Muscle pain

[Choco-Holic]

As a long time PMR’r 6 years, can I please just ask if anyone has had muscle pain at the back of the knee above calf area? I’ve got ongoing discomfort in my buttocks/back of thighs but never had the calf symptom before. I’m doing a bit of physio as rheumatology suggest that excercises may help, the physio mentioned something about the piriformis? but nothing seems to have changed in the 8 weeks or so. Also my inflammation markers are ok whereas in my early days of PMR/GCA they were always high. I had a flare in Jan/Feb 3 months after coming off methotrexate (which I posted about) so recommenced pred at 5mg tapering down to 2mg but still wasn’t comfortable so went back up to 5mg for a week or so then back down. I feel like I don’t have a grip of it (if it is PMR). Many thanks

[PMRpro Ambassador]

Did you go back to 2mg? If you are wobbly at a dose and use the flare protocol you almost always need to go back to the dose ABOVE where you wobbled.

Is the calf problem both legs or just one? Hamstrings can be involved in PMR but another thing could be a Baker cyst

my.clevelandclinic.org/heal...

[Choco-Holic in reply to PMRpro]

Sorry, I went above the last dose. It’s behind both knees/top of calf. Thanks for reply

[Bridge31 in reply to Choco-Holic]

I have the pain you describe but only behind my left knee. The X Ray showed arthritis but at the front and inner so the pain is transferred to the back !

[Timelost]

I had pain in both legs exactly like you described and that was the main reason why I was diagnosed with PMR. I gradually decreased my Pred last year and eventually came fight off about Christmas time, but all the pains came back by January. Started Pred again and am now down to 4.25 mg. Going very slowly this time.

[PMRpro Ambassador in reply to Timelost]

It isn't going very slowly at this stage that makes the difference - it is identifying the lowest dose that is enough, in your case, with the speed at which your symptoms returned it is probably about 1mg and you may need to stay at that for a long time before finally getting off. And what we suggest is not going back to the beginning, but adding 5mg to the dose at which your symptoms flared for a couple of weeks and dropping back to the last dose where you were really good - in your case probably 2mg and THEN going really slowly, 1/2mg at a time and staying at each dose for a couple of months at least, and even sticking at 1mg for much longer.

[Timelost in reply to PMRpro]

Thank you so much for this PMRpro. I will certainly follow your advice. Last time I didn’t start with 20mg but the doctor suggested 10mg for a couple of weeks then 5mg as I knew I’d been fine at that dose. I stayed on 5 for about 6 months now down to 4.25 dropping .25 about every 7 weeks. At the moment the muscle in my left arm has been hurting for a few weeks now and I am wondering whether I should go back to 5 for a few weeks to see if it’s related to PMR. What do you think?

I can’t think of anything I may have done to cause this.

[PMRpro Ambassador in reply to Timelost]

When it is stubbornly onesided it is less likely to be PMR directly. When I get the bicep pain it is always both arms. I would try adding 5mg for a few days and see if that helps - it all depends on how much inflamamtion there is, just adding less than 1mg might not be enough. But its been a while hasn't it.

[OakOwl]

I do have that pain in the back of my knees / upper calf just where you described. Doctors & physiotherapists have not agreed on a diagnosis (baker's cyst?? osteoarthritis?? something else??).

But I got physiotherapy for it - general strengthening and flexibility - for the past three and a half months and was just discharged yesterday. The pain is still there a bit but greatly reduced so I'm not noticing it most of the time. The legs are noticeably stronger and more flexible. And I'm back to being able to get up and down from the floor/ground which I couldn't when the pain was at its worst.

I wonder myself if the PMR stiffness in the hips / upper thigh meant too much stress on the whole back of my leg? But don't know.

[Choco-Holic in reply to OakOwl]

Thank you so much for your reply. I thought I was just being over anxious but the aches are real! I’m seeing the physio tomorrow so see what she says also. I’m happy to do any exercises in the hope it helps somewhat

[LemonZest11]

I developed a Bakers cyst behind each knee, blamed on squats but then put down to weakened calves and thighs due to PMR. I stopped all knee weight baring exercises such as lunges (the real culprit) and squats and eventually, at least a year, they reduced and disappeared. Identified by an ultrasound and completely harmless but very uncomfortable and restrictive.