How to address PMR pain while decreasing prednisone

I have been on metotroxate for a year and really have had no problems. You only take it once a week and on that day, I sometimes feel tired but nothing that can’t be handled. I have giant cell arteritis which is an autoimmune disease similar to yours. I wouldn’t worry about adding it as the med is likely to help inflammation.

I am currently on methotrexate and have not had any problems I am aware of. I only take it once s week - 7 tablets. It works in conjunction with my cimzia and seems to be making a difference in my inflammation.

Thank you for the reassurance - I will probably decide to go on the methotrexate if my current dose of prednisone isn't helping in another month's time when I have more bloodwork. Meanwhile, I am monitoring the headaches that I have started to experience so hoping that isn't the onset of giant cell arteritis.

Good luck to you, Paulinef! Certainly hope everything works out for you!

been on methotrexate for over 7 years. now have serious anemia (which methotrexate can do this) so now i am off methotrexate. it was good when i was on it.

I have just been diagnosed with PMR, well sort of. The blood test for inflammation came back normal, although I have every symptom. It started about 5 months ago, when I started feeling really stiff and sore especially in the thighs and buttock area. It soon spread to my upper arms and neck. I began feeling such fatigue that I needed a nap in the afternoon. I have to admit to feeling frightened by these symtoms because I have always been extremely active physically. The Dr. said that we were going to treat it as PMR because it was all the classic symptoms, and so started me off on 20mg of prednisone. Within 3 days the relief was tremendous, and my good spirit was totally returning. I plan to start reducing in a week or so. Buy, last night I started getting pain in my hip, and this morning it is still there and quite bad. My question is: has anyone else had this? where all of a sudden a pain will resurface even while on 20 mg of prednisone? Thank you so much for any input

Hi Sally @sallygosse, welcome to Mayo Connect. I am currently in my second episode of PMR. Both times I was started at 20 mg prednisone and the symptoms were better almost immediately after taking prednisone but they did come back if I tried to taper off the drug too fast. It took me three years to get off prednisone the first time and the PMR went into remission for six years. I'm about a year and a half into episode two and I'm currently at 2 mg prednisone. The last time I went back and forth between 1 mg and 1/2 mg for over six months until the PMR went into remission.

It might be good to discuss how you are doing with your doctor and see if he still thinks it's PMR or if he thinks it would be good to see a rheumatologist.

Did your doctor give you a tapering schedule for the prednisone? Everyone is different and reacts different to tapering off of prednisone but a schedule gives you a starting point. I keep a daily log of the dosage and a few little ticks if my pain is worse than the day before. I try to tolerate a little pain when I reduce the dosage to see if it gets worse in a couple of days at the same dosage.

John

Thank you so much for your input John. It is so comforting to have someone knowledgeable to talk to about this. I had never heard of it until 3 weeks ago. I also didn't realize a rheumatologist would be the Dr. to speak to, as this isn't a joint issue, but muscle. But I will ask my Dr. on the next visit in 2 weeks. The tapering off she gave me seems quite radical after reading from other people. I was told to taper by 5mg each week, down to 5 mg and see how I felt. I could move back up 5 mg if the pain returned. Im starting to feel as though this was not the best advise. Have you ever experienced pain return while still on the higher dose of 20 mg. ? it is not unbearable, like before, but definitely quite uncomfortable.
Sally

Hi Sally @sallygosse, the good news is that there are a lot of us here on Connect with PMR. The bad news I don't have to tell you ☺ It's something I wouldn't wish on anyone. I have no medical training or background so all I can do is share my experience with prednisone and my episodes of PMR. From talking with other members here on Connect, you can draw some similarities and some differences. I think that's because each of us is a little different and may have different threshold levels for pain. I had my doctor prescribe 2.5 mg tablets of prednisone because 5 mg was too big of a jump for me and the pain came back. I have been tapering my dosage every 4 weeks. When I reached 5 mg for four weeks I dropped to 4 mg, then 3 mg and now at 2 mg. There have been several times where I have had to go back to the previous dosage for a few days or a week until I was able to reduce to the next step. It's really different for each of us but I would not be afraid to discuss a plan with your doctor that works for you.

It's really important to keep up with some kind of activity even if it's not a lot. Whatever you can do helps.

P.S. - I don't like quite uncomfortable either!

John

Hi @lioness, thanks for your private message. You mentioned you have the same diagnosis I have and you also have a L2 fracture so your thighs hurt all the time. You said that hot showers help but that is short lived -- where the muscles attach to the bones ,knee ,hips,ankles in particular.

When I first get up in the morning it's difficult for me to walk and move in general. I've had this old man PMR shuffle since I was in my 50s is what my wife told me ☺ I try to ride my recumbent exercise bike first thing in the morning for 30 minutes at least 4 or 5 days a week, not at a strenuous pace but enough just enough to be comfortable that I'm moving. It really helps loosen my joints and get around easier. I do a few stretching exercises also to try and get the other parts moving besides the legs. I like hot showers too but it is like you say -- short lived.

I also have osteopenia and my doctor suggested I add 1200 mg daily of calcium. About six months ago I started taking 1 tablespoon of a Collagen Hydrolysate supplement that is water soluble so I mix it in a glass of water and it's pretty tasteless. It helps with joints, ligaments and connective tissue. One of the side benefits is it good for nails. My wife was amazed with how her nails now grow and are stronger. I really never noticed that even though it's listed as a benefit. I'm not sure it helps with the PMR but I feel like anything I can do that's more natural is better than drugs. I would like not to have to take steroids which is why we all struggle to get off of that stuff.

Thanks for letting me bring your question back into the discussion!

John