PMR becomes RA

[jennyjournalist]

I suffered from polymyalgia for two years and with no improvement and continuing high inflammation levels the diagnosis changed to rehumatoid arthritis. I wondered if anyone else had exeprienced this? The rheumatologist is now going through the process of trying to find the right treatment and am currently taking methatrexate but it is not having the results hoped for so expect to be put another drug next visit!

[PMRpro Ambassador]

LORA (late onset RA) and PMR can present looking absolutely identical and there is no way to distinguish between them at the outset although some of the features of your response to moderate dose pred at the start may be signposts to dig deeper.

However - your comment "with no improvement and continuing high inflammation levels" makes me prick my ears up. It took TWO years to come to that conclusion? Did you have a good response to pred originally? Were the symptoms relieved at least 70% within a couple of weeks?

If 15mg isn't enough to achieve a decent response then up to 25mg should be trialed. If the inflammatory markers don't fall it is a good sign the dose isn't high enough. But once the higher doses have been tried, it shouldn't take 2 years to work it out that it may not be PMR.

[jinasc]

I would just like to say, that Methotextrate is known as the gold standard treatment for RA according to the Rheumy Nurse. I would be following the advice given by PMRpro and ensure you ask the questions.

[Redrupert]

My diagnosis is polymyagic onset RA, after 4 years of PMR. Currently down to 3.5mg pred, tapering down from 30mg at the outset. Initially had a really positive response to the pred. I knew something was changing though, when the pain etc started to appear in the wrists, hands, feet, ankles and elbows (as opposed to shoulders, hips and knees courtesy of pmr). Been on methotrexate for about 4 months, mixed results. PMRpro's advice as sound as ever.

[Pixix]

Yes, looking that way! My doctor feels ‘we’ are getting nowhere with treatment of PMR & thinks I may have RA instead…but I’ve gained other diseases in past few years & could be ‘as well as’. Sadly, though, despite marking my referral urgent it will be 11 months before I can see a rheumatologist at the hospital, so, in the meantime, I’m slowly reducing again from 10mg (had to go up from 3mg in order to gain help from pred.) With other diseases already confirmed it’s sometimes hard to know what pain is coming from which disease!! Mine has also been two years…but two years of the pandemic, & trying not to bother the doctor if I didn’t have to…but I have had a lot of treatment for osteoarthritis during those two years…that came along in the middle of the pandemic!!

[AliDeJ in reply to Pixix]

Hi Pixie...treatment for Osteoarthritis? What type of treatment, may I ask? I need help with mine but thought that nothing can be done. Thanks.

[Pixix in reply to AliDeJ]

Injections of cortisone for shoulders, referral to podiatrist for arthritis in toes, custom built orthotics made to take the weight off toes when I walk, for thumbs & wrists I was referred to another specialist, who fitted me with thumb splints & compression gloves, & also splints to wear at night (though they are mainly for carpal tunnel problems I have), & exercises to do daily to help hands/wrists. Nothing can be done for my OA in pelvic region, as it’s not in a replaceable bone, like the hips are. Also, the muscles that attach to my hips at the side are growing bone on them (ossification), which adds to the issues. I was offered hydrotherapy, but can’t use the hospital pool due to chlorine allergy! For the pain I take time release tranadol. Waiting to see a new rheumatologist who specialises in sports injuries, & has a different medical background (but that’s to help determine if I have hypermobility, rheumatoid arthritis, & sero negative spondylitis, as well as a few other things (after hour long ‘top to toe’ examination by my local doctor), hope this answers your query?! There’s a forum for arthritis on health unlocked,too….just FYI!

[AliDeJ in reply to Pixix]

Thank you. I hope you get the help you need.

[DorsetLady PMRGCAuk volunteer in reply to AliDeJ]

This site gives info on all things OA -versusarthritis.org/about-a...

[AliDeJ in reply to DorsetLady]

Of course! Thank you.

[Pixix in reply to AliDeJ]

That’s the site I belong to!

[Viv54]

Almost the same thing happened to me, i was given Methathatrexate , it made me really ill had to give it up , horrible side affects . Now back on Amitrpyline, i was dubious at first but have to say its helped me a lot. Hope this helps.

[tangocharlie]

They changed the diagnosis just because you still had it after 2 years?! Give me strength. Did the steroids work? Perhaps you were on a lower dose than you needed if you were reducing regularly to a fixed schedule rather than to symptoms? I was in that position, was down to 5mg of Pred for years which was too low. I just assumed doctors knew what they were doing and trusted them to give me teh right treatment but in hindsight they didn't.