Update from last week

Hi All,

Many Thanks for last weeks support & advice, following on from the below post:

My farther seen his RUM specialist who advised him that he thinks it is definitely R/A last Tuesday. He advised him that the Met is not yet working and they may supplement this with another drug to assist the Met. Before that due to his condition at the time (Last Tuesday) he arranged for 500mg of Methylprednisolone on the Wed, Thurs & Fri. By the Thursday he was QUOTE feeling 2/10 hasn't felt like that in months!!. Based on this they cancelled his Friday dose.

By Saturday / Sunday he was starting to feel poorly again and today he is back to a 8/10 and struggling to get out of bed. He phoned around the houses again today and one of the nurses has advised him to stop taking the Met and arranging another appointment with R/A specialist? As I have stated below I am convinced by his reaction to the steroid that this is PMR and not R/A, and by reducing the dose so rapid will continue to have a negative affect on him as he has never had a balanced programme of steroids over 15mg.

I cant understand the specialist resistance in calling PMR only and treating with a balanced course of Ped, maybe 20mg or higher to start

Historic post below - Sorry for the long read!

I recently stumbled across this website while desperately searching for some explanation into PMR after my farther was diagnosed with it about 5 weeks ago following a night in A&E due to 10/10 pain around his hip & groin area. I believe that this group has provided my family with critical information that has helped us have a basic understanding of the condition (Something that has never been provided elsewhere)

August 2016 my 68 Y/O farther was three years into his deserved retirement when he began to suffer pain in both arms and hands. This led to frozen shoulder diagnosis and tennis elbow diagnoses which was treated with what my farther explained as a magic steroid injection. Post injections my farther would resume normal service for about four weeks at which point he would be a 9/10 pain score again in his arms and hands.

By December my farther had been diagnosed with R/A and was prescribed with MTX which was started in then first week of 2017.

Over the last five months my fathers health has detreated rapidly to the point were yesterday he cant get out of bed some days, requires support to get when he can, ans was stuck on the stairs for wo hours last night as he could not move any of his body due to pain and fatigue. As I started with five weeks ago he was diagnosed with PMR after a bad night that ended in A&E. He was prescribed 15ml Ped and informed that tis will reduce over weeks months. I think his ESR rate was around 28 at this point. Last week my father was admitted to hospital by the R/A nurse who was concerned over his condition, during the assessment his ESR rate was 52 double than @ the start of the 15ml Ped, which was decreased to 12ml 3 weeks after he started with 15ml

Apologise for the long post & I am not sure what I am looking for with this other than documenting the events for my own digestion. As with allot of the posters, the problem we have is that multiple professionals are providing analysis independently and we struggle to get straight answers from each during appointments

Would it be possible for him to not have R/A and just PMR or GCA based on the reaction to the steroid injections late 2016. If tis is the case I cant see why they haven't started him on a higher dose of Ped?

Current conditions like most,

Fatigue and pain to the point of non movement for 14 hours a day - Worse AM

Sweating heavily at night

Whole body pain - Worse in upper areas

Trouble sleeping

Thanks

4 Replies

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  • Even if it is RA, the methotrexate will take up to 6 months to work and many rheumies give a course of pred in the meantime to help the pain and stiffness. But having done it - you don't just suddenly stop the course after 2 days!

    Why on earth won't they let him have a course of oral pred, starting at 20mg and reducing slowly. If the methotrexate is starting to help RA he will eventually be able to reduce the pred to a very low dose, even zero. If it is PMR then much the same will apply because mtx is used in PMR by some rheumies in the hope of getting to a lower dose of pred.

  • Not sure, they started him on 15mg pred about 6 weeks ago which had no affect. He got reduced to 12 after three weeks. As it turned out his ESR had nearly doubled from the start of pred in the 6 weeks (They took a reading when he was admitted to A&E week before last

  • He has been on then Met for five months now. Over this time he has detreated from how he was prior to xmas time

  • Think a second opinion might be a good idea - particularly since the pred had such a good effect.

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