Polymyalgia

[sylla123]

I am quite new to HealthUnlocked and Polymyalgia, although I did join some time ago for my late husband and his Kidney problems . I became ill with Polymyalgia 2days after my 2nd covid injection Astra Zenica 8/04/21. I started with aches all around my shoulders, I was in the middle of moving house at the time to be nearer to my sons after the death of my husband of 51 years and just thought I had been over doing the packing so I started taking a paracetamol it got worse so I was now taking a tablet every 4 hours and I could get by on that, as the day went on the pain became a little less ..... Moving day came April 20th 2021 and I really don't know how I got through it . My new house was not quite ready so I moved in with my son for 6 months. I just got worse so I checked in with a new surgery, the doctor sent me for a blood test and it showed an under active Thyroid which the doctor told me over the phone I had since 2012 ! This was news to me ! and I wanted to ask questions about it , but the doctor snapped at me shouting " do you want to take the tablets or not " and of course I shut up and said yes .. So I started tablets for Thyroid .. But I just got worse and I was screaming with the pain and couldn't even dress myself .... I asked for a second opinion and the new doctor sent a para medic to the house, she did lots of tests and yes I did have Polymyalgia aswell as the under active Thyroid ! It was 30 days before I was diagnosed and now started on 15mg prednisolone ..

In the summer of 2023 I had got down to one and half Prednisolone and by the new year Jan 1st 2024 stopped altogether, but recently I started aching again around my shoulders and not feeling great and I wondered if I should start again with the steroids and if one would be enough, But I could get to speak to my doctor as she was away . I noticed HealthUnlocked had a helpline so I phone and spoke to a lovely helpful lady named Monika and she really put my mind at ease and we decided on 2 tablets , I am improving too ! There is a but though, In June 2023 I got to see a Rheumatologist for the first time 2 years waiting for this , he was so lovely and helpful and ordered a full body CT scan .. For my age 87 I don't have too much wrong with me except for the "P" word but the steroids had taken their toil on my bones as I have osteoarthritis and fracture in my T12 and 2 more mild ones in my end plates at L2 &5 .... He sent me to the Osteo clinic and I now take Desunin Colecalciferol vitD tablets , A brace which I cant get on with and they want me to start the under the skin injection Denosumab(Prolia) Which lasts 6 months and must then be done again with no delay .. I am not happy about taking this drug after reading the side affects , when my doctor is back I will be talking to her about this .. But I have had so much trouble with side affects and now I seem to be rid of them I just don't want to start all over again .. I wonder if any one has experience of the drug ?

[piglette]

Have you had a Dexascan to check your bone density and to see if you really need tablets?

[sylla123 in reply to piglette]

Thank you .Piglette for your quick reply... good thinking ! do know I had a dexascan summer last year , and I never got the result , I will be asking my doctor when she returns ..

[piglette in reply to sylla123]

I should definitely chase them up.

[sylla123 in reply to piglette]

Certainly will Piglette and thank you for jogging my memory on that !

[PMRpro]

There is a dedicated PMR and GCA forum on HU with loads of us with PMR and fairly sure there are some on Prolia there so do come and join us.

healthunlocked.com/pmrgcauk

I have recently been told I probably have a spinal fracture and been put onto zolendronic acid to "stablise the bone" to quote my rheumatologist. I had an infusion last week. I wasn't offered Prolia, had I been I think I would probably have chosen that.

Which side effects are worrying you?

[sylla123 in reply to PMRpro]

Thank you so much for answering so quickly PMRpro...... side affect skin infection ... low blood calcium level ...Osteoecrosis..... Atypica (unusual) bone fracture ... I will look later at the dedicated PMR&GCA forum Thank you ...

[PMRpro in reply to sylla123]

The calcium level should be monitored and you take calcium and vit D supplements - which you would be taking anyway. The osteonecrosis is very very rare and more likely in patients with underlying pathological conditions such as breast cancer or prostate cancer where the Prolia is used as part of the oncology regimen to stop calcification of soft tissue. The atypical bone fractures are also extremely rare. But they happen, so must be mentioned.

Your best advice will be found by ringing the Royal Osteoporosis Society helpline

theros.org.uk/

[sylla123 in reply to PMRpro]

Thank you very much again PMRpro

[yogarita1955]

hiI have GPA

not the same but same drug s

I struggle with medication thay want me on bone thinning tablets as I'm on 6 steroids a day

but I struggle with side effects and question the specialist he doesn't like it but it's about quality of life its hard for someone to understand how it make you feel if you're not ill

nothing worse than feeling ill all the time

you do what you feel is right for you x

[sylla123 in reply to yogarita1955]

Thank you Yogarita 1955

[yogarita1955]

not every one gets the side affects x