewer potential adverse effects than MTX.
He may not have been impressed - but it worked and you are back at 1mg so what's the problem? Had you not taken that 3mg you might have ended up in a proper flare and needing a lot more.
Thanks PMRpro. I agree with you completely. I think he was wanting me off the steroids as I've been on them for longer than he probably thinks I should , and he now thinks its more OA than PMR. Maybe he's right about that, we'll see what my blood markers show if I get to zero. He sounded better over the phone, I didn't enjoy the face to face appointment, he wasn't friendly and was quite direct. I said I wouldn't be dropping the 1mg for a few weeks, due to a house move, and even then it would have to be a slow taper rather than going cold turkey. Think that's why he said he'd see me in 3 months to check I've been a good girl!!!
Thank you Lonsdalelass for your reply. It’s always good to hear others experiences. I have wondered about osteoarthritis myself and if that is what my rheumatologist is thinking. However we can’t read minds and I just need to be patient and see how this evolves. I hope all goes ok for you. 😀
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