Update on rheumy appt

[Topcar]

Had a very satisfying appt on Monday with rheumy which was arranged by specialist nurse after having what she and GP were concerned was a pmr flare, (hip/leg ,upper arm shoulder and neck pain which became so bad I couldn't lift my head from the pillow! I was started on mtx 12 wks ago with a view to reducing pred which I was struggling with after having to increase to 40mg following a severe allergic reaction to hydroxychloroquine ! but as soon as I hit 15mg which I was at before allergic reaction the pain started to sneak back, it was bearable at first so I was encouraged to keep reducing as "the mtx should kick in anytime soon " however at 13.5mg and a call to rheumy nurse I was advised to have blood tests and go back to 15mg, 5days and little improvement later and all bloods except slight rise in crp OK I had to go to 17.5mg pred and yes pain gone next day!!! Rheumy still worried by having to increase pred again and no real signs of mtx kicking in yet so thinks the question mark RA may be a factor as well, she says she is determined to get to the bottom of whatever is going on and has ordered neck/hip x-rays ,dexascan , & extra blood work and will see me again in 4wks after which she'll review the mtx and pred which she has advised me to try and reduce now by 1mg a month if possible but trusts me to judge for myself. She agreed that flares are hard to define and blood results versus patient recognition of different types of pain must always be taken into consideration! So all in all it was a fairly fruitful consultation.

[PMRpro Ambassador]

Sounds positive - even if it had moments you'd rather not hear!

Has myofascial pain syndrome been considered as a reason for the severe neck and shoulder problems?

[Topcar in reply to PMRpro]

She didn't mention myofascial pain ,but said the neck pain isn't typical of pmr although the arm and shoulder pain is also the hip pain, but not the leg pain and weakness ,so the extra bloods are to check muscles and bone along with x-rays and dexascan although she said not everything will show up (myofascial being one of them)I may end up with the bone marrow aspiration I was threatened with at Christmas, although those bloods are within limits now she's still not happy as in her words "something is going on and it needs diagnosing & treating as ultimately most things are treatable! the difficulty being prioritising the culprit"

[DorsetLady PMRGCAuk volunteer in reply to Topcar]

Well at least she is investigating, and not just assuming it’s PMR, and not leaving you to get on with it!

[Topcar in reply to DorsetLady]

Thanks DL hope you are keeping well 😊

[DorsetLady PMRGCAuk volunteer in reply to Topcar]

Yes, I’’m fine thank you…enjoying the sunshine 🌞

[Topcar in reply to DorsetLady]

It's sunny here too! certainly makes one glad to be alive and trying to kick these health issues into shape ,as my Mum always said even when she was very sick " worse things happen at sea" !!!

[DorsetLady PMRGCAuk volunteer in reply to Topcar]

My mum’s favourite saying as well 😊

[PMRpro Ambassador in reply to Topcar]

Leg pain and weakness??? MPS will do that too ... How does it manifest?

[Topcar in reply to PMRpro]

Firstly Thanks for your replies , leg pain after sitting or lying, down backs of upper legs which sometimes makes them buckle and arms when reaching with both together makes me drop things if I forget and don't just use one arm!

[PMRpro Ambassador in reply to Topcar]

I would think that greater trochateric pain syndrome could account for the lower body thing - it can be enough to make knees give way suddenly. And if your upper body is also affected by tight muscles the nerve supply to the arms could be compromised in the same way if your reaching is just in the wrong position.

But venous insufficiency is another cause - have you tried support socks?

[Topcar in reply to PMRpro]

I think you could be right with trochanteric pain it seems to fit, I do have trouble with large red blood cells which reduces oxygen supply to muscles ,maybe that has got worse again which might explain some muscular weakness ,but my b12 is OK atm, just have to be patient I think and see what this set of tests find! 🤞my lower legs aren't affected and my GP checked all my pulses but I'll still bear the support socks in mind anything is worth a try ! Thanks again