Maybe RS3PE on top of the PMR

[SusyTe]

Has anyone had RS3PE with pain but no swelling? My hands are not swollen but the backs of them are so sore and painful. I haven’t had this pain in the backs of my hands before in my PMR journey.

So sick of this blasted illness and the pain. I am on 5 mg but in so much pain everywhere today and have a funeral to go to so I have taken 10 mg this morning so I can get through the day.

I was diagnosed aged 53 six years ago and I really thought by now I would have got to remission. I don’t drink alcohol, I eat healthily, I take turmeric, marine algae oil, probiotics, Vit Bs, C and D, magnesium and CBD drops and have an infra-red sauna blanket. I am willing to try anything to get rid of the pain. I know it could be worse - others have things much worse - but it does get me down sometimes.

Sorry - have gone off the subject - would like to hear from anyone about RS3PE?

[PMRpro Ambassador]

You sound like me - my hands were a factor before diagnosis and all improved on pred and have never protested since but the last month or so I am very conscious of them being uncomfortable in a similar way to what you describe.I agree - I'm thoroughly miserable at present, pain all over. But NOT at 5mg, which I could accept!

I too was early 50s when my PMR started and it is still there - or something is. But I feel there is something different now - not sure what, but it has changed a bit. I think it is one version of PMR - really can't face the thought of something else!

[SusyTe in reply to PMRpro]

Thank you for replying - I really appreciate it. I was worried about my hands - if anything touches the back of them it makes me yelp. Never experienced this before. Need to get through today - the funeral of my best friend’s father - such a lovely man. I am going to stay on 10 mg for a few days to see if it helps. I am sorry you have horrible pain at the moment - I know you have had a sad and stressful time, and I think it makes the pain worse. X

[PMRpro Ambassador in reply to SusyTe]

I think so too - and hugs xxx

[SusyTe in reply to PMRpro]

Thank you for the hugs and sending you some too 🫂🫂xx

[Constance13 in reply to PMRpro]

You need a holiday. Away from problems - somewhere you can be spoilt. Four or five star hotel with all the facilities. All meals made for you. Relax in the swimming pool, get rid of unwanted thoughts in the sauna, have a massage, etc etc.

[MiloCollie in reply to PMRpro]

Aaah YOU miserable? You’re so inspirational and supportive to us all I can’t bear the thought of you being miserable. Sending you a big hug and a cream cake!❤️

[PMRpro Ambassador in reply to MiloCollie]

Thank you! I did cheer up a bit sitting in the sun yesterday afternoon with an Aperol spritz This morning wasn't quite as bad after a serious 2-pronged attack by my rheumy yesterday - another 4 days of that to go ...

[DorsetLady PMRGCAuk volunteer in reply to MiloCollie]

Maybe not the cream cake….🤣😂

[PMRpro Ambassador in reply to DorsetLady]

YOU are just mean! I shall aim for an icecream in the sun today

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Was thinking of your food intolerance-not being mean -you know better then that 🤣😂..Enjoy ice cream 🍨

[PMRpro Ambassador in reply to DorsetLady]

On enough pred at the moment to get away with eating things! But I discovered the baker in the village uses spelt flour for almost all their cakes And they really are rather fine ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

…well go on then..🧁

[podo]

I too thought I might have RS3PE after many years of PMR. My Rheumie didn't agree however, diagnosed seronegative EORA & gave me Hydroxychloroquine in addition to the small dose of Pred I was on at the time. This combination has worked well in the 3 years since this Dx but I am always looking for ways to reduce my medication load (currently 400mg Hydroxy + 2.5mg Pred). The R in RS3PE is the bit that interests me! At least my RA doesn't seem to have progressed & I have managed to stay off the threat of Methotrexate.

[SusyTe in reply to podo]

Interesting, thank you. I am glad your RA has not progressed and that drug combination has helped.

[PMRpro Ambassador in reply to podo]

It's remitting - which suggests to me it can come and go

"Remitting seronegative symmetrical synovitis with pitting edema (RS3PE) is a rare syndrome characterized by “remitting,” “seronegative” (namely rheumatoid factor-negative), and “symmetrical” synovitis with pitting edema on the dorsum of the hands and feet."

[SusyTe in reply to PMRpro]

Thank you. As I have no swelling I thought maybe it couldn’t be the problem I have.