I was diagnosed with PMR in Dec 22 and have been on a rollercoaster of Prednisolone doses From 20mg-0mg in the first 6 months, which I feel are part of my problem. Went up to 12.5 after being off completely for 2 weeks in May for a PET Scan, and have been Tapering since July, currently on 7mg and on a quick taper of 1mg per month.
I saw my Rheumatologist last week, and apparently because my ERS and CRP levels are in the normal range I am cured of PMR, despite only having had 4 weeks pain free in the last year, when was on 12.5 mg. But apparently my pain is residual pain left over from the PMR, like when you get a persistent cough after a chest infection, but they don't give you more antibiotics as the infection is clear. So I must follow the guide lines and continue to reduce by 1mg every 4 weeks as she can't allow me to continue on the steroids. I have asked if I can go slower, say 0.5 mg every 4 weeks, asked about not dropping by more than 10%, she flatly refused. I've checked the Rheumatology guidelines on this site which say 1mg every 4-8 weeks, therefore what I asked for is still within the guidelines. Every time I reduce the pain gets worse after about 2 weeks.
When I showed her my pain diary, which she asked me to complete, she "Googled" PMR and showed me the headline that PMR is felt in the hips and shoulders. Then she said that I wouldn't be feeling pain in my legs, neck and jaw (Muscular not GCA) She now says that my PMA is gone but it has triggered Fibromyalgia ! she offered me hydrotherapy and suggests that I discuss Amitriptyline low dose anti depressant for the pain and I must get off the steroids.
This feels so wrong, I think I need to ask for a second opinion, has anyone else been told they now have Fibromyalgia?
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I think you need another opinion. Of course your levels are in the normal lrange because the prednisolone is doing what it should be doing. It doesn’t mean you are cured! And I personally have never heard of PMR triggering fibromyalgia.
Leave, now. Of course your markers are low - you are on pred!!
And yes, of COURSE it came back when pred was reduced from 20 to zero in 6 months - PMR lasts a long time and pred cures nothing, it is a MANAGEMENT STRATEGY ongoing. What did the PET-CT show? I suppose it is possible that that didn't show PMR but I assume it did?
If you ask for a second opinion, get it from another Trust, not anyone she works alongside or you run the risk of them backing her up even though everything she says is, at best, doubtful.
Thank you I felt like I was going mad. At the start Locum GP put me on 20mg for two weeks then nothing, come back if pain returns, which it did GP then put me on 20MG for a week and told me to come back if pain returned, which it did but we tried to manage dosage between us. Finally saw Rheumatologist In March 23 as I was only 55 and pain and stiffness in jaw was so bad I couldn't open my mouth wide enough to eat a banana. Rheumy then asked me to reduce steroid from 12.5 mg to Zero in 4 Weeks so that I could have the PET Scan, so timing wise two weeks on Zero, at that point my walking was so slow that I couldn't keep up with my 80year old mother in law. Unfortunately the scan showed nothing, maybe the steroids were still residual in my system?
But I do think that the yo-yoing has aggravated things, I've said to Rheumy that surely my markers are down because of the steroids, all she says is that clinically she has nothing to justify me to be on such a high dose of steroids. She also said that she would get it in the neck from her boss to allow me to stay on them, as she has already been torn off a strip for letting another lady stay on steroids who is having similar problems to me, although apparently I am atypical. Also she would be in trouble with other hospital departments like the eye clinic or A&E, if they find out what dose of steroids I am on .
I will speak to my GP about a referral outside of our Trust
If her boss and other departments within the hospital think that about 20mg, then heaven help anyone who has to be treated for GCA and the high doses that requires.
What a shambles… do hope you can get a referral outside your Trust.
Have they also ruled out GCA?… I may have missed what you said in this regard but it was failing the banana test!! that made me see the doc who referred me for GCA biopsy which was positive when I was in my second year of PMR 🌈🙏
Awesome advise! Good grief it blows my mind how many rheumatologist know so little about PMR. Worse so many do not stay up with the latest peer reviewed studies. They seem to depend entirely on Pharma sales reps for the continuing education 🙄
Think you need a doctor that knows something about PMR, as the current rheumatologist doesn’t appear to have a scooby!
Sometimes PMR and Fibro can be confused at the beginning…and there are members on here who have both and hopefully will explain more.
If you say roughly where you live, sure you will get some suggestions for a Rheumy… and can you pay for a one-off private appointment should that be necessary
My improvement in symptoms within 24 Hours on steroids I couldn't reach to put my socks and hips were so tight I could only waddle at its worst, Two months before I was relatively fit, dancing twice a week and walking a lot. I'd say fairly conclusive PMR.
I think she is clutching at straws so that she can fit me into one of her boxes
I live in West London, so hopefully I'll find someone for a second opinion
The lack of evidence on the PET-CT is problematic but I don't think even that is definitive.
If private is an option, then Rod Hughes is our go-to in the London area - Chertsey, down the road. If it all improved with pred - wasn't fibro, And PMR doesn't morph into fibro. "Only 55" is a piece of nonsense.
Did the jaw problem also improve on 20mg? Have they accounted for that? And what is atypical?
Jaw stiffness took a while to go completely But pain eventually stopped on 12.5mg for a month stage. Pain is creeping back in now that I'm on 7mg.
Atypical , because of my age and my reaction to the steroids. She did want to put me on Leflunomide, but my Alanine liver blood tests tests were too high, Liver has been investigated, but no other issues found.
The problem as far as they are concerned is that I am still in pain while I am tapering down!!!!!, and that I' needed 12.5 mg to make me pain free.
I just wanted to stay on 10 for longer to allow my body to settle after all the ups and downs. I has only a little pain and could do 95% of my usual activities at that level, I hoped that a few more months would get me to pain free without having to go back up, and then slowly reduce listening to my body. There is the Bristol Royal Infirmary tapering plan which allows for a year at 10 before reducing which I've seen on this forum. But she wouldn't listen to that at all.
PMR lasts AT LEAST 2 years - they are always in so much of a hurry and they cause the problems that worry them. You need at least a month at the starting dose. down 2.5mg and another month there. You should never feel worse at the end of a taper step than you did at the start - and when symptoms return you go back to the previous dose that worked and try smaller steps. If 10 was good, don't see what they were were complaining about. Blinkers. Biggest problem we have.
Hi, yes, I am 48 yrs old and was diagnosed my GP with polymyalgia. My bloods crp low, my esr low also. My wbc high which indicates inflammation. GP put me on 30 mg prednisone initially, tried to taper but pain increased, back up to 30 mg. DR referred me to rheumatologist who believed I was too young for polymyalgia so diagnosed fibromyalgia. Tapered off prednisone over 5 month period as prednisone doesn't help with fibromyalgia. Still in pain, some days can barely walk, had physio which made pain worse...so no idea. Sorry, no advice but you have my full sympathy.
I'm sorry to hear about your difficulties, but it is interesting to hear other peoples experiences. But if your pain improved with Steroids surely they did help? so not Fibro? The biggest problem is there is no specific test for either condition.
Rheumatologist did say that the Amitriptyline is about 10% of the dosage used for depression. She said it works on the nerve messages sent out by the brain which reduces your response to pain
The prednisone did to a degree help, the pains never went away. Paracetamol helps too which was 1 reason rheumatologist thought fibromyalgia (as paracetamol doesn't help PMR). I hope you get some answers.
I’ve been on Amitriptylene for over 10 years for back and sciatic pain but it did nothing for my PMR when it started about a year ago. I’m currently on a slow taper from 7mg to 6.5mg pred which controls my PMR pain. I’ve never seen a rheumatologist and with the help of this brilliant forum I’ve brought my GP around to our way of dealing with PMR.
You definitely need to bin your rheumie who doesn’t seem to know anything about PMR or steroids!
Just to say, if you’re in west London, could you get a referral to Rheumatology at Chelsea and Westminster? At least they speak the language of PMR/GCA
Hi, I agree with the comments you've received. I'm no expert, but my rheumatologist is. Professor Graeme Jones, who has a world renowned reputation as a researcher and treatment provider. ramsayhealth.com.au/Special... Jones diagnosed me with both PMR and Fibromyalgia, lucky me to have them both! I don't have treatment for the Fibromyalgia, and have 1 x weekly injections of Actemra for PMR. Took about 8 months to taper off Pred after the Actemra kicked in.
I recently, under Prof's guidance, tried the reduce the frequency of injections. Crashed!
Hi again, just adding that Prof Jones said it's quite common to see people with both PMR and Fibromyalgia. He prescribed Lyrica 75mg capsules for the Fibromyalgia, to be taken as required. Apparently this medication works well for the pain associated with Fibromyalgia and PMR, however I'm not keen to take it and am managing without.
Interesting . Does he often see Fibro before PMR? I had very typical Fibro for 20 years , then overnight, pain changed dramatically in the 2 main PMR areas. Diagnosed within weeks by a Chiropractor. 20mg of prednisone changed that new severe pain within hours . My tests have always been normal tho. No doubt in my mind at all that I have PMR. I did have a flare about a year ago. Upping my pred to 10mgs once again took that pain away. I am at the stage now where the old type pain is now overwhelming me tho. I have another diagnosis of Ehlers Danlos which is maybe/possibly responsible for the pain . I will enquire about lyrica.
Ah! I was diagnosed with FM 14 years ago. Then suddenly developed sharp pain in ear and painful upper molar. Diagnosed with GCA 6 weeks ago. Did the FM "morph"? Currently on 30 Pred which has improved pain and stiffness somewhat. But my muscles are so weak and tired, and my walking is increasingly slow. Am really enjoying this site which I only discovered a week ago. So comforting to feel I'm not alone with this wretched condition!
Know it well - -born & bred in Hampshire … then spent a lot of time living in Wiltshire when hubby in Army., then on Wilts/Dorset border before moving further west. 😊
I had EDS all my life , although hilariously it was the condition that I got full confirmation of last!!!I've had Fibro because of the EDS for about 20 years , but again that was diagnosed after the GCA.
The EDS has caused me to develop many different health problems throughout my life and probably contributed to me developing GCA before 50.
I also have Chronic Migraine Syndrome and Cluster Headaches and IBS and Dysautonomia with P.O.T.S to name a few added thrills.
It's not uncommon to develop many conditions at once and early than usual with EDS or Hypermobility.
Knowing which pain is flaring when and which medication needs increasing becomes an art.
I have a combined low dose of three medications for the Neurological pain of Fibro. Pregabalin ( Lyrica) , Duloxetine and Paracetamol along with exercise and vitamin supplementation . Identifying your triggers and either avoiding them , or altering how you do certain things to reduce the effect that unavoidable triggers have is essential to reducing the flares. As is learning to pace yourself and reduce your stress. You do find you need to increase the medication for the Neurological pain as your dose of steroids reduces , especially in the Adrenal Phase ( under 5 mg) when your autonomic nervous system seems to go haywire about anything.
Hi, I'm seeing Prof Jones mid December and will ask if people typically present with Fibromyalgia or PMR first. I suspect in my case I could have had Fibromyalgia first but not severe and it wasn't diagnosed until I saw the Prof. I see a few people in this thread have said they had Fibromyalgia first.
Hi. I am sorry to hear that you are still suffering. I feel similar to you. Had pmr 2 years plus been off steroids since this May. Levels just a bit above normal but now getting pain and stiffness in neck, upper arms, lower arms, knees and hands. They HAD to get me off steroids despite still some pain so in May they ended now I’m left with constant pain I have to manage with co codamol. I am seeing rheumatologist again at some point but as I’m sure it is for you every day is an absolute struggle: dressing, getting in our car and sitting at a desk for 7 hrs plus a day. Feels like if you can’t be fixed or if you don’t respond ‘typically’ you get left.
I was diagnosed with Fibromyalgia for about 20 years before PMR fully hit overnight, in the 2 zones your Dr mentioned. I have been wondering if they are connected.
The Rheumatologist does seem to be jumping the gun with this decision.It is possible to develop Fibro while you have PMR or GCA, and also possible to have Fibro first and eventually develop PMR. It's not uncommon.
But doctors , especially Consultants, always seem to think it needs to be either / or, which really isn't true.
There are similarities but just as the medication for Fibro would not help PMR or GCA , steroids don't help the nerve pain of Fibromyalgia.
Both conditions need to be confirmed and treated with the right medication and self care at the same time if you end up having both.
Otherwise , you end up in a very nasty vicious circle of pain as a flare of PMR or GCA will trigger a flare of Fibromyalgia, and often vice versa.
If you have a Neurological pain condition like Fibro you can also find that rather than speeding up your taper of Steroids you usually need to go a little slower because of the way both conditions can impact on your body and slow down how well you recover in general.
Get a second opinion , be open to the idea that you may have unfortunately also developed Fibromyalgia or another Chronic nerve pain issue , but with that in mind talk with the new Rheumatologist about trialling medications for the nerve pain and being able to slow down your taper of Steroids whilst you get the Fibro under control . Otherwise, you are likely to end up triggering PMR flares again by putting your body under too much change and Stress and potentially undoing all of your hard work so far and needing to go right back up to the high doses again which is counterproductive and will inevitably leave you on steroids for longer in the end.
I was diagnosed with PMR following my first Covid vaccination in 2020. I was given prednisolone which gave me instant relief from the pain. It felt like magic but I did have quite a few unwanted side effects, like hardly being able to sleep at all and feeling incredibly alert all the time and unable to relax. There was no pain though, but as I reduced the Pred the pain came back. It has been quite a journey and to cut a long story short I have been on no medication at all since May, but am in debilitating pain all over! All my extensive blood test results were normal and I have now been diagnosed with Fibromyalgia. The leaflet I was given reads like a catch all list of everything one can experience in terms of pain and stiffness in the muscles and joints and a diagnosis that is given when they really don’t know what’s wrong with you!
I am going to try Amitriptyline again. It doesn’t give me a natural sleep but it doesn’t have the awful side effects of other drugs. Paracetamol does sometimes help the pain and I have been referred to a physiotherapist, but I’m not in the least hopeful.
They may have done tests - but did they try the crunch test: pred for a week or two. If that improves the pain, that is probably due to PMR, it has no effect at all on fibro.
Many doctors do not appear to understand PMR at all. It is not a one-off inflammation which is cured by a "course" of steroids. It is a chronic disorder with inflammation being created every day by an underlying autoimmune condition and is both autoimmune and autoinflammatory in nature. Pred cures nothing, it relieves the inflammation initially and then you taper or titrate the dose to find the lowest effective dose for ongoing management which is the amount that deals with the daily batch of inflammation.
If the dose of pred goes below that lowest effective dose - the inflammation builds up again until the symptoms reappear, You require a minimum dose of pred ongoing or the inflammation builds up - of course the pain returns if you relentlessly reduce the dose of pred.
Hi, I agree with you, the fibromyalgia diagnosis tends to suit medical experts when "they can't find much else wrong". 1 word of advice is be careful of a physiotherapist. I was referred to 1 by the rheumatologist and attended, did all the exercises faithfully and pains did nothing but increase. She told me that was normal and to persevere which I did. It got to the point it was so sore. In the end the physiotherapist agreed that exercises had/were aggravating my fibro and told me to stop. So just be aware there.
Think you need a second opinion. I’ve had Polymyalgia for 9 years in my neck upper arms hands and constantly have stiffness in both legs. Not had it affect my hips but almost everywhere else and I’m now on 3mg Pred which doesn’t help much but don’t want to go higher as trying to avoid diabetes. I’m also fatigued most of the time and constantly feel unwell. Just have to live with it but it certainly does get in the way of life.
Diabetes is not inevitable - have you been diagnosed as diabetic? I've been on pred for 14 years, no sign of diabetes, my Hba1c is 37. Koalajane reversed her diabetes while on pred - a low carb diet can achieve a lot and also helps the inflammation.
Further to PMRpro's comments, diabetes is not a given certainly not on lower doses.. albeit that you've been on pred a long time, but so has she. I had GCA so much higher doses, nary a sign of diabetes.
Certainly don't see the point of being on a dose that is too low to control your PMR and you don't have to live with it - when even a tiny increase might give you better QOL.
My GP and rheumie (by letter) decided that I did not have PMR and tried their best to ‘persuade’ me that I had fibromyalgia even although I did not have symptoms . I eventually had to see a private rheumatologist who was angry at the way I had been treated. He wrote to my GP saying that I had classic PMR and outlined a treatment plan. I’m now seeing another GP, albeit in the same practice, and she is very happy for me to self manage with regular reviews, blood tests and support. She has admitted that she’s actually learned from me and is happy for me to be on the DSNS taper. The private rheumatologist cost £200 and it was money well spent. I hope you get some help for the future. Best wishes.
I had fibro first, for about 12 years before PMR joined in! Both have their own distinct areas of problem in my case, & I can tell one from the other! My rheumy told me to come off pre at 1mg a month. & if I got sick just ‘tough it out’. I had a long appointment with my GP, & he is handling my fibro & PMR while I’m on the waiting list to see a different rheumy. I am not following that taper, but a much slower one, & currently on 2mg & holding, in consultation with my doctor as I’ve just been diagnosed with three other things, & have a lot of stress around me! However, my wait is to see a rheumy for probably Ehlers Danlos syndrome, not for PMR or fibromyalgia. Personally, I feel the handling of fibro & PMR is best handled at GP level, provided you have a good GP/doctor, of course. Good luck!
I have been 6 years with PMR. GP tried to rush me off Pred but gave up and let me manage myself. In 5.5 years I got to 0 pred with DL taper. I was free of pain for 4 weeks when stiffness and pain came back. I waited 6 weeks b4 seeing GP with a ?? flare. I was put back in 5mg Pred and all returned to normal. I have now tapered to 2.5 and feel OK. But don’t know if it will last. Has only been 2 days at 2.5. Fingers crossed.
But I would rather stay on a low dose and have QOL than suffer the pain and disability PMR causes. Good luck 😊
I had PMR which has 'triggered' Myositis. Apparently these autoimmune diseases can cross over. How or why I haven't been told. Long term steroid use is not good for you what anyone might say, in fact it could be why I then contracted Myositis. As for tapering Pred, .5mg a month is pretty standard & wouldn't want to go faster than that, sometimes slower, & when you get to 8mg that's when your adrenals will need to start up again so quite critical.
Of course ask for a second opinion, maybe worthwhile seeing someone privately for that.
Since myositis is by definition inflammation in muscles and corticosteroids are used to manage it, I find it difficult to believe that myositis developed due to pred! Myopathy maybe - but they are totally different things.
"As to steroid induced myositis it is an elephant in the room - it is not often discussed because as a side effect its occurrence is less common than the well known ones. along with all the well known issues, weight increase, diabetes, high cholesterol and osteoporosis, it can also induce Myositis. It was a whispered topic during my last neuromuscular consultation - lets get you off the steroids they could be adding to your issues due to chemical Myositis. It is not often discussed even though the leaflet included with them state 'muscle weakness' can occur"
I had exactly the same thing. Was told I had PMR was on 30 mil of steroid Year later was told I had fibyo & misdiagnosis & wanted me off steroid very quick . I done 15-5 in six months was so painful I'm now on 3.5 slow tapper. Been nightmare
Finally got to see a rheumy after two years here in US, been off pred eight months from GP who dx PMR in 2021 and said two yrs should do it per TX protocols, now given one month only of pred BY RHEUMY To stop PMR flare then no refills, will need to go back to celebrex. or maybe try. thc gummies , wonder if anyone has had luck with either in staving off flares and GCA. And what stops the waves of exhaustive fatigue, I need to get my wood shed filled with split logs before winter.
Yes this is happening to me after many years of on and off steroids , and up and down on the does. I have now been told this is now fibromyalgia. Sadly I don’t feel any better and the fatigue is dreadful. I have been offered amitrypaline but last time I used it didn’t help with the pain. I still have sore hips and shoulder, but as my ESR and CRP are normal I no longer qualify for steroid use. Still on 4.5 mgs . Not sure how I am going to do it .
Did/does the pain improve on enough pred? Yoyoing the dose is always asking for trouble because each time you go down and flare, it becomes harder to get it under control. And then they decide it is fibro ...
like yourself I have had PMR 15 yrs also 3 of which were undiagnosed. With 8 attempts to get off steroids . This latest attempt also failed with increased pain and fatigue . And As I was leaving for a holiday in 10 days I decided again to up the steroids up to 7 mgs . But after a week there was no change .so I returned to 4.5 mgs because before after a week of increased steroids I would be so so much better. Therefore when I explained at my rheumatology appointment it was agreed that it is now fibromyalgia. I will be reviewed in 6 mths with blood results . What about you are you still on steroids . ?
My rheumatologist recommends to go back to your last does . ?? But if I don’t know if it’s a flair, as my bloods are normal .or if I am just experiencing a rough time of fibromyalgia, as they suggest I now have . So my choice is to push on with reducing and feeling more weeks of rubbish. Is there any evidence that adding 5 mgs to someone suffering fibromyalgia will improve their symptoms of pain , fatigue and stiffness. is everything still a shot in the dark. How can I get myself sorted, after years of this yo yo . I just need it over . ! Thank you
Not if it IS fibro no, But we suspect doctors say it is fibro because they think pain doesn't come back with PMR - lord knows WHY, unless they totally misunderstand what PMR is, but we have heard doctors claim that if pain returns as you reduce pred it isn't PMR.
Just because the markers haven't changed doesn't mean it isn't a flare, they often lag behind and in some people don't rise if the patient is on any pred. And if there is a build up of inflammation, just going back to the last good dose without a bit of a springclean may not be enough.
Thank you again I was fortunate to be able to get a private cancellation appointment to see Prof Rod Hughes on Monday and he actually used your French Expression.
His opinion is that I still have PMR and have "typical reaction to an atypical steroid dosage regime" He also said that my Rheumatologist was being a bully
He said that I should stay where I am for at least 2more months before I adjust the dose, taking it at my own pace. I can now go back to my GP with medical back up and she will be happy to follow his advice.
I can see that some people may not Like Rod Hughes as he is very laid back and could come across as quite flippant, he didn't want to see GP Referral letter, with all my latest blood test results. He wanted to hear my PMR Journey from the start, he did take my Steroid dosage/pain diary that I have been keeping and was asking lots of questions as I explained what had happened. I felt he listened, understood, and was very reassuring. I feel much stronger in myself to carry on my PMR Journey.
That gave me a good laugh!!!! The man is practically horizontal he's so laid back - but I like that! He is a brilliant clinician - he works on the person and symptoms in front of him, not the numbers which should only be a supporting act in the background. But most doctors these days get it the other way round, and that is the wrong way. He can get things wrong - but he always admits it.
She is wrong! Try and get a 2nd opinion. I have never heard of PMR triggering fibromyalgia. I am always explaining that PMR is NOT fibromyalgia (even though the names sound a bit alike) and that PMR is detected through lab work and your rheumatologist's careful exam and questioning. Get that 2nd opinion!
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PMR or is this fibromyalgia?
PMR or Fibromyalgia?
First visit to rheumatologist, fibromyalgia confirmed as well as PMR!
PMR AND Fibromyalgia?!
