I was diagnosed with Pmr a year ago but my Dr always thought I had something else going on. I have had x rays done that the results came back as showing no signs of arthritis in my hands or neck.I have seen a few rheumies. The last but one said that as my blood tests showed no RA and my x rays were normal I must have Seronegative arthritis. I had a mistake extra rheumy appointment and he looked at my x rays and said that yes I had signs of arthritis in both my hands and neck.I was started on Hydroxychloroquine about seven weeks ago and so far they do not seem to be working.
My question is does anyone have any symptoms like mine and what are you being treated with and for?
I have pains some days in my shoulders. Some days I wake up and my hands feel normal but within a little while of moving about they start aching and throbbing like toothache. My wrists can be very bruised feeling and at times very weak. I have trouble squeezing playdough with my grandson on some days. Where ever I look at symptoms of arthritis or seronegative arthritis I do not see any similarities to my symptoms.I wonder if I am misdiagnosed.
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Bailybiscuit
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I have had similar pains and problems with PMR but these are really fairly common arthritic pains. There is sometimes a stage of inflammatory arthritis where the pains move from joint to joint: one day an elbow may hurt and then it improves, a few weeks later a knee hurts for a few days and so on, episodes all over the body. Sometimes the pain appears out of nowhere and disappears very quickly, sometimes it hangs around for days before fading again. It isn't regular, it isn't always bilateral though it can be. It has recently been shown in a study that hands and feet are involved in PMR - but some doctors didn't think they were.
In some ways the one side/both sides is a primary difference from PMR - PMR is much more often both sides of your body being affected at the same time, though not always equally. PMR pain and stiffness tends to be in the morning (or as we keep pointing out, all day) and then improve as we get moving - it is unusual for a patient to get up in the morning feeling OK and then the pain develop later. And while PMR may be worse some days than others it really is present all the time which yours sounds not to be unless I'm misunderstanding what you say. Some sorts of arthritis can be identical to PMR in the early stages which is why 1 in 6 or so of patients told they have PMR at first later have their diagnosis changed, usually to an arthritis of some sort.
Often when patients with ?PMR start of 15mg of pred they only have a very small improvement in their symptoms and that can be an indication that it isn't PMR after all - or at least, the PMR we talk about which is more accurately "pred-responsive PMR". PMR is a name for a clinical picture of certain symptoms that are due to an underlying cause - in our case it is an autoimmune disorder affecting blood vessels and reducing the blood flow to muscles because of the inflammation it causes. Pred reduces the inflammation, the blood flow gets back to normal and so the pain and stiffness are improved. In other sorts of arthritis the cause isn't the blood flow so the pred doesn't have the same effect, another drug is needed.
Hydroxychloroquine usually takes at least 2 months to start to work, it may take 6 months for the maximum effect - much the same as for many of the DMARDs. Often rheumies allow 6 months before deciding a medication isn't working and deciding to try another - they start with the ones with the fewest side effects for obvious reasons. As with PMR, every patient's arthritis is different and which medication is the right one varies.
Thank you for your reply, you have explained better than anyone , seeing as no one has really explained anything. I forgot to say when I was diagnosed with pmr I responded within hours of taking steroids and was pain free when I saw my Dr a few days later. I always had a neck pain that she thought wasn't pmr. I was also told after a while that I had Atypical pmr as I was better in the morning, although to start with my hips were stiff in the morning. My shoulders were always worse in the evening. Why do none of the information I have read on arthritis mention the throbbing pains which are not related to a particular joint?
Maybe you just found the wrong ones - it was a friend who has RA that told me some of these things. I think patients experience things rather differently to the way the textbooks see them! And it is possible your throbbing hands are due to something else - but mine used to ache something rotten and when I had had to use them it was awful. I couldn't shake hands with someone.
That response sounds very PMR-ish. The neck pain could be something else - it was for me. Mine was a combination of myofascial pain syndrome affecting my shoulders and a wisdom tooth that was erupting at an angle further and further without an opposing tooth and ended up affecting my bite. Even a slight jaw problem can put immense strain on the shoulder and neck muscles. Having the tooth out cured my neck pain - honestly, it was as stark as that!
What a daft term "atypical PMR" is - everyone I know is slightly different in the way their PMR manifests. Does that make us all "atypical"? I've come across patients whose rheumys tell them they are "atypical" but overall they sound just like most of us! Your shoulders probably hurt more in the evening because you'd been using your arms all day while your hips stiffened during the night. We have had to explain to doctors that yes, we are stiff in the morning when we first get up but we can be stiff at any time of the day.
When I first started having PMR symptoms, my neck pain escalated very quickly. An X-ray showed the curve in my neck was being pulled straight by the spasms. I was still not on steroids, and about 1 month later the pain in my neck escalated to a pain score of 9/10, it turned out the spasms had caused me to slip a disc in my neck. So not everything we suffer is PMR. Also last year I had a period of severe hand pain, resulting in tears when I tried to do certain tasks. An expert in PMR/GCA informed me she has done studies which prove PMR affects the hands, and suggested increasing Pred slightly, it worked. Yet my local Rheumy said it couldn't be connected to my PMR and was ? Rheumatoid arthritis. My hands have been fine since. Keep pushing for answers, and when they give you a diagnosis you are wuite within your rights to ask for the rationale to that, good luck.
The problem is I was doing so well until I got to about 12mg steroids and the I just kept flaring up. My rheumy and Dr just keep saying I must come down with the steroids and I have to admit even on 20mg I do not feel as good as I did on 15mg to begin with. First my rheumy said whether I have pmr or arthritis the treatment is the same. He also said steroids are not pain killers but as I see it if they are reducing inflammation they are then reducing pain. The other problem is how long we go before seeing a consultant again and not always see the same one. I see a chiropractor and he has been treating my neck which helps a lot.
"whether I have pmr or arthritis the treatment is the same" - not exactly. The ONLY thing that works for PMR is pred, it is a defining point if you want to be fussy about things. Inflammatory arthritis responds to DMARDs, depending on which it is and PMR doesn't.
It also depends how you define painkiller - no, it isn't a painkiller in the normal sense but pred provides all the pain relief in PMR by relieving the muscular inflammation.
If you are struggling even at 15mg and above then they should possibly consider another diagnosis - but if they want you to reduce the pred they must find another answer. They won't let you stay at above 12.5mg for a long time because of the risks and it is hint that maybe it isn't PMR. Or plain and simple they made you reduce in too large steps.
Poor you Angela. You are having a tough ride. I had Pmr for 2 years, happily reducing right down to 2 mgs effortlessly and then got GCA and back up to 60mgs. This second time my hands were involved just like yours whereas they had been fine before. I'm not recommending anything - just empathising with you. Today I am fine on 8mgs after 4 years! We just have to hang on in there and believe it will get better :). Xx
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