I'm gathering information, please share your story if you're a long-timer, say over about 6 years with PMR.
I've had PMR for 10 years now and it shows no signs of going away. I know this is fairly rare and for most people the average time to have PMR is just under 6 years and shorter than that for many people, but that means some people must be above the average. I know from other discussions there are some of us in the same boat and I'd like to gather information to discuss with my rheumatologist, maybe get our rheumatolgists to talk to each other. We could enlighten those who say PMR just burns itself out after 2 years
PMRpro suzy1959 Longtimer
The following info would be useful and anything else relevant you can think of:
Age when diagnosed
How you were diagnosed
How long you’ve had PMR now
What dose of Pred on now
Have you tried any DMARDs?
How has your PMR journey been? Have you encountered any problems?
Do you see a rheumatologist?
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tangocharlie
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Age when diagnosed 56 (just before my birthday!) but symptoms had been present since age 51
How you were diagnosed - own research identified what fitted, GP referred me, consultant was reluctant, thought it was inflammatory arthritis, but pred was a miracle for 6 weeks - all symptoms returned in same time frame they had gone when I stopped pred and a different GP agreed it was PMR
How long you’ve had PMR now: 18 years
What dose of Pred on now; 7mg (only because of Actemra, was previously at 15-20mg)
Have you tried any DMARDs?: methotrexate, for 4 weeks, it just made me so ill I couldn't function.
How has your PMR journey been? Have you encountered any problems? - how long have you got?????
Do you see a rheumatologist? - yes, a top name in the field and he is using Actemra because he can.
Age when diagnosed I was dx in 2012 aged 51, but it took a GP nearly a year to recognise it so was 50 when it started - and menopausal, I wonder if that is a link. It followed on from frozen shoulders and bursitis in hips.
How you were diagnosed? GP
How long you’ve had PMR now? 10 years
What dose of Pred on now? 22-22.5
How has your PMR journey been? Have you encountered any problems? A very bumpy ride not helped by ignorance from rheumatologists in the mid-years
Do you see a rheumatologist? Yes have a very good one now, but even she is a bit stumped
Started on 10 pred which worked fairly well but then was rapidly reduced by 1 a month which with hindsight was too fast and too soon but I assumed the dr knew what he was doing. Stuck on 5 for years and couldn't get below and still in pain and crippled. After 3 years asked to be referred to a rheumatolgist who said it couldn't be PMR because I was too young and it would have gone away by now anyway if it was PMR, instead told it was fibromyalgia and to stop the steroids and take gabapentin. Flabbergasted luckily I found this forum, got a new rheumie and pushed on for a new diagnosis. Unfortunately the new one also thought I was too young and said it must be something else like psoriatic arthritis or ankelosing spondylitis which to me didn't match the description of what I'd got. I pushed on and eventually PMR was confirmed by PET CT scan. I came off steroids in 2017 because I was told the PMR MUST have gone away, but it hadn't and all flared up again with a vengeance, and adrenal problems to boot. Then tried steroid injections for about 18 months but the rheumie got it all wrong, said I could only have them every 6 months which was totally wrong, they only last about 3 weeks. Led to more adrenal problems and being very ill again. I'd just got stabilised and things were going well but then then I was forced to reduce the dose and everything flared up again, I was really very ill. Now back on oral Pred.
It's been a very bumpy journey battling not only the disease but the doctors who I thought would help me. Luckily I have a very good rheumie now, Dr Mackie. Frequent flares and I'm on a high dose of Pred 22.5 and finding it impossible to reduce. I'm convinced given past experience this is due to the disease severity rather than withdrawal pains. My inflammation had never been under control at low doses but has goen down to normal at higher doses. Have tried Leflunomide, Sulphasalazine, Methotrexate twice, none did anything and I couldn't tolerate the mtx, and now Hydroxychloraquine which I've only taken for 3 months so don't know yet if it's doing anything.
Got it at 52 in 2012. GP said I was too young. first Rheumy said it was my posture! Second Rheumy said he didn’t know what I had so threw all sorts of pills my way luckily including Pred. Third Rheumy ( Prof. Dasgupta) said he was sure I didn’t have it but then it was confirmed in 2014 by PET scan.
So I have now had it 10 years and 9 months.
Currently on 19mgs after a huge flare where I went up to 22.5 from 11mgs which has been my usual dose barring flares. Never got below 8.5 and always have flared from there.
I have tried methotrexate, Leflunamide and Mycophenelate. None have had any impact and Leflunamide sent my BP rocketing.
I have flares at the drop of a hat! Anytime I am stressed, unwell or reducing. My CRP has only ever been in the normal range once. Recently been in the 30’s.During this time I have also developed osteoarthritis and rapidly needed 4 joint replacements. My Rheumy thinks I have fibromyalgia, largely because I have pains all over and have insomnia. The insomnia has been the dominant feature this year.
My Rheumy is Rod Hughes. I am having phone consultations at the moment and nothing much is happening.
Very smilar stories! I've tried to explain to my rheumie that it doesn't take much to cause a flare: for example the cold, going on holiday, getting another illness or injury or a stressful event. I feel I'm on the bare minimum dose atm, and think it might actually be a tad too low as CRP is still in the high teens. I'm going to have another go at explaining it at the next meeting. Rheumatolgists just assume PMR is on a downward trend needing a reducing dose, but that isn't the case for some of us. I'm having a big flare now afer a week away in Italy, and the lack of sleep doesn't help either. I wish there was a way out of this rut
The GP’s mum had pmr, so diagnosis was instant. ESR and CRP both raised
Took pred for seven years and nine months. Went to zero 1st October 2022, and still ok. Not counting my chickens!
DMARDS. No, never
Problems. Took over three weeks at 30mg to get going. Thereafter, the dreaded fatigue, about which I was not warned, has been the worst side effect. No weight gain, but cut out carbs very early. Really, just a very slow but steady taper aided enormously by this Forum. Took about a year getting from 10mg to 9mg, but no real flares. Got to zero twice in preceding twelve months, but the pmr was not ready to let go! It’s fingers crossed this time.
Rheumatologist. No, never saw one. I’m lucky to have an excellent General Practice.
Age 60 diagnosed by GP sent to a very useless Rheumatologist, said I would be off pred in 2 years and to take lowest dose Vitd! Went back after few weeks, carry on , don’t ask any questions. Then proceeded to manage myself for few years. Asked to be referred again, he was worse than the first. Very arrogant told to follow a fast tapering plan, had to get to 5 mg in few weeks, went back in pain, told, if in pain it’s not PMR.
Waited few year again asked to be referred to Dr Max Yates, had read about him at UEA. So different from previous Rheumies, his mantra is communication…..so refreshing to be able to ask and discuss things! My main problem has always been fatigue, I tried MTX no difference. Eventually he suggested getting to 6mg (I think) and have a scan, it showed no inflammation, so was presumed from then that it was adrenals that was the problem. Very low readings first two tests, now have had ACHT test result in the 300’s, have had numerous blood tests.
Still have deathly fatigue, big struggle. Hopefully one day the adrenals will get the message and I can get out there!
Thanks, so how many years have you had it? You, like me, not fitting in the box of pre-conceived textbook theories of PMR have had a very hard time. My GP also said it would just burn itself out in 2 years
I've had pmr 7 years at age 54 but had it for 1 yr before diagnosed. My GP diagnosed me after about 6 months. He had me off for 3 mos sick leave and it just got to the point the pain was debilitating.
Getting in to him due to summer holidays was brutal but when I did he diagnosed and referred me asap to rhumitologist.
His big mistake was giving me oxicontant vs prednisone.
I was relieved to get diagnosed but furious he didn't give me prednisone but ended up in the hospital and they prescribed prednisone.
I was back in his office days later to increase the dosage and he admitted he should have given me prednisone but was hoping I'd last to rhumitologist.
My 1st rhumitologist was crap but I did my thing until recently when she screamed at me several times that I could be dead in 24hrs.
I now see an endocrinologist because I'm in adrenal insufficiency for at least 1 yr but officially diagnosed 7 mos ago.
I have a new rhumitologist who I've caught in 2 lies so he doesn't impress me much.
I'm presenting on .5mg and Endicronologist wants me at zero by January but I've been stabilizing for past 3mos. I wake up with aches in my legs so not rushing.
I went on CBD about 5.5 yrs ago and it helped tremendously with prednisone side-effects as well allowed me to drop better.
Been fortunate that I've never yo-yod but running exhausted and my sleep is worse than on high doses. Can't plan anything before 12.
Diagnosed 2016 at nearly 70, started at 15mg pred, got down to 5 the first year, then 3, then 2, never experiencing the magic improvement some of you do (bit jealous, actually) but had stiffness, balance issues, fatigue etc rather than real pain. My GP said as neither pred nor pain is good, it's up to me to find an acceptable balance. Just had my first flare, largely in arms and hands after my 5th covid jab (could be coincidence), but went up to 6 and feel so much better. Also realize that pred has been helping as PMR pain is worse than stiffness. I was going to return to 3 quickly, but it's cold out, Christmas is coming and I know I can reduce slowly later. I am very susceptible to air pressure- good days coincide with high pressure weather and I even get a few days warning when rain is coming.
And yes, this was supposed to last 2 years, so it's challenging as it drags on, but I'm learning it's ok to cut corners and that endurance itself has value.
It is so helpful to have everyone's anecdotes, as we may have different versions of this, but also many similarities. It is reassuring to see others' ways of coping. Sympathy to you all...
Age when diagnosed, 68 but I think I had it for a couple of years misdiagnosed. My GP apologised! I had several episodes of severe fatigue, had shoulder surgery, injections in hip, steroids for Costochondritis several times. Ultrasound technicians both remarked how much inflammation I had. Sometimes I think that there are briefer prodromal episodes before a severe flare.
How you were diagnosed: a new GP did blood tests and diagnosed me from symptoms and high ESR and CRP. How long you’ve had PMR : at least seven years.
What dose of Pred on now: Just gone back to 20 because of a relapse at 10 doing DSNS. Suspected GCA but ultrasound clear. I have got down to 5 twice then relapsed.
Have you tried any DMARDs? For the first time my rheumatologist is suggesting them. It’s a real worry to me because I have abnormal liver function tests. He prescribed Azathioprine but a blood test showed I shouldn’t take it. Now he has prescribed Leflunomide, which has strong warnings about liver side effects.
How has your PMR journey been? Have you encountered any problems?My journey has been a roller coaster and still is. The first two years I was fine, very good response to pred. I felt so good and normal. I got all the side effects, moon face, fat stomach, weight gain but I felt well and ignored it, enjoyed my life and holidays again. Travelled to the USA three times a year to see my children and reduced to 3 mg. Then a bomb dropped. My beautiful 38 year old daughter was diagnosed with third stage breast cancer. She had an 8 year old and and 16 year old autistic son. I immediately left and went for her chemo and mastectomy. It was difficult because I have DDD and osteoarthritis but I coped. She is doing well now but it took four years of surgeries and a 12 hour microsurgery to repair her broken down chest wall from radiotherapy. When I got back my PMR came back with a vengeance and has never recovered. COVID happened so I couldn’t help her if I was able. Sorry for such a long answer but I think it mirrors a lot of us where unavoidable stress is involved. Sometimes life just picks us up and throws us into these situations. I now have steroid induced DM2, cataracts and glaucoma.
Do you see a rheumatologist?I was referred right at the start because my blood tests were all over the place. He has been less than dynamic to say the least. Has the same old mantra of get off pred, take bone protection, see you in a year. He has paid attention to my GCA symptoms and is good at doing scans to make sure my high CRP isn’t caused by something else, butme when the US is clear. I don’t have a lot of faith in him. Thanks for reading if you have. This group is so helpful and important to me, keeping me hopeful.
How you were diagnosed - tests, discussion of symptoms, and I think my new doctor's visual assessment of how I walked
How long you’ve had PMR now - 8 years (or maybe longer when I think back on some symptoms I had attributed to osteoarthritis but now not so sure, now that PMR is controlled and those symptoms also gone, although OA very much present and active)
What dose of Pred on now - 2 mg
Have you tried any DMARDs? - no
How has your PMR journey been? Have you encountered any problems? - took over a year, and a new doctor, to get a diagnosis. First couple of years very easy, especially as I had control over my dose and tapering. Unfortunately when I got to 2 my doctor didn't renew my prescription but told me to use up my tablets, stop and see what happens. I had just enough tablets to taper without pause by DSNS to zero, but unfortunately I wasn't ready to taper lower than 2. Flare, Ended up back at 3 for a while, and very slowly back to 2 or 2.5. In 2019-20 I tapered to zero, taking 3 months for each .5 mg drop, always using DSNS. Within six weeks of zero I was back on pred as pain just kept getting worse, no sign of readjusting as I believe would have been the case with pred withdrawal. For about six months I was okay at about 2-3 then had a major flare which took another year to get sorted, and now I'm back at 2 and feeling good, PMRwise, but also feeling infinitely older! Fortunately, apart from that misguided advice a few years ago, my doctors since diagnosis have been sensible. It may be noteworthy that when I flared so spectacularly in early 2021 - this time from increased disease activity, not as before from low dose - my CRP was allegedly highest it's ever been but last couple of tests (last one about six months ago) it's been the lowest, finally in low single digits which it had never been before. So I haven't given up hope that another taper, beginning when winter lets up, may be successful, or at least get me back to 1 mg where I was for a while in mid 2020
What age? I was 48 although numerous rheumy's have said it could not be because I was too young.
Who diagnosed? Doctor diagnosed me because of raised ESR and CPR (apparently dr. is still in trouble with rheumy as they believe I should not be on steroids as my ESR and CPR was low by the time I saw the first one... yes because the steriods were working!)
How long? It was 6 years in November but it started April that year so a little longer than that.
What dose now? 7.5mg ( I am now using methotrexate and Baricitinib to help reduce the dose and combat pain I started to have in my wrists at lower doses. It currently seems to be working)
Have you tried DMARD's? Yes methotrexate but only started working when put on Baricitnibib. Not sure if Baricitinibib would work on its own though...
Any problems? Was put on Humura in 2018 which seemed to be working but unfortunately, it stopped working in 2019. I have been a serial yoyoer after repeated attempts to reduce. I seem to be currently stable ( I am saying this very quietly!) I have had many ups and downs and these are documented in my profile. If you want more it is all written there 😊
Did you see a Rheumatologist? Yes, I have now seen 3. The first one was too far to travel to the second was rubbish and the third has taken time to warm to me because she thought I was a serial changer who wasn't happy with the answers I got. She is beginning to work with me now so hopefully, I'm past that.
I was diagnosed eventually at the age of 64. Over the previous 5-10 yrs I had bouts of muscle weakness and stiffness put down to post viral issues.
Diagnosis by an enlightened locum GP who also knew about NE forum. Confirmed by rheumatologist 10+ yrs ago
Never tried DMARDS. Crawling to 3.5 mg.
Initially on 15mg but advice before I found the forum (locum GP no longer at surgery) was to reduce rapidly. Disastrous. Many flares and I long had the belief I could work my way through it. Equally disastrous. Much better since I embraced the go slow approach but not without moments of feeling dire.
Current GP fairly happy to let me be judge of situation but doesn't give adrenal aspect much attention. It was a shock to me to realise getting down on pred had it's disadvantages!
I really dread to think where I would be without the opportunity to learn from the NE forum and now this one.
Diagnosed in hospital in Spain after losing sight in left eye. GCA diagnosed followed by PMR a few weeks later.
12 years
Was on 7 until 1 April when I had a pe and A&E raised it to 20. Now trying to reduce. 20 mg 5 days. 19 2 days.
Not tried DMARDs.
I was coping very well until 5 years ago when I was diagnosed with Polycythemia Vera and put on a chemo based drug. PMR? Returned. Or is it side effects of PV and Interferon? Haematologist said no!!
I only see a Rheumatologist privately if needed. Twice in last 3 years.
I have continued to exercise, walking and cycling. Only gentle but I'm sure it's helped mentally and physically.
I was diagnosed in January 2012 aged 53 so 11 year anniversary coming up.
My father had PMR so I knew the syptoms & also the complication of GCA. As my GP ignored my head pain I referred myself back to an opthalmic consultant who I had seen for cataracts & he referred me straight away to a wonderful general consultant who I have seen ever since.
Current dose 22.5mg due to a recent bad flare of both pmr & gca following Covid booster. Usually able to function quite well around 7.5 /8mg
Good eye doctor! Mine was much better informed about both pred and GCA (which was not my diagnosis, I was concerned about possible increased ocular pressure which indeed I had) than my GP, although she was good with PMR.
Hello tangocharlie, lot of similarities in my story as I read others, I was diagnosed in Oct 2016 by my GP, only from symptons, was not sent for bloodwork at that appt, he immediately prescribed 40 mgs pred, then referred me to rheumy with a couple of weeks, she then started bloodwork, and a tapering plan, by this time my markers crp etc were not showing elevation, as pred was working Im assuming, Continued to taper very slowly, but through the first few years, had several very stressful family events, one family got into addiction in a big way, lost home etc, grandaughter involved with addict, nightmare, then another son diagnosed with cancer in 2017 , had stem cell transplant 2018, then just this last May same son, diagnosed with leukemia, ended up having bone marrow transplant in Sept this year, so all of that has , according to the rheumy I had , affected my PMR and had to taper very slowly. However in fall of 2020 I was getting annoyed with my previous rheumy, as her comments on last in person visit, was, "no more PMr, old age and arthritis", at that time believe I was down to 6 mgs or so, so at the first of this year 2022 decided enough , and found new rheumy., he suggested trying to continue taper in March, which had been on 5 mgs for almost 2 yrs, got down to 4mgs about 3 mos ago, now about a week ago, new symptons, which seem like GCA, had bloodwork done, and yes, for the first time in yrs, inflammation markers were raised, he as of yesterday, prescribed increase to 25 mgs per day, and sending me for ultrasound for "temporal arteritis" possible, very discouraging after so many years, but have to say , for last year , even in 2021 near end of year on 5 mgs, wasnt feeling very good, lots of soreness, muscles, joints, shoulders, just all over body complaints, but exrays etc showed osteoarthritis , in back , hip, etc, been so long, Im getting very tired and some days very depressed, anyway that,s my story, many more details left out, too much type and read Im sure,
I know this is depressing but hopefully it won't take years to get back down to a lower dose this time. From experience I know that OA pain and PMR can be confusing to separate, especially when OA is affected areas also prime target of PMR - in my case shoulders and neck. A dose of 25 mg is likely to help OA as well as PMR, so enjoy the relief! When I had my major flare a couple of years ago initially I thought it was OA, but my CRP skyrocketed (for me) and an increased dose of pred was quite miraculous. Hope you are now feeling a bit better.
well just took my first 25 mgs this morning, had to combine some 1 mgs, and had couple 5 mgs from long ago script., so don,t know what to expect time wise before my head stops hurting, and of course all the other niggles I have, getting ultrasound done for temporal ateritis on Monday which is quick but wondering if 3- 4 days of 25 mgs will affect results of ultrasound, but am guessing nothing else rheumy could have suggested to be on safe side, at this point
Age when diagnosed. Good question. I am 67 now and have had PMR symptoms for at least 20 years. So, somewhere between age 45 and 47. I believe my illness was triggered by trauma.
How you were diagnosed. By accident. After years of doctors, symptoms, misdiagnosis, I was diagnosed during a visit to the ER, by an ER doctor. I was there because of chest pain, which was caused by costochronditis.
How long you’ve had PMR now, I have had PMR for at least 20 years, GCA over 10, with GCA being verified at Mayo Clinic in 2017.
What dose of Pred on now 5mg. prednisone, with monthly infusion of Actemra.
Have you tried any DMARDs? placquenil, could not take, methotrexate, caused intestinal blockage.
How has your PMR journey been? Have you encountered any problems? Seriously!. The last 20 years have made me the most patient person. Symptom after symptom, way too much time being forced to become my own advocate, when I should have been focusing on family and life. Challenged with issue after issue after issue. Doctors do not have all of the answers. PMR/GCA affects every part of our body, digestion, fatigue, pain, and it carries it's own form of depression. Ups and down, and don't get me started on the personal demon that is prednisone. Talk about a rock and a hard place.
Do you see a rheumatologist? I saw one rheumatologist who had been drinking, he slammed my medical records violently on his desk when I said I could not take placquenil, and I left his office in tears.
One rheumatologist from our local university told me I did not have PMR/GCA. I needed to see a psychiatrist. I had slipped on the ice on the way into his office. My knee was swelling and bleeding. He showed no concern, rushed out of the office as if I was being rude by taking his valuable time. One of his interns took pity on me and asked for an x-ray for my knee. I later learned his score on the internet is 1.
One rheumatologist put me on methotrexate, which caused an intestinal blockage. She also said she did not think I had PMR/GCA.
One rheumatologist was in his 80s, should have retired years ago, and once kept me waiting in his waiting room for four hours.
One rheumatologist said I did not have PMR, or GCA. he did vitamin IV cocktails, which cost a lot of money.
One rheumatologist read the biopsy report from my temporal biopsy, and since the guy who wrote the report, wrote it in ambiguous language, he said I did not have PMR/GCA and would need to see a psychiatrist.
The head rheumatologist at the Mayo Clinic asked for my original biopsy. He said I had marked histiocytes on my cell walls and I had undertreated GCA.
My current rheumatologist has me on 5mg. prednisone for life, and Actemra. He is one of the good ones.
OMG. You could write an article about the horrors of rheumatologists. So glad your quest appears, finally, to have ended successfully. I hope your current dosage is enough to keep you feeling reasonably well. Has the Actemra been good?
Age when diagnosed: It was 2011 and I was 52yrs old
How you were diagnosed: GP messed around for 3 months, no dx, I finally pushed hard for a Rheumie referral and was diagnosed within 10 minutes based on symptoms. He was awesome, but retired 4 years later. Markers were high.
How long you’ve had PMR now: 11 years, added GCA in 2017.
What dose of Pred on now: zero. Started Actemra in 2019, tapered to zero over 1 1/2 years. Came off Actemra in fall 2021, then 3 months later, inflammatory markers high, PMR pain back and mild GCA symptoms. After short burst of Pred, went right back on Actemra. Currently every other week injections.
Have you tried any DMARDs? Plaquinil about 5 years into it. Couldn’t tell if it was helping, but when I stopped it ended up with GCA (so maybe it was helping!). Never had side effects from it.
How has your PMR journey been? Hills and valleys! Through the awesome advice on this site was able to minimize most Pred side effects.
Have you encountered any problems? Been very lucky to have good Rheumies. Also being in US able to be on Actemra long term. It’s been a godsend!
Do you see a rheumatologist? Yep, first one was awesome! Second was trainable and we have a good partnership with decision making. I figure I’m a “lifer”…
Was diagnosed by my gp , and as my mother (and possibly her mother) had it and gca so I was more aware and saw a rheumatologist privately because the waiting list on the Nhs was too long. He started me on steroid injections and they weren’t really successful because the pain came back after about 10 days. So I reluctantly took oral pred and I’m now tapering from 4.5 to 4
I seem to have had more success from using Mrs Nails slow taper than anything else I’ve tried.
I am on 10 mg methotrexate and have been taking it for a few years now.
I see a rheumatologist every 6 months. He is very understanding and never rushes me. Over the 10 years I have had this I have seen some very condescending and arrogant rheumatologists. So hoping this one sticks around.
I am keeping my fingers crossed that I may be able to taper to 2mgs and he said he’d be quite happy if I stayed on that dose indefinitely.
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