I might have been wrongly diagnosed

[Hiibilly]

Hi I saw a rheumatologist for the first time since I was diagnosed with PMR in Feb this year. I have had telephone appointments but saw a real human today. I had an MRI in September which showed inflammation in my left hip. I had my right hip replaced ten years ago but that was a birth defect. Today I was told after almost twelve months on prednisone that I might have been wrongly diagnosed and that I might have rheumatiod arthritis. My sister has had RA all her life and I have mentioned this at every consultation GP and specialist. What would your advice be and what have other people experienced.

[PMRpro Ambassador]

LORA (late onset RA) can present looking identical to PMR and joint erosion may never appear, if it does it may be a lot later than the first onset of symptoms. There is absolutely no 100% accurate way of differentiating between them at the start - papers have been written about it! RA can be sero-negative, that means all the associated blood markers are not present. One sign may be requiring a higher than usual dose of pred to get symptoms under control and later difficulty in reducing the dose without a return of symptoms.

It hasn't been unknown for RA to be managed with pred, so in that sense it isn't that bad - but it doesn't prevent the joint erosion which DMARDs such as methotrexate should.

[Hiibilly in reply to PMRpro]

Thank you that makes sense and reading other posts do some people go on Methotrexate for both as we discussed that option? He was excellent as it happens and talked me through various options. It is just reassuring it talk to people who have the experience to explain things. I appreciate it even more as it is so close to Christmas bless you.

[PMRpro Ambassador in reply to Hiibilly]

In some cases methotrexate can let you manage on a lower dose of pred - maybe it potentiates the pred effect, maybe it works on part of some people's illness, not really known. Some people just don't get on with it.

[Hiibilly in reply to PMRpro]

Thank you, I will do some research and get so when I see him in the new year. These might explain why I have been in so much pain. I hope you have a good Christmas and thanks again.

[Coffeebeans]

I'm in a similar position Hiibilly for those reasons that PMRPRO has explained.

I'm having an MRI tomorrow morning after a taper down to 5mg pred so will hopefully have a better idea after Christmas. Can't come quick enough. I'm in pain!

As I understand it, it can be difficult to differentiate between PMR and RA especially as RA can have a polymyalgic presentation. Methotrexate has been mentioned for me but the New Year will tell.

Good luck with the next appointment

[Hiibilly in reply to Coffeebeans]

Thanks for your reply it gives great comfort to hear that there are people out there that understand, although I wish with all my heart that no one had to suffer this type of pain. I have had some prity low days when the pain and fatigue are so bad you don't feel you have any fight left but all people on this site just give you a bit of boost. Thank you and best wishes for Christmas and New year

[Coffeebeans in reply to Hiibilly]

Oh yes, there are those days when it's all too much. Give yourself permission to rest up in those days. tomorrow is another day 😊

[Mollbhan]

Like you an initial diagnosis of PMR was changed to RA and I was put on 20mg MTX weekly and reduced myself to 7mg pred daily. Control is reasonable with that medication though I still get some pretty bad days. I have not had any side effects from the MTX but it was about 12 weeks before I really saw much benefit. Keep smiling, it helps.

[Hiibilly in reply to Mollbhan]

Thanks for that at least I can go back to see the rheumatologist have some idea what others find helpful. I have been on Methotrexate before for a horrible skin condition called nodular prurigo. I hope you have a good Christmas and flare free

[visionatsea]

Diagnosed with PMR and took prednisone for 18 mths. Diagnosis then changed to sero-negative RA and started on methotrexate (tapering to o mg prednisone). Currently on max dose (for RA) with objective of reducing over next few mths. Have taken prednisone concurrently to reduce flare initiated inflammation. Current rheumatologist not sure if diagnosis of RA is correct or if just PMR or some combination of PMR/RA. He has said that methotrexate doesn't work as well for PMR as it does for RA.

[Hiibilly in reply to visionatsea]

The rheumatologist I saw did mention that it could be a combination or in fact another rheumatic condition but the deteration of my left hip was very symilar to RA. No doubt I will be finding out more when I see him in the new year. That's if I see him! I hope you stay well visionatsea and have a good Christmas

[Hiibilly]

What lucky folk we are. I am now wondering if my ME diagnosis in my late 20s was RA as I had swollen joints sever pain and fatigue. It's so difficult to unravel it all as there is so much overlap and similarities between these conditions, I long for a straight forward it's this and you do this. So much struggle and pain so much disrupted life. Thank you for sharing and best wishes for the festive season.