RA and PMR

[Nanna71]

Last appointment my doctor is wondering if I have polymyalgia rheumatica, PMR, as well as RA since I respond so well to prednisone and not so well to methotrexate and the addition of sulfasalazine (both MTX and sulfa. have been increased) .

He has set up an appt. with a rheumatologist (5 hours away) to get some clarification. The prednisone works really well for pain and as we are trying to wean off, I can't seem to get below 15 mgs without big pain push-back.

At 15 mgs I can usually do daily life (also taking, as I said, MTX and sulfa.) quite well and I don't get sleep disturbances. But 20 mgs is the best. However, I am concerned about the bone shredding that may be going on. I am a 72 year old female.

How do I join the PMR community?

Also, any feedback from my RA site is very much appreciated.😵

[Chrisellie]

Hi Nana71

The top of the page there is a My Hub link.

View all my communities and then find a community.

Type in Polymyalgia or Pma

Hope this helps.

[MissMinto]

Hi Nanna,I have RA and PMR and absolutely cannot tolerate oral steroids. So instead my rheumatologist (or the nurse) give me a steroid shot in the bum, which lasts about 3 months.

I have four jabs a year and they really help to keep everything under control. By injecting it doesn't seem to affect digestive system or bones, and my rheumy says 4 per year is still within the safe limit.

Definitely something to discuss with the rheumatologist - and ask if he can write to your GP about shared care so they can do the injections at your local surgery rather than travel all that way every few months.

Good luck, I hope you get sorted soon.

[GranAmie]

we seem to have a lot in common - sort of - Nanna. I had PMR 1999 til abt 2012 then RA diagnosed 2015 [ see earlier replies 2u]. Earlier this year i discovered that PMR is now called 'muscular RA' [thanks HH] so there does seem to be some sort of link.

[GranAmie]

where in the world are you with -31c temp?

[Nanna71 in reply to GranAmie]

Central interior of British Columbia, Canada, In the Rocky Mountains sort of. Not the biggest ones. My house is in the side of a mountain or as people here call it, the rim rock. You have a lot more time into this (these) diseases than I do. Maybe I could be your apprentice. 😊

[GranAmie]

Wow! good for fishing tho' {not the mountains, obviously]. No apprenticeship tho'... what helps one doesn't work for another, sadly. I now have osteo as well, but found that hi-dose glucosamine with chondroitin [750+600] strength is helping that. Due for next annual infusion June {truximab = rituximab bio-similar and so far so good, after disasters w/methotrexate}. Good luck, good health, take care xox

[Nanna71 in reply to GranAmie]

Yes, good salmon fishing here, should I ever be able to get into a boat again.😃 Also, I see that we are already differing in diseases and meds. I have no trouble with MTX except for hair loss, which doesn't hurt. Also don't seem to have problems with the prednisone and the sulfasalazine.

[GranAmie]

Yes, MTX did me harm, but well recovered now. Sulfa I'm still wary of so only take half dose. Tho' i begin to wonder if it actually just gave me a clearer perception of my life here, which is why i wanted to leave. Ho hum.Pred was great, altho' so was my appetite, but the rheumy wanted me off it. I loved the edge it gave me intellectually. BTW any responses from me will be intermittent as access can be diff. x