I was diagnosed wth PMR at 62 by my original rheumy last winter, having all the hallmark symptoms for that condition: sudden onset, muscle/tendon/bursitis pain in arms and thighs, swelling in my hands and fingers but between the joints, not the joints themselves. The pain was quickly responsive to 20mg prednisone...considered a determining factor in differentiating PMR from RA and other auto-immune conditions.
My new rheumy (old one moved away) insists I have LORA and not PMR, but I have never in my life had a single pain or any swelling in any joint in my body unless I injured it. The new rheumy keeps pushing methotrixate, leufonomide and plaquenil, none of which does a thing for PMR, and wants me to reduce and suspend prednisone quickly. Prednisone is the only effective treatment for PMR.
I tried to taper the pred dose by 2.5 mg last spring, but had a serious flare that took 3 months to subside, so I returned to 20mg. I started tapering the pred again on a very slow plan in September, and am now down to 15mg with no increase in symptoms. I did develop the pred cheeks and hump and belly, but those, too, have decreaed as my dose has decreased.
No one wants to take pred, but I really don't want to take drugs for a condition I don't think I have.
Does anyone have any advice to offer?
Written by
GOOD_GRIEF
To view profiles and participate in discussions please or .
On what is her diagnoses based on? What do your bloods say? Do you have positive CCP? My RA started actually very much like what you are describing. Just tendinitis, bursitis and pain that magically disappeared with steroid injection. I was sure it was PMR but it wasn't. PMR goes away by itself if you are lucky. Don't really know what effect steroids have on the disease process.
Nothing changes the disease process of PMR. It is a self-limiting vasculitis of unknown origin that burns itself out - usually within 2-6 years of onset. Pred only reduces the inflammation and thus limits damage to the blood vessels and alleviates the pain and stiffness symptoms. But nothing has been found that changes the course of the disease. Untreated it can progress to Giant Cell Arteritis, effecting the larger structures of the circulatory system, and can cause blindness when lesions block the ocular artery. I had high ESR and CRP upon diagnosis, wnich were at or near normal by spring when I attempted the too-fast steroid taper. My last blooods showed both only slightly above normal, and the slower taper seems to be working. Like RA, blood tests for PMR are not determinative of the condition. Both can be present without any blood markers.
My body is telling me it has PMR. Since I have no joint pain or swelling, I am dubious of the RA diagnosis.
What I'm trying to discover is whether there are others who have been told they have RA but who do not have any joint pain or swelling.
Did a lot of research on the subject when in the similar situation in fact what I found out is that steroids do NOT alter the progression of the disease and do NOT protect you from GCA. Yes they help to cope with symptoms that's about all. And only if you get GCA only then high doeses of steroids is the treatment. I never went the steroid path, didn't have swollen joints and hoped it would be PMR. Still no swollen joints but quite evident that RA. At present quite well controlled with alternative treatment, no RA meds. I have no intention of suppressing my immune system that in my view on the contrary needs help to overcome a dysfunctional situation through making it stronger.
Thanks for writing and sorry to condtradict you, but untreated or inadequately treated PMR can, but does not always, progress to GCA, and even PMR sufferers who are adequately treated have a 15-20% chance of developing GCA, especially if they have multiple relapses while tapering pred, which is why slowly, slowly is the key.
You seem to have been one of the "lucky ones" to have a short course of disease. For most, active disease runs for 2-7 years, with some outliers at 10+ years after treatment begins. Retrospective studies have indicated that as with RA, remission is more likely when treatment begins aggressively and promptly and is sustained to avoid and react promptly to relapses.
Not so straight forward. Attached information on PMR does tell another story. " No treatment, corticoids included has shown to alter the disease progression" Yes steroids are the offered treatment since they effectively take away symptoms. However I am personally convinced that the use of steroids interferes with the natural healing process and in fact is one of the culprits for making PMR chronic. If managing pain and discomfort through nontoxic treatments is possible, I believe you give the body a better chance to overcome the disease.
I've never quite understood why response to steroids is seen a diagnostic of PMR, since it works wonders for RA too. It seems the other traits are far more useful, like muscle pain.
Anyway it is possible that steroid use is masking joint pain & swelling, so that isn't necessarily the decider either. Were you tested for RF and ant-CCP antibodies originally?
But personally I think I'd find another rheumatologist. You know your body, and if you feel this diagnosis is right then it probably is.
Beacuse PMR is a vasculitis, no NSAID or opioid pain reliever or any other pain reliever touches the pain. Pred clears the inflammation out of the circulatory system, and as long as you're taking enough to balance out the disease activity, you're virtually pain free most of the time. Pred mops up the accumulated inflammation, thereby reducing the symptoms.
I didn't have joint pain or swelling before I started pred, and I have not experienced any as I have tapered down.
What is Lora? Can people for everyones benefit use full medical terms not abbreviate, I worked for an American corporation on occupational health, nasty thing buzz words and abbreviations and accroyn use, think it is an an American thing??
I had PMR 12 years ago, I know how painful it is. My dr started me on 10 mg per day of prednisone . It worked very well. I cut back 1mg a month all the way down to a single dose of 1 mg. so in a years time I was free of PMR and prednisone. As you can see the reduction of prednisone was very slow. But the dose was half of what you are taking
Don't forget to take your bone minerals, calcium , magnesium ,boron, etc, as you know prednisone is very hard on your bones. Some dr prescribe only calcium. But your bones need all minerals.
Lucky for me I had a bone density scan a couple of years ago, was always athletic, and have a good strong skeleton. I take D3, calcium + D3, eat the rainbow of fresh fruits and veggies, at least one serving of dairy every day, as well as fish and fowl (and a nice steak once a week or so), and take a supplement that provides the MDR of everything else to cover any temporary shortfalls.
The current recommended starting doses for pred are up to 25mg, but 20mg was enough for me. Down to 15 mg now, a year in, mostly because the initial taper I attempted was too much too soon, leading to a bad flare that lasted all summer.
Well Lupus and Sjogren’s can both present very similarly to RA and also to PMR - but RA is the only one that causes joint erosion and the swelling and boggy quality of joints is usually recognisable as RA to most rheumatologists. It is unusual to have no swelling or heat emanating from joints if you have active RA.
This said I too was diagnosed with RA but was quite certain that I didn’t have it but that I had Sjögren’s or possibly Lupus or Vasculitis. I had to relocate twice, suffer various drug induced horror spells in hospital and agree to a lip biopsy before getting rediagnosed with Sjögren’s. Living with the wrong diagnosis is horrible. We know our bodies and learn about rheumatology accordingly. If you feel that this is PMR rather than RA then I would try your utmost to find a rheumatologist who will let you go back onto Prednisolone.
My friend has Addison’s and Sjögren’s and has to take steroids or she would die. So there are diseases that require steroids as the only treatment that can help and I believe PMR is in this category.
Thanks for writing back. I was tested for Lupus and Sjogrens twice at two diffrent labs with solidly negative results, and have no symptoms of either.
I'm still on pred, at 15mg now reduced from 20, and taking my time as I reduce further by 1mg or .5 mg per week depending on how I feel and how heavy or light my workdays are.
I wasn’t suggesting that you might have either Sjögren’s or Lupus.
But you asked if others have joint pain with no sign of swelling but with high inflammatory markers. So I just wanted agree that almost all other rheumatic diseases do apart from RA. I suffer most of all from tendinitis and small fibre neuropathy - both common with Sjögren’s and Lupus but also some arthropathy. No erosive changes or signs of inflammatory arthritis or specific antibodies but I do have high ANA, immunoglobulins and high systemic inflammation, PV and CRP.
Have you had MRI/ CT or ultrasound of your worse affected areas yet? If the inflammation is due to RA then this imaging would demonstrate signs of synovitis and perhaps early erosive changes.
Otherwise I really can’t see how they can tell you that you have seronegative RA rather than PMR or perhaps another kind of inflammatory arthritis (spondyloarthritis) such as Psoriatic Arthritis or Ankylosing Spondylitis - which usually don’t have swelling either and are usually seronegative
I've only had xrays of my chest, hands and feet, which show the usual level of wear and tear for an athletic 62 year old - a slight bunion on my left big toe (from an injury years and years ago), some heel spurs (probably from running), and a little in my upper spine above my shoulder blades (probably from compettive diving). None of these gave me any pain or even discomfort unless I really overdid it doing something physical for hours on end.
Another indicator that this is less likely to be RA then. But ultrasound or MRI would show synovial inflammation if you had active RA so more useful as imaging.
Hope tapering off Prednisolone doesn’t prove too traumatic for you 🤞🏽
Thanks for your time. As is said, slowly, slowly with weaning off pred. My goal is no flares as I reach the lowest possible dose to manage my inflammation until this thing burns itself out, or reveals itself as a different kind of dragon.
My hand and toe xrays showed “demineralization” (I understand to be a kind of osteopenia) which my rheumi said is classic RA...yet she still vascillates between sero negative Ra and psoriatic arthritis...ahhh! I wish I knew definitively, easier for me as both are pretty much treated the same unlike you case. I can understand it’s nerve wracking.
I've been six years trying to get diagnosed, docs thought I had GCA or Temperal Arteritis, they did a biopsy which came back neg but still treated me with high dose of steroids for a year. No joint pain, but had a positive RA factor in my blood, that threw them, kept asking if I'm goin to get joint pain, but they cudnt tell me. Next year I had pneumonitis, again over a year on steroids, keep getting pneumonia as well. My illness seems to attack my organs until recently, now I have the joint pain, have been given dmards, have high resolution scans yearly as my breathing not good. Now rheumy says I have Mixed Connective Tissue disease because I have loads of different symtoms that overlap, my eyes are so dry and are stuck every morning. I never know what is round the corner and what organ it's going to affect, so I hate to say it, mine didn't start with joint pain, enjoy it while you can. Take care x
Important to remember that autoimmune conditions is a kind of “over drive” of the immune system where it goes crazy snd starts attacking...it is not an under active immune system...it seems to go rogue for whatever reason. Needs to be slowed down not built up. AND anything we can do to eat a fantastic diet, excercise, rest etc is all essential too. I personally wish I had the discipline to juice for a year like Clint paddison did, but I don’t .🙁
My mother lived like a saint, was into wholistic
Eating years before it was in vogue, didn’t drink, was active and still got GCA. My mother, brother and I (I have four and refuse to count higher) all have autoimmune conditions. It’s all complex isn’t it.
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.
In pain w/o swelling am I crazy? Is it possible?
RA symptoms or possible Lupos
How do you tell the difference between the pain from RA joint damage and the pain from RA being active/having a flare?
RA and then no RA. Is this really possible?
