My partner developed PMR in February 2021 and has managed to taper down from the original 20mg to 5mg over time using the DSNS system with occasional stops at certain doses to cope with life events.
Originally he was diagnosed by the GP who then referred him to a rheumatologist who didn't believe he had PMR as his hands /fingers were affected (as well as shoulders/hips) However, he gave him the standard reduction program which we followed initially but then discarded as we learnt more about the disease from all the knowledgable folks on the group.
Following the first consult with the rheumatologist in July 2021 he had a follow up call in Sept 2021 where it was agreed that he would continue to reduce and there would be another call in March 2022 to check progress.
Since June 2021 my partner has no contact from the GP and no blood tests.
The follow up call from the rheumatologist never happened in March last year either. However, suddenly he received a letter inviting him to an appointment tomorrow with the rheumatologist.
My partner is more than happy to simply continuing using the 7 week DSNS taper and see how he goes. He knows he doesn't want Methotrexate which was mentioned at his first appt. What I think he does need are a full range of blood tests, plus a second DEXA scan. His first one was OK back in 2021. I'm also worried about diabetes. Can you please advise what he should be asking for tomorrow afternoon. Sorry for late notice - suddenly realised the appt is tomorrow, I thought it was next week
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Fudgethecat
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If he has got to 5mg on his own then there is absolutely NO indication to add in MTX at this stage. The problem now is more the return of adrenal function and if the PMR emerges as he goes lower, this is a low dose to manage it with few risks.
I honestly can't think of anything for you to ask him. Wonder if it is the same person - and I hope he has learnt that many experts in the field acknowledge hands and wrist are a feature in about half of PMR patients.
Bit late to worry about diabetes - the Hba1c will give an indication there, I would complain about the GP practice though. Not monitoring a pred patient for diabetes is very poor even if they don't do anything else!
Well, thats terrible follow up. But I’m not surprised. He’s done very well to get to 5mg in that time (I’m at 6.5mg after 5years). I agree with refusing Methotrexate if they offer it. He’s doing well without it and at a lowish dose now. I think he needs a full range of blood work incuding Hba1c (measures average blood sugar over the last 3months) and ESR. Also Dexa scan. I’ve only ever seen GP and only get blood tests etc if I ask for them. I ask once a year or if I suspect a flare. Its awful GP’s don’t follow up actively - maybe yours just left it to Rheumie! Terrible anyway. Good luck tomorrow, hope it goes well and you get what you need.
I had PMR for 7 months before I was given Methotrexate in September 2019 for Sero Negative Inflammatory Arthritis which is being treated as if it is Rheumatoid Arthritis. It has caused me no problems but just a week ago my 22.5 Metoject injection has been reduced to 17.5, why I don't know. So now I have to have fortnightly blood tests instead of the 2 monthly blood tests I have been used to. I expect this is because a close eye is being kept to see how I react to the reduced dose. I stopped hydrocortisone 10 mg for PMR in October 2022 with no repercussions. Sorry I can't be more helpful.
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1st Post and 1st Rheumatologist tomorrow - what to expect?
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Good appt. For a change
