RA

[Angex05]

Hi, I’m in my 3rd year of PMR, I was down to 1/2 mg last Xmas but after a stressful time had to go back on 10mg. 4 months ago I woke to swollen hands and feet and didn’t think it was PMR and saw my doctor who said to go back on 20mg for / weeks, wasn’t happy with this but took them and all was good after the 2 weeks but as soon as I went back to my normal dose, 5mg, the swelling came back. Saw a different doc who said I should never have upped my steroids 🤦🏼‍♀️ They gave me some anti inflammatory meds, didn’t work. After seeing yet another doc they said maybe it’s RA. NHS appointment for 3 months, I can’t stand the pain for that long so going private this week. Anyone else have any issues like this? I have no clue about RA. HELP!!!! I was 52 when diagnosed with PMR Thanks x

[SheffieldJane]

Poor you Angex05. I would have assumed that I was out of the woods with your history, then stress appears and your body reacts. It is unhelpful when doctors rubbish what their predecessor has done. It just makes you feel all at sea. There are numerous potential causes for your symptoms and I imagine there will be a raft of tests. Even peripheral neuropathy can present like this. I believe that RA and PMR can produce very similar symptoms as well. It is no use speculating really. It is good that you have been able to go privately. I hope your consultant gets to the bottom of this quickly!

I sincerely hope the stressors on you have lifted and that you will obtain relief soon. Please let us know what happens to you. Very best wishes Jane. X

[SnazzyD]

Hello, did they rule out RS3PE (Remitting seronegatve symmetrical synovitis with pitting oedema)? That causes swollen feet and hands. Same treatment as PMR.

[Angex05 in reply to SnazzyD]

Wow, that’s a mouthful. I’ll mention it to the specialist. Thanks

[SnazzyD in reply to Angex05]

It is also associated with PMR and would explain why it improved on 20mg.

[Angex05 in reply to SnazzyD]

Thanks. I’ve just googled it now

[Hidden]

Hi Angex05, I cannot imagine how discouraging this has been for you; being down to 1/2 mg and then experiencing all those issues!!!! And then going back to 20 mg! Argh!!!!!!

I hope they are able to pinpoint what "it" is and treat you accordingly... and I'm sorry about the pain.

Your post has been a GOOD reminded for me, that my PRIMARY goal is not to reduce my Pred intake, but to reduce the inflammation in my system and become stronger and healthier! I forget sometimes (quite often actually) that simply reducing the meds is not the goal and does not mean I am "well." Thank you for reminding me.

I wish you the best and hope they get you sorted out quickly... I'll keep you in my thoughts and send healing thoughts.

[Angex05 in reply to Hidden]

Thank you X

[PMRpro Ambassador]

"Saw a different doc who said I should never have upped my steroids " - on what grounds?

Have you heard of RS3PE syndrome? - Obviously now, as I see Snazzy mentions it!

[Angex05 in reply to PMRpro]

Hi, the 2nd doctor said that if I wasn’t on pred already that they never would have prescribed it for me, Just anti inflammatory meds. Upping to 20mg is just masking the underlying cause was their reason. I’m really hoping my rheumatologist will shed some light on things. My original rheumatologist signed me off after a year of seeing them with my PMR, they said I was doing well and didn’t need to see me again 🤦🏼‍♀️

[piglette in reply to Angex05]

It seems to me that you have medics round you talking baldedash. Surely you want to mask the underlying cause if it means you are in pain and that is why you take pred. Good luck with your private rheumatologist.

[PMRpro Ambassador in reply to Angex05]

And what exactly do they think anti-inflammatories do? Other than nothing useful in PMR and with potentially worse side effects? If the dx is PMR - it is corticosteroids. NSAIDs are no longer recommended - see Rec 1 here, you can't be much clearer than that,

rheumatology.org/Portals/0/...

And the top of the range for starting dose is discussed in Rec 3 - some people need more.

Really people - pay attention and keep up-to-date and stop going to sleep in the back row. This affects patients who are severely disabled by their pain - so get it right,

[Angex05 in reply to PMRpro]

I can’t open this link

[PMRpro Ambassador in reply to Angex05]

It works OK for me. Try googling

2015 Recommendations for the Management of

Polymyalgia Rheumatica

A European League Against Rheumatism/American College of Rheumatology

Collaborative Initiative

Christian Dejaco,

You will get several links - not all of them will take you to the full text so keep trying.

[Angex05 in reply to PMRpro]

Thanks

[Grants148]

Sorry that after getting down to just 1/2 mg., you had to increase your dose to20 mg.,l do not know much about R A,but l often get swelling above and around my knees which my GP said was RA,and when my feet and ankles swelled up another GP said it was caused by the Pred.l hope that you will feel better soon,it is as mamici has said,all about reducing Pred to a level where the inflammation is controlled. Please keep posting to let us know how you are,very best wishes ,Patricia .