Arrrrgh! Guys, I am beside myself!

[Breconblue]

I was diagnosed definate PMR by ( locum) Cons Rheumatologist . Pred worked fine until I stopped after a year. All symptoms returned after a few weeks. GO referred me back to hospital , but restarted Pred. 7 months later different Rheum , disputed original diagnosis but didn’t say a lot at Clinic. I have just received copy of GP letter. In which he had written ‘ ? Inflammatory Osteoarthritis! Not PMR . I have looked up

The former . Not a single joint

Has ever hurt ! It’s all muscle pain! Plus, he says because I had wrist and finger pain first think in the morning it can’t be PMR as that only extends to elbows. So he said to come off

Pred and start Methotrexate .. I am beside myself . Not that I want PMR but because everything fits with it and I feel totally disempowered..

[Hidden]

You are having some week!

Hands are involved.... This flare I am currently having has been almost entirely in my hands and feet. I am sure someone will have more info.... Sit down and a cup of something. Its ALWAYS the weekend when you get these letters and you feel helpless and angry. 😠🌻

[HeronNS]

Is inflammatory arthrits another name for theumatoid arthritis? Do you have any of the symptoms for this because it isn't unheard of for people to be rediagnosed later. On the other hand prednisone is a perfectly good treatment for RA, at least to start, and maybe low dose pred is as safe as or even safer than mtx? Did he run the appropriate tests to make this query diagnosis?

[PMRpro Ambassador]

That's a fair selection of rubbish one way and another!

You can't have a "definite" diagnosis of PMR as there are no defined markers that are specific to it. However - let's assume that the balance of opinion pointed to PMR:

Of course all the pain returned when you stopped pred after a year: the median duration of management of PMR with pred is 5.9 years. Only 1 in 5 patients with PMR is able to stop pred after a year and they do tend to remain at a higher risk for relapse.

medpagetoday.org/rheumatolo...

Hands and feet ARE involved in PMR, especially in the form of RS3PE syndrome - and Leeds have done a study that appears to confirm that hands and feet are very much part of PMR. My PMR was in my hands and feet and loads of others have described the same sort of foot pain I had: felt as if we were walking on a mixture of sharp pebbles and broken glass in a pair of shoes that was a couple of sizes too small.

And since when is methotrexate used for inflammatory OSTEOarthritis? Are you sure that is what he said?

[Breconblue in reply to PMRpro]

Yes, the letter stated under “ Problems” ? Inflammatory Arthritis, underneath “Osteoarthritis “ and “ I think we need to look at an agent such as Methotrexate or Sulfasalazine given the possibility of an Inflammatory Arthritis “ . Should I get a third opinion ? In addition I have Embedded UTI so having to fork out for the only Consultant ( London) privately who is prepared to prescribe antibiotics long term 😱

[PMRpro Ambassador in reply to Breconblue]

Ah, right - he's like the rheumy I saw who was determined to make it inflammatory arthritis of some sort rather than PMR. Examples are rheumatoid arthritis, psoriatic arthritis and a few others. I think they think PMR is beneath them! Luckily I was about to move here and you can't have methotrexate or sulphasalazine without a consultant monitoring it. No-one here argues with the PMR diagnosis!

When you started on pred - did it work well? What dose was good?

[tangocharlie in reply to PMRpro]

My rheumy tried to tell me it was psoriatic arthritis even though I insisted I had none of the symptoms, then changed the diagnosis to ankelosing spondylitis (sp?) which also proved to be claptrap with an MRI. She said at 52 I was too young to have PMR ...... In my case rheumies have done me more harm than good and caused me so much stress. Thank goodness I've had this forum to turn to in darkest moments.

[PMRpro Ambassador in reply to tangocharlie]

I was just about to ask if it was the same one - no, mine was male. But the story was identical.

[Blearyeyed]

I would say at the least you should be given a follow up with the Rheumatologist whom has made this decision so that you can get them to qualify their decision , and you can question it before you agree to their Treatment Plan.

Contact the Department and speak to their Secretary to arrange this , or a phone appointment at the least , as soon as you can.

You only have to look at the people on this forum to know that , PMR, GCA, and OA or RA , is not an "either / or" situation. People can be diagnosed with two or more conditions at once and their Treatment is adapted to which conditions they suffer with.

If , after discussing things with this Rheumatologist they are still unwilling to consider PMR but you are sure from your previous experience that it is you may well need to ask for another opinion to get things resolved quickly .

I feel for you , ironically, it's often Doctors that give us more of the type of Stress that they tell us to reduce in our lives by their treatment than we get from anywhere else.

I just wish one day I can stop repeating the words , " There's nothing that makes you feel more ill than try to get well."

Keep us informed and hopefully getting support and the chance to vent on the forum will make getting this sorted out a bit easier for you.

Hugs xxx

[Nitrobunny]

I was Dx with PMR in 2004. Ten years later I had a new rheumatologist add the RA Dx after a particularly bad flare where I had swelling in my hands and feet. He X-rayed both and saw damage in both consistent with RA despite being negative for RA factor. The damage was not 10 years worth of damage and it was apparent to him I had both. I had a battle with GCA late 2015 to early 2016. I was able to take Actemra for 9 month before having a reaction to it but was able to make huge jumps in tapering prednisone. Since then, the PMR is more active than the RA. I’ve managed to keep the damage to my joints to a minimum. There is more to my autoimmune battle list that isn’t necessarily relevant to the point I’m making here which is yes, you can definitely have both. In my case I have several autoimmune issues.

[Gosingen]

Sorry to read your woes. I was contacted because I've been on MTX and asked for my experience. In a word, had to stop (injections) after a couple of weeks, totally dibilitating for me. so I'm afraid I can't really help you much. I'm particularly sensitive to many drugs, which makes life PMR/GCA a tad more complicated. All the best and I hope you get some proper answers soon.