I wonder if anyone else has been diagnosed as having "polymyalgic onset rheumatoid arthritis?" That is my ? Diagnosis. I have quite severe osteoarthritis in my wrists and fingers. On scanning no rheumatoid signs were detected. I was originally diagnosed with PMR and have now been on pred for two years. Only 5mg now hoping to reduce to 4 soon. I was referred to a rheumatologist because I couldn't reduce my steroids without the pain returning in the initial stages. Have been tried on both methotrexate and hydrochloroquine. Neither made any difference excepting for making me feel ill and causing digestive problems. I don't believe I have rheumatoid arthritis. No rheumatoid factor has been seen in my blood. Only raised ESR and CRP and both are completely steroid sensitive. Any thoughts on this unusual diagnosis? Even my GP had never heard of it. She thinks that I have PMR and osteoarthritis but not RA. Thanks for listening.
PMR and Ra: I wonder if anyone else has been... - PMRGCAuk
PMR and Ra
Yes I have! My journey began in May 2014 with a diagnosis of pmr. Like most of you all I struggled up and down the prednisolone path until May 2016 when my rheumy did wrist ultrasound. Although my bloods were negative for RA, ultrasound showed inflammation in both wrists. This caused her to change the diagnosis to RA.
Since then I have been on all the DMARDs with either no success or really bad side effects. I am about to start Benepali. Over the last year my joints have progressively worsened and nodules have begun to appear on fingers and wrists. The pain is mostly in my hands, wrists and shoulders - although sometimes my hips and knees join the party
To cap it all, having got to 4mg Pred I discovered my adrenal glands were not working! Adrenal crisis is not something I ever want to experience again! So back up the Pred path for me
Pmr and RA are just words. Does it matter as long as it is treated and the pain goes away?
I was interested in your post, I have been on Pred for 17 years, GCA/PMR but mostly for GCA to cut a long story, I have just reduced my Pred on the slow method to 6 mgs was on that dose for 3 months then had an adrenal test, I was told my adrenals are not working and I am now waiting to see an Endo, in the meantime I have upped my dose to 7.5 and feel slightly better especially with the lethargy, although still very tired, amongst other symptoms, You mentioned an Adrenal crisis which I'm worried about, and hope the 7.5 mgs of Pred will prevent me having a crisis,? I hope I don't have too much of a wait to see the Endo.
I am also having upper and low back pain, and in the shoulders, stiffness in the arms and legs, and awful pains in both thumb joints and some fingers, I'm having difficulty holding things, and not too good trying to get hot food from the oven.
When I was told I had adrenal failure I wasn't told what to do other than still take the pred, and I would be referred to an Endo, When I had the test I was surprised I wasn't contacted as soon as the hospital Dr. received the results, but I didn't know until I saw him 6 weeks after.
IF i had a crisis should I take more pred before I got help ? it's very worrying.
thanks bowler
You should be OK on 7.5mg because that is a typical starting dose and is what is called a "physiological dose", about the amount the body would produce daily - polkadotcom knows far more from experience than I do and she was started on 5mg but I think has now had the dose increased. To me that suggests there was a bit of residual adrenal function which has faded further.
If you start to feel ill that you think could be an adrenal crisis the best thing to do is call 999 and tell them the problem. The paramedics carry injections for use in a crisis: tablets take up to a couple of hours to work and if you have lost consciousness in the meantime you can't tell them. If the way you feel deteriorates slowly - your GP should be able to sort it out though the simplest thing is to try a slightly higher dose.
Thank you PMRpro, that's encouraging to know that I should be OK on 7.5 I remember you saying that 7.5 is what the body would produce. I was just worried that maybe I could still have a crisis, Thinking about it, I suppose if I was that bad and I wasn't on steroids then perhaps the hospital would have contacted me,? Since being on 7.5 it is a lot better than the 6mgs I was taking, but not perfect, I will see how I go and up the dose slightly if I have to.
thank you
I won't gloss over it, I think you could have one if you were under tremendous stress, an accident or operation or something. That's why it is so important to have a card saying you have been on long term pred anyway. And now - maybe a MedicAlert bracelet might be worth considering, just in case.
And yes - if you hadn't been on pred it would have been a different matter and you might well have been admitted. But if you had tried to force the dose lower you would soon have known about it with next to no adrenal function.
I am going to look into buying a MedicAlert bracelet.
The Rheumy who I saw last year whom I will next be seeing him/her in May, will have expected me to be off Pred by then and they were going to discharge me, saying my symptoms were not GCA /PMR anymore but stress, I have the letter to prove this, If they had given me an adrenal test years ago I may not be in this situation ? no wonder every time they said to reduce my Pred and when I got to a low dose I had all the symptoms of adrenal insufficiency, which was like GCA/PMR headaches, aches and pains etc.,etc., even a raised ESR CRP, so it was a case of up the pred and start again.
My gastro Dr, who organised theses tests has written to Rheumatology and my Dr. so maybe Rheumatology will discharge me anyway and I will be in the hands of an Endo,
Oh well what's done is done.
It could be both of course - no adrenal function AND bit of PMR still hanging around. Can't think of any reason why the ESR would rise for adrenal problems - must have a look.
Someone was sent for an endo appointment and was sent home with a sneering "I really can't see why you've been sent to me - adrenal function ALWAYS returns."
I know at least 2 people just on the forums for whom it hasn't - which in my book is a significant incidence. I think anyone who struggles to reduce below 5mg should have a test done. Saves messing about telling the patient they MUST reduce and leaving them feeling unwell at best.
How long is it since the being unable to get below 5mg started? You've been messing around for ages haven't you?
It's been at least 8 years since being unable to get below 5mgs.
Even the Gastro Dr. was surprised about results of the adrenal test, I think he thought I would be able to get off them, then when I reached 6mgs and he sent me for another test. When I saw him about this latest test, his first words were "you will never be able to come off steroids, I'm going to get your Dr. to refer you to and Endo"
Hi Bowler, I now have a diagnosis of adrenal insufficiency and will be on Pred for the rest of my life. I did stay at 5mg for 3 years and everything was fine until I got well into my 4th year when it all went pear-shaped so was eventually put up to 7.5mg. I see my Rheumy next week (I've been on 7.5mg since April last year) so will find out what the next game plan is.
However, as is the problem with us long-timers, so much water has gone under the bridge - I've had a hip replacement and a knee replacement since the diagnosis together with several more minor problems. I am also 'mystifying' my GP by my continued borderline anaemia, so having a first appointment with the vasculitis team week after next so heaven only knows what this year will bring. I have now got into a comfort mode of saying 'whatever' to everything!
Thank you for your reply.
The Gasto Dr. who set up these test for me, said when i saw him 2 weeks ago "that I will be on Pred for the rest of my life," however I have yet to see the Endo. but I assume I will get the same info. The symptoms I have seem to point that way [ adrenal insufficiency ] and the puzzle is fitting into place, it's just a pity that Rheumatology didn't give me an adrenal test sooner, instead of it "going round the houses" so to speak. I don't know if I will be in the hands of an Endo, or will still be seen by Rheumatology ?
I have over the years accumulated several ailments, hypertension, stage 3 kidney disease, gall stones, Bowen's disease [ on the face ] hiatus hernia, diverticula, and irritable bowel. But I would say I can't blame all of these on long term Pred. as many people can have them without ever taking steroids. I have also been borderline low on vitamin B12
It isn't an uncommon label, I've seen it several times - it probably means that they thought you had RA but with a muscle aches presentation rather than joint problems being the first symptom. There are rheumies who won't have it that it could be RA if only muscles are affected. Or they maybe decided that although there was no joint erosion it couldn't be PMR if the hands and feet were affected (wrong, Leeds has shown it as have other groups).
RA, PMR and lupus can all present looking pretty much identical and it is the differential diagnosis that is the problem. In fact, PMR could be the start of a load of different things - as you can see in the "Differential diagnosis" bit of this link:
patient.info/doctor/polymya...
I'll bet if you hadn't bothered with the rheumy and just stuck with your GP and used the dead slow reduction approach you'd have been fine with "just" a PMR diagnosis! Some rheumies just won't accept PMR for some reason...
Thank you for that. My feelings precisely. I wish I had never seen the rheumatologist. Thank you too for the link. Very useful.
You don't have to go back you know. I didn't when he didn't want to listen to my reports of the effect of pred in just a few hours and insisted I needed to go on sulphasalazine. I was about to move to Italy (you have to avoid the sun) and no other doctor has ever suggested anything other than PMR, albeit in a rather protracted form...
I think we all try hard to comply with what a doctor suggests. Rheumatologist is suggesting sulphasalazine even although there is no concrete sign of RA. The scan on my hands and wrists showed only extensive OA. My GP is convinced I have PMR. I may well see my GP and explain that I don't want to go back. Thank you for your support.
There is a very specific test for RA.. Its called Vectra Test... it's just a blood test but a very thorough one for detecting RA in patients that don't show RA in any of the routine tests... mine had to be done at the hospital.... Quest labs and others don't do it for some reason.
My rheumy suspected RA but no tests could confirm it until the Vectra test was done and it came back a high positive making easier for her to treat me... I also have PMR and GCA... we tried Methotrexate and it made me sick after a couple of months and I am now on Orencia Infusions and they seem to be working ... my inflammation levels were always very erratic but seem to be staying down now which will hopefully help me get off the Prednisone. I am down to 6mg now. I had to do 6mg one day and 7mg the next for a few weeks before I could stay on 6mg...I may have to do 6mg one day and 5mg the next to stabilize on 5mg. This method of reducing has worked for me so far as its more like 1/2 mg reduction at a time.... by the time my body decides 6mg isn't enough I take 7mg and would be okay and so on... worked very well for me.
That's good to know because at the moment I am taking 6 mg one day and 5mg the next. I hadn't heard of that blood test but have made a note to ask my doctor if I could have it to rule one way or the other. Thank you for that. Much appreciated.
According to Lene Andersen at HealthCentral it is NOT for diagnosis:
healthcentral.com/rheumatoi...
where she says:
"Vectra DA is a newer blood test developed by Crescendo Bioscience. It is used in people who have already been diagnosed with RA to assess their level of disease activity. It is not used as part of diagnosing RA. Certain medications, infections, or surgical procedures may affect your score. Tell your doctor if you’ve been sick or had a vaccination before getting the Vectra test." ... "Certain medications, infections, or surgical procedures may affect your score."
and the company's own website also says "Vectra DA has not been validated or studied for diagnosing RA. It has not been studied for use in predicting which specific therapy or class of therapy will work for you."
It is for monitoring disease activity, not diagnosing RA in the first place. Of course, that doesn't stop doctors deciding that if it shows high activity it is due to RA.
As far as I can find out, it is also only available in the USA at present - at a cost of $1,000. That was the status a year ago - but I can't find anything to suggest that has changed.
That's true... however if your Dr suspects RA and you have the test it is verified by your scores... if you do not have it your score will also show that.. my score was through the roof which verified it was in fact RA & it is being treated accordingly. My rheumatologist is very smart & compassionate ... takes a lot time explaining things to you and specializes in PMR/GCA as well... which sadly enough many Drs don't seem to believe it's even a disease.
Yes, I have too. the diagnosis was based on elevated CRP and ESR with seronegative RA I was diagnosed with PMR in January of 2020 Put on 20 mg of Prednisone and and sent to a Rheumatologist. My Rheumy ran the Vectra DA testing which returned a score of 75. My rheumy told me I had RA and put me on Methotrexate while trying to taper the prednisone down to 7.5. I was never able to get below 10 and had horrible side effects. In august I was taken off the Methotrexate and placed on Sulfasalazine 500mg. I take 4 a day and have gotten down the Prednisone to 7mg a day. I have pain in my shoulders that has never gone away, but has increased as I taper off the prednisone. My current blood work shows normal crp, esr, still seronegative for RA and my Vectra score is now 50. I do not think the sulfasalazine is doing anything. It was a last ditch effort before I start on an injectable. My taper off the prednisone was 2.5 mg every two weeks until I got to 10. Every Time I tried to go from 10 to 7.5 I had a massive flair and had to go back to 10mg. I tried that twice and then asked my Rheumy if I could lower 1mg at a time. He wrote me a new prescription and I've been reducing 1mg at a time. Based on pain levels, I think I'm going to be stuck at 7 for a while.
Just wondered if you realised this thread is over 4 years old?
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