need advise please

[M1222]

I’m female 77 years old diagnosed in February 2022 with PMR with typical symptoms pain across shoulders unable to get off toilet needed to lift my leg to get in car pain in hands and feet( know that’s not typical) trouble raising arms. I’m also a caregiver for the last 7 years for my husband of 57 years with colon cancer remission and Lewys Body dementia. I have no other health problems. My CRP and sed rate are normal. Don’t think my rheumatologist and PA have seen PMR First words out of mouth was want you off prednisone which made me be able to function. I started on 20 got down to 6/7 now on 8 mg I take usual vitamins and Prilosec. My PA started me on Kevsara but had a reaction pain in neck scalp and eye woke me up. Did second shot same reaction so was told to stop. That’s why I’m up to 8 mg. Had my eyes checked all ok. Now they want me to start methotrexate 10 mg once a week and folic acid 1 mg every day. I know stress in my life and lack of sleep is not helping but I fear starting different treatments. Any help and advise because I know others have gone thru what I’m going thru would be greatly appreciated. TY

[PMRpro Ambassador]

Have you any option of finding another doctor who will treat the patient not the textbook?

Does 8mg manage the symptoms? They MUST take the fact you have to function into account - my rheumy never argued about the pred I needed as long as my husband was alive. When I had a major meltdown 5 months after he died he then put me on Actemra and I have been fine on that and got from nearly 20mg down to 6mg without problems - now it is adrenal insufficiency problems that are stopping me getting lower.

I really understand your reluctance because I have been in the same situation - and if 8mg is working for you, I'd be reluctant to try methotrexate just in case it messes things up for your caring responsibilities. It does work brilliantly for a small proportion of patients - and you have to try it to find out if you are one. It might be worth trying - but I'm not convinced unless you are stuck at a higher dose of pred.

[M1222 in reply to PMRpro]

My PA wants to refer me to Duke but I ask if they know about PMR and she was going to check. (Me too) she’s not happy I’m back at 8 but if I’m careful I function ok. I’m still deciding about the methotrexate I needed to hear from someone who understands. Sometimes I feel like I’m nuts! Ty

[PMRpro Ambassador in reply to M1222]

If you are - so have we all been at some point!

[SheffieldJane]

I don’t think that getting in and out of the car is that unusual. I still have that, even on good days, especially if the sidewalk is on a slope. My worst pain has been in the groin area and if the knees join in, it is very difficult.

Your doctors don’t appear to understand our disease. Pred is the only drug that will give you mobility and making you feel guilty about it is contrary to healing. I would be looking for a better one. I am sorry that you have so much to bear.

[M1222 in reply to SheffieldJane]

Thank you my son is an ER doc and knew I was having problems with doctors thinking it was anxiety and old age. My son saw me getting in and out of a car lifting my leg and started doing research and came up with PMR. He sent my primary doc a note she ordered a dose pack of prednisone and I thought I was cured. My primary had never seen PMR in20 plus years of practice. My bloods have been within normal limits. I’ve had a wonderful marriage and I just want to take care of my husband.

[SheffieldJane in reply to M1222]

PMR lasts around 5 years on average. Your son sounds terrific.