I am 51 and was diagnosed at Mayo in January, after two years of multiple orthopedic docs, two spine surgeons, two pain clinics, various injections, a local rheumatologist who told me to get on with life (a female, surprisingly), an internist who wanted to send me to a month-long mental camp, and a boss with little empathy.
I started with 15mg prednisone daily in January and started scaling it back 1 mg a month, but accelerated scaling back toward the end. Steroids worked great initially, and then they didn't. The pain is the worst in my glutes and hamstrings, especially during and after sitting, which, of course, I need to do for work. I have tried five different office chairs, cushions galore, and still hurt. I have had three PT's.
My doctor just put me on Imuran, which helps some, but not enough. My glutes hurt constantly, and hamstrings hurt a great deal after sitting for just 15 minutes. I was a healthy, physically strong person four years ago. This thing seemed to come out of the blue, not long after a hysterectomy. Now I see my quads shrinking and I can't take a road trip to visit family. I went to the lake in early spring (I like to fish) and enjoyed just standing in the ice cold water. Any thoughts, suggestions are welcome. This has been significantly life changing. I am hoping there will be an end. Please tell me there will be.
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Rooney07
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Hi, well done for sharing such a comprehensive personal appraisal. I too am new to this site and whilst I have some experience of the symptoms you are and have suffered, my journey is taking me on a different route.
This blog is unique. These diseases manifest themselves in many ways and from my reading of posts, suggests that all of us have tangible if subtle, differences in presentation, therefore you and your illness are unique, yet you are not alone.
You will find that you will receive responses from members who manifest remarkably similar symptoms to what you manifest, or ones like me, across the Atlantic, who is wide awake at 4:00 a.m with one of the side effects of taking high dose prednisone.
You will receive support, advice and answers to any question you wish to ask. However diverse the question, ask it, you will get an answer.
Were you affected by yesterday afternoon deluge? My son tried to drive through Wimborne after a long & trying journey back from work (London) to pick grandchildren up from me - said it was carnage - cars all over the place flooded - went the very pretty but long route home!
Water was coming off the roof over front door like a waterfall! Good job it was short lived.
No thankfully I wasn’t. I had a lie down yesterday afternoon and witnessed the storm though - find it helps my condition to rest more as sleep is still an issue. We own the land with bridleway adjacent to the place which you visit regularly and the damage to the surface today was very evident. At least a 10cm deep gully, fully a metre across travelling 200 metres: a 100 or so being our drive now on the road.
Wimborne flooded in several streets as was Leigh Road I believe. We have a couple of branches down and masses of twigs. Apart from the odd clap of thunder, I would have been pretty much unaware if I hadn’t seen it as with 40cm of thatched roof over my head, I wouldn’t have heard a thing.
Hi there and welcome to this site. I am sorry to hear of the problems you have had and are still having. As Theoldch has said, there are many in your or a similar position to you, with many of us being up in the early hours of the morning due to steroid use. However, to me, that and other side effects are a small price to pay for the alleviation of the symptoms and pain. I won't try and offer advice from my limited experience of PMR as there are far more knowledgeable people than me who will shortly be in touch to offer you support, advice and help. Take care, stay safe and try and stay strong, not always easy I know. Peter
4th week of steroids, you are so right. Side effects for us GCA sufferers are legion, but relatively pain free, stable vision and safe for now. Life is good!
“I started with 15mg prednisone daily in January and started scaling it back 1 mg a month, but accelerated scaling back toward the end. Steroids worked great initially, and then they didn't”
Does that mean you are now off the steroids? If so, it’s doesn’t mean they weren’t working as you decreased, it means you weren’t taking the correct dose that your illness needs.
You are not taking a short term dose, you may need steroids for anything from 2-6 years depending on how long your illness lasts...and you are reducing (scaling back) to find the lowest dose that gives you the same relief as initial dose did....not relentlessly reducing to zero.
Have a look at this - it might help you understand your illness and the treatment of it better - healthunlocked.com/pmrgcauk...
Yes, I am no longer taking the steroids but from what I'm hearing here, maybe that is not the right path. I told my doctor that I didn't think the steroids were doing much and he prescribed Imuran. I don't know that he's 100% sure that I have PMR. I have a slight RF factor and HLA B27 positive. My symptoms suggest PMR but there are some things that are not typical. If I could get rid of the pain when sitting I would be so happy. I can live with Nick and shoulder pain and hand pain. But the pain in my glutes and hamstrings is really problematic. This has been going on for 3 years now. I also have no tolerance for high heat. I don't know if that is typical or not. But I live in Georgia, so that's an issue. I'm glad I found this site because it's nice to be able to talk to people who have been experiencing similar things.
Other than age (which is not a reason, but many doctors think it is) why is he not sure you have PMR? Just because you don’t have all the symptoms doesn’t mean you don’t have it. Most of us on here would say the initial success with Pred proves otherwise. However the fast reduction then nullified that success.
Unfortunately many doctor are used to prescribing steroids on a short term basis for various illnesses - and if they don’t understand the niceties of PMR (ie - it lasts a long time and is not cured, but controlled until it goes into remission of its own volition) they taper patients in the wrong way.
Has he suggested you be referred to a Rheumy? Or what tests has he done/doing?
You may be able to cope with the pain, but if it is PMR, then the inflammation being released every day may be doing more damage to your body than either he or you realise.
Not sure the intolerance to heat is a factor (other may have different views) - but you certainly do need further investigation. Living in constant pain is very debilitating, and it shouldn’t be happening.
I have been off steroids since June after being on them for 5 years to treat GCA. In the past month I have been in excruciating hip/knee pain. Slightly better today after starting on amitriptyline. Doc. and physio suggest sciatica. How does the pain of PMR compare to sciatica ? I would welcome any thoughts on this.
Thank you Dorset Lady, The pain is mainly down my left leg with occasional tingling in lower leg. Sometimes bilateral, which I’m told can still indicate sciatica. As you say amitriptyline wouldn’t fix PMR so good news on that score.
The tests at Mayo didn't show any elevated sedimentation or other indicators of inflammation. But I had been taking Humira, prescribed by a rheumatologist in Georgia (who didn't know what was going on with me) so maybe that's why. I don't know. The Mayo doc seems to believe that with time, the hallmarks of a particular disease will show itself. In the meantime, it could be PMR. I definitely have enthesitis and gastro issues, as well as the pain in glutes and posterior thighs, made much worse by sitting.
If you are taking Humira your blood inflammatory markers will be suppressed plus the fact that not everybody gets raised markers with PMR or GCA, even with no other drugs to affect it.
Yes, I have very similar symptoms and am HLA B27 positive, so my consultant is querying axial spondyloarthropy /inflammatory arthritis. I am waiting for the MRI results.
Yes, I did. I had a full spinal MRI, a pelvic scan and sacroiliac joints. I have pain just about everywhere!! But my main pain is neck, shoulders, pelvis, lumbar region, buttocks and thighs..... Will let you know what the results are when I finally get them!!
Sorry to hear you’ve had a rocky road to diagnosis which is sadly more common than it should be, especially for the ‘younger’ ones. I suspect the reason you are struggling so is that you’ve reduced the Pred far too fast. Can you describe what you mean by the Pred helping initially and when it stopped? What doses were you on?
"I started with 15mg prednisone daily in January and started scaling it back 1 mg a month, but accelerated scaling back toward the end. Steroids worked great initially, and then they didn't. "
Pred isn't a cure for PMR and you don't take it for a short course and stop. PMR is a chronic autoimmune disorder that leads to the immune system being unable to recognise your body as self and so it attacks the tissues causing inflammation which is what causes the symptoms of pain and stiffness. PMR lasts from under a year for 1 in 5 patients to many years for about half - the median duration of management with pred is 5.9 years. Not 6 months. You are taking pred to manage the inflammation and allow a better quality of life in the meantime until the underlying autoimmune disorder burns out and goes into remission - which it does for at least half of patients within 6 years and even later for others. It is unusual in that once it goes into remission it isn't very likely to recur although that is also possible for a small number of patients.
So for you, pred worked well initially simply because you were taking enough - and you should have reduced slowly to find the lowest dose that provided the same result to use over a longer time. Often that is higher in the early stages of PMR and patients are able to reduce further over time, many eventually are able to reduce right dow to zero without a return of symptoms. Once you had reduced past that dose there was always some excess inflammation: it is being created every day in the early morning and the pred combats it provided you take enough. Once the inflammation isn't being fully combatted it builds up again to take you back to where you were pre-pred and you will have symptoms again.
Corticosteroids - prednisone, prednisolone and methyl prednisolone - are the mainstay of management of PMR. Imuran or azathioprine does NOT work to manage PMR - it may, for a few patients, help to reduce the dose of pred required but it does not replace the steroids. Azathioprine is used in rheumatoid arthritis and some other forms of inflammatory arthritis. PMR is not an arthritis - it is a vasculitis. Only steroids are approved worldwide for the management of PMR - in the USA they may use tocilizumab/Actemra if the insurance will cover it but even there pred is used and
You say you were diagnosed at the Mayo clinic - was the taper of pred and replacement with azathioprine also initiated by the Mayo or by your local doctor? The return of symptoms wasn't because steroids didn't work - it is beause they aren't being used properly.
The end at present will be achieved by taking enough pred - most of us live a good life that way. Eventually you may get off pred - but it won't be by taking the wrong medication for the condition now. And unmanaged PMR is thought to be more likely to progress to GCA, giant cell arteritis, which requires a much higher dose of pred to manage to avoid the risk of irreversible partial or total loss of vision. It isn't a case of being in pain and too stiff to enjoy life.
I think I will send a note through the portal asking the doctor to renew my prednisone prescription. It sounds like I was overly determined to get off prednisone. I met with an endocrinologist earlier this year and she didn't like that I was on it long-term. That may have influenced my decision to scale it back swiftly. The blood results with her office came back that I was low T. Same results with the gyno. So I took testosterone cream for a couple of months but it didn't help with sore glutes and hamstrings so I stopped taking it.
I failed to mention that I had a total hip replacement in 2018 because of all this pain, at least in part. I did have a moderately degenerated hip, which I assumed was causing all the pain. Two weeks after surgery, it became clear it had not been the complete solution.
This has been an odyssey.
Lumbar spine appears okay. I've had two spine surgeons look at my MRIs. I do have some bulging at L3-4 and L4-5, but nothing warrants surgery, they say.
I had another funny thing happen earlier this year- I got trigger finger in my right thumb. I had a steroid shot in it but it came back and I had to have surgery. Not a big deal, but interesting, because I wondered if there was a correlation with the PMR.
It's like after the hysterectomy in 2017, everything went to hell in a handbasket.
Thanks for listening and I appreciated you thorough response to my post. I've read it a couple of times.
I'm sure the endocrinologist didn't like you being on long term pred - no doctor would unless there was a good medical reason for it. Unfortunately, the primary medication for PMR and GCA is one of the medium acting corticosteroids, prednisolone, prednisone or methyl prednisolone. There is also tocilizumab/Actemra, a biologic which does seem to achieve remission of the autoimmune process fairly quickly and so reduces the dose of pred required though it is not yet known how long the remission lasts. It is used in the USA for PMR but not anywhere else, it is used for GCA. Like all biologics, it is expensive - IRO $17K for a year so getting approval from your fundholder may be difficult - and if every PMR patient were to get it then in any funding model it would become unaffordable. Only half of GCA patients are able to get off pred entirely - some continue to require a lower dose of pred to manage inflammation due to other causes besides IL-6 which what tocilizumab targets. For some patients using methotrexate as well as pred may lead to a lower dose of pred being required but nothing entirely replaces pred - especially if you develop GCA where you will require high dose pred, at least for a time, to reduce the risk of irreversible visual loss.
You are very knowledgeable about this. I hadn't considered it as a vasculitis. That makes sense, given that my muscles seem to be sore all the time. I told my orthopedic doctor that everything south of my navel hurts and when he didn't know what to do with me, I broke down in tears in his office. I went to so many doctors in Georgia and not one suggested PMR. This has made me aware of how poor our healthcare system really is here. Is there a medication in addition to the steroids that helps people with PMR? Methotrexate?
I get concerned about taking these medications during the Covid 19 crisis. I have read that outcomes are not good for people with autoimmune diseases who get it. It's a scary world we live in right now.
Not to mention that the standard treatment for PMR is corticosteroids - which are also being used in Covid. Personally I'd be less enthusiastic about methotrexate at present ...
Before I was diagnosed I had trouble sitting, it felt as if I were sitting on stones. I even got a new cushion for my easy chair and discovered the new one made no difference! The pred seemed to cure the problem.
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