Update on pmr?! Symptoms: I wrote around 6wks... - PMRGCAuk

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Update on pmr?! Symptoms

Mollieharry
Mollieharry

I wrote around 6wks regarding pmr symptoms eg burning pain in shoulders and glutes,no muscle strength.turning moving in bed torture.high crp and esr,rapid weight loss.eventually go put me on prednisalone for 4wks till I got my ra routine appointment.first day of taking them was miraculous,pain eased,over a few days fatigue lifted and my appetite returned.the last 3 wks is the best I’ve felt for ages.had ra appointment yesterday and rhuemo totally dismissed it for pmr and said it was the ra that wasn’t under control,ra dmard drugs not working.he’s going to send me another appointment,reduce the prednisalone and a few days before i’m due the appointment,come off them completely so they can do a score test for pain to get access for biologics.i repeatedly said to him this pain was different to my ra pain.but he still wanted to go with this.I know they are the experts,but I really think he’s wrong.totally fed up.

10 Replies
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PMRpro
PMRproAmbassador

He probably is wrong - but I doubt he will admit it! They may officially be the experts but they have rarely actually experienced it.

You are in the UK - do you always see the same rheumatologist?

Mollieharry
Mollieharry in reply to PMRpro

Yes I’m in the U.K.no,I go between the one I saw yesterday and the one who first diagnosed me.people have told me they are good rhuemotologists.that was the first appointment with the consultant from this time last year,it’s normally the ra nurse in between.so fingers crossed he’s making the right decision,I’m just not convinced.

Hidden
Hidden in reply to Mollieharry

It's really horrible that he is going to try and force you to suffer to prove his point. I would be going back to my gp as s/he was the one who tried pred. You know your own body. I hope you are able to manage this process. If one drug worked why would he want you to change if it managed symptoms?!?!

Mollieharry
Mollieharry in reply to Hidden

He says the ra could be doing damage,so they need to make the next move.suppose if this is what he really believes he’s making the right decision,and I should be grateful that’s he’s acting on it,but it in my head I believe he’s wrong.time and pain will tell,cld be sick at the thought of going back to where I was a few wks ago.He says prednisalone really not good for me.the it has a lot of side affects.im thinking no more than the methotrexate,sulfasalazine and intended biologics.🤔

Hidden
Hidden in reply to Mollieharry

I agree. It still seems wrong to deprive you if drugs to get a pain score. Then try and control pain again with a drug that will help Ra but not PMR. The one thing we know for sure is that stressing about it all won't help. I hope it all goes much more smoothly that you anticipate. And surely if your pain score goes up when you get lower on pred that should do?

Sudswathi1
Sudswathi1 in reply to Hidden

Here in India we have a blood test which tests for rheumatoid arthritis..that way you can be sure before you change prednisone. Have you got it done?

Yes,I was diagnosed with sero-negative ra a couple of years ago.medication worked for year and then I just seemed to flare.this was when they added it the mtx,with no change,but the pain I’m feeling now is much different.thats when gp thought pmr could be overlapping.rhuemo disagrees.

PMRpro
PMRproAmbassador in reply to Mollieharry

Me neither! Hope you see someone else next time!

Which biologics did they discuss , did you catch the name?

Rhuemo never discussed with me which biologic they were thinking about.

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