Thank you for your support in the past on this invaluable site .
I`m 61 and have been diagnosed with PMR in December of 2021. I had terrible pain in both shoulders , hips and hip flexors . I was put on 15mg of pred which had an initial wonderful impact . After 4 weeks however the symptoms got worse again so I was in creased to 20mg . This helped . Since then I have been tapering the pred very carefully and eventually got down to 8 mg about mid Sept 2022.. Throughout the whole period I have had symptoms of PMR but basically they were manageable. The last 6 weeks Ive had a lot of tingling (like pins and needles) in both forearms and hands (new symptom for me ) as well as bicep tendon pain.
Since mid September(last month ) I hit a wall of fatigue and increase the dosage to 10 mg with Gps approval . This helped for a week . Subsequently I have had some sort of nasty cold 10 days ago which still feels like its on my chest and most days I am still achey (so i take paracetemol)and my fatigue levels are awful again . Just gone up to 11mg without consultation with GP . I am at the point of sleeping almost 12 hours a night and feel unable to do anything physical at all without feeling terrible after . For example I mowed the lawn yesterday for 20 mins (tried to do it slowly and gently) and felt ghastly after. I would say that my fatigue levels are getting worse even though the cold is less prominent .
I`m really not sure what to do . Can colds or the flu affect fatigue like this? Should I up the pred more ? Any other suggestions
Thank you
Written by
Marek1
To view profiles and participate in discussions please or .
a. you shouldn't really have continued to taper with PMR pains, even though you considered them manageable - just shows the Pred level was not quite enough to control inflammation, and the end result is a flare...but that's done now, so no point in dwelling on it. But remember for future reference...
b. 8mg at September, probably added in adrenals struggling, hence the fatigue - see this link -
It's all a bit of a muddle isn't it, normally we would say for a flare following the advice contained in this - but not sure you can pinpoint your base best dose scenario....
Think you may need to go higher, but you do need to give the 11mg time to work... and mowing the lawn won't have helped.
You could try 15mg for a week, then drop down to 10mg - perhaps in two stages 12.5mg for a week, then to 10mg for a month before you than see if you can commence tapering, but slowly and only if you feel okay each time... but you probably need doctor's input..
Maybe the manageable symptoms were due to steroid withdrawal. I had a kind of similar phenomenon when I got to 6mg. There was always a bit of a dip whenever I dropped a 1mg step but when I got to 6mg the dip went on for much longer and it was like constant low level pain in my shoulders which was completely manageable and didn't stop me doing anything. That lasted on through the 5mg dose and it was only when I got to 4mg that the flare hit.
After much deliberation I've just dropped back down from 4 days at 10mg to control the flare, back to 5mg today on Docs advice. I was going to rebel and go to 6mg but I'm willing to take a risk for the sake of getting on the lower dose and if the symoptoms come back quickly I'll bump it up again by a 1mg increment. I don't know if it's a sound strategy or not but it's a risk I'm prepared to take for the sake of that all important 1mg less.
From reading the posts on here my impression is that from around 7mg the need to start your adrenal glands working again kicks in and this is often a sticking point for many as they (adrenals) completely stop working above this dose because they're not needed, and getting them started again when they do become needed is a bit like trying to start an old car which has been lying on the driveway for months and has a flat battery
Tapering down from 20mg last December to 8mg by September is pretty fast as well. Did your doc insist on a four weekly taper? That's what I was doing but it was too fast and I've managed to persuade the doc to let me go a bit slower from here onwards..
Thank you Gibson Les Paul . Yes the progress seemed good in tapering but its still not as fast as my gp wanted !! However looking back and listening to Dorset lady I was probably going too fast . I just want this horrible fatigue to stop , my life is on hold at the moment !!
GP has finally just been in touch and flatly refused me going above 10mg.! I didnt tell him I was on 11 mg alread\ What to do ? he wants me in for tests soon
Unfortunately not a lot you can do, other than stay at 11mg for time being and hope it works….and drop down to 10mg a day or two before you get bloods done. But do keep a diary and explain what’s been happening to you… is there another GP in surgery who may be more understanding?
Sadly PMR is life changing and it really can hit back at us. Things will get better if you treat it with respect and listen to your body not necessarily the doctors!
I would insist on a f2f consultation so they can see how bad you are - and they must come up with a plan. It is possible it isn't the PMR as such - but a version of post-viral fatigue on top of the PMR. Pred won't help that though, When you have a viral infection or even post-viral, exercise really can make things worse. You may be suffering from an accumulation of virus and doing too much while your body is under attack.
Hi it was just just the standard ,we want to get you off steroids answer . When I mentioned the sick days rule , he said thats for people in crisis where the vitals are poor etc. Ive printed off the sick day rules an am bringing them with me tomorrow morning to see another GP who is doing my bloods as my gp is off .
Your reply then has to be "And what are you suggesting as an alternative since pred is the mainstay of management of PMR and there is no replacement except a biologic which is not approved in the UK. PMR does not last just 2 years."
As for the Sick Day Rules - they are designed to PREVENT getting to the stage where you need hospital care. Under the current situation - fairly essential I'd have said.
The level of ignorance is astounding. No wonder the endocrinology world was concerned enough to produce the red card.
"it's a risk I'm prepared to take for the sake of that all important 1mg less."
Sorry - we don't ascribe to the concept that 1mg less is that important! Important is that the inflammation is properly controlled - had you not aimed for that 1mg less when you had all the signs of being very borderline you might have avoided the flare. If you have a good reserve while tapering it may take some time before the inflammation fills the bucket and overflows and you get symptoms. But that dull ache at 6mg was your body saying ca' canny.
It only takes a week or two of a higher dose to get a flare under control to catch up with that so important 1mg less. And when you allow that to happen it is often harder to get things under control again, Edging up a bit at a time rarely works well - because you are playing catch-up all the time. Biting the bullet and adding 5mg for a few days and dropping back to where you were last good works far better,.
what she said!!! I went through the same thing. It is awful. After months of jumping around I found the best dose so far. Perfection is not out there. But I had to go back to the beginning to get some control over the inflammation.....22.25. And things are improved. But my rheumy had a stroke at that dose....not happy. So she's pushing me to start to reduce although slower and lower than the first time. We will see what.happens. But fatigue and pain equal inflammation snd you have to take enough pred and you really can't do much....before I got my diagnosis last spring I mowed my small yard. It was awful...I was in tears from pain and crashed when I gave up and.went in the house and hired someone. This is one of many autoimmune conditions that I live with and I would say the most limiting. I founfmd you can do yhings and then plan to lay low or rest. You have to rest until.you feel better. So Marek1 take good care. Hang in things will improve....
PMPRO...it has taken a long time to see some improvement but hopefully it won't go off the rails again.
it's hard here...too many people and not enough docs...I am to see her.NP early Nov. I will see where things are then...have a conversation with her. If it is not better I will go looking. But this problem is prevalent...do you call their office and say..." hi...how do you feel about prednisone." I could talk to my primary care too. It is so crazy. When I lived in Washington DC it was a lot easier....but alas had to move.
I haven't read this whole thread and feeling a bit spaced out because just back home after a very long train journey, but my reaction what you should do - find another doctor. There is no point taking pred if you aren't taking enough. You then have the downsides of medication without the proper benefits. If it's hard to find another doctor then you'll have to try other tactics with the current one. Maybe take a companion with you to next appointment where you are going to be talking about how terrible you've felt when tapering too far too fast....
Okay, I've just read more. I am wondering whether your doctor thinks you may have something other than PMR? Is there a failure to communicate here? If they think you can manage without pred, then they need to explain to you what their reason is for wanting you to come off it, and also how else, other than PMR, do they explain your symptoms? You should not simply be told to come off a medication which has helped without a good reason and, importantly, some hope that further investigations come up with better treatment, or perhaps confirm the initial diagnosis and the need for pred at an approriate dose for you.
When you say 'The last 6 weeks Ive had a lot of tingling (like pins and needles) in both forearms and hands (new symptom for me )' that sounds familiar.
I fell ill in mid March 2021. I was diagnosed at the end of June 2021. The tingling started at the top of my arms and worked its way down to my hands. I didn't have it untreated or at the start of steroids (15mg). I think it appeared at about 8mg.
I went back up to 10mg for various reasons in October 2021. The tingling probably stayed with me until I got down to about 7mg again.
I don't know what it was and my GP and rheumi were totally disinterested in it. I feel that it might have been a steroid side effect that showed up after about 3 months?
yes , from my limited knowledge I would agree as it all seems connected with upper arms too .
Can I ask please ? As you are one of the main Advisors /Contributors and Pillars of this site , I would like to try what Dorset Lady mentions . to boost to 15mg pred to get some relief from the fatigue and hopefully bring all pains under control (although they are not as debilitating as the fatigue ). I really cant cope with this state. (I`m beginnin g to think that the bucket has been full for a while and its starting to hit me) And then reduce in a couple of stages back to 10 ish ? I am waiting for gp to ring me back tomorrow so I can get his input , however I think he will have a hissy fit( so see me going backwards in his opinion ). I am mindful of what you say that the pred is there to help us manage the condition and at the moment that is definitely not happening ?
Go for it - if the pred isn't managing your symptoms it isn't doing its job. ANnd the main reason for that is that you are not on enough pred.
You may not think the pain is as debilitating as the fatigue - but constant pain, even at a low level, is exhausting. It makes you depressed and that contributes to the fatigue. The upper arms are very PMR-ish too. I agree, you need to get it all under control - and then work from there.
remember GP's tend to focus on trying to reduce the cummulative dose of preds but is forgetting that if you rush it you have lots of flares and so end up taking more over time. They do honestly have less knowledge of it than those with a lived experience of it - ie these wonderful folk here!
Hi Jane , I have tested negative again yesterday , 4th test !but willkeep checking . perhaps it was or is more of a flu and not a cold ? still on paracetemol every 6 hoiurs or so to keep aches down
Could be that you had Covid . Latest symptoms are fatigue ; cough ; runn6 nose & sneezing . I have found most of the pain is in my upper arm area is very similar to PMR discomfort
What’s done is done but after you have stabilised you need to go slowly and when you get down to lower numbers reduce by half a mg only listen to your body not the doctors!
I can’t comment on Pred dosage or what you should or shouldn’t be doing regarding a flare, others are much more qualified to do this. What I do know though, is that the more we push our bodies to do what they used to do before PMR, the more we end up back at square one. Together with slow careful tapering, we have to adjust our lifestyle to accommodate rest and recuperation. We just can’t operate as we used to in any way at all and expect to get better. It is a frustrating and isolating lifestyle, but I really believe it’s the only way back to good health.
I have just had Covid. Sore throat, runny nose, sneezing. Two weeks on I have become really tired, muzzy headed, with familiar aches and pains returning, which tell me that probably Covid has caused a flare of my auto-immune condition (not PMR). Just saying, Marek1!
I'm supposed to drop down to 4mg but I'm not going to until I feel OK, Marek. Will speak to the doc in a few days if no better, just to get her OK to continue on my current dose for a while. Hope that you're doing feeling better.
I've got Spondyloarthropathy, Malek. When uncontrolled I get fatigue, various aches and pains, and permanent headache. Currently taking Hydroxychloroquine and Prednisolone.
I really do feel for you, but my best advice is to speak with your GP. It is not really a good strategy to alter your Pred without medical advice. The main thing is to realise thst your adrenal glands have to catch up.....maybe this id exacerbating your tiredness symptoms.
I just looked through all of the replies to see if anybody had a suggested the possibility of covid.. and of course they have! Sometimes when we focus on our autoimmune disease we forget that could be other things going on in our bodies. I certainly wish you the best💞
l think maybe you are trying to reduce to quickly I am on 6mg after two And a half years and iam still very tired, would’nt think about cutting the lawn, l do manage some house work but very slowly hope. You feel a bit better soon
Five months later Marek and I hope that things have settled down for you now. Just wanted to tell you that I got a mild case of Covid a year ago which ruffled everything up for me. I had just reduced from 5mg to 4mg (maybe too big a jump in hindsight) when Covid hit. I rested (didn't know about sick day rules at that point) got over Covid but then everything went haywire and I had t go back to 10mg and have reduced again from there but more slowly. Now down to 4.5mg and can feel impact in shoulders but keen to reduce as steroids have now affected my knee (bone marrow oedema and a fracture). It is all a juggling act. At leas now I have a rheumatologist to guide me, last year I was left on my own to work out what to do. Luckily found this forum, but a bit too late to prevent the problems. I hope that you have fared better with your flare
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Not Feeling Great
Question about flare ups
Help please!
Cold weather and pmr
Help & advice please.
