Aching legs

[geater16393]

I am on 1.5 mg pred after 4 yrs, but I am really suffering with aching throbbing legs, have never suffered with this all through my PMR journey , all my pain was more in neck shoulders and hips.

Has anyone else suffered with this?

[PMRpro Ambassador]

I assume you have asked your GP? Don't fall into the trap of blaming everything on PMR or GCA! Remember that in 4 years all sorts of things can happen.

[geater16393 in reply to PMRpro]

No, I will make appointment this week

[elainemwh]

The pain I had started in my legs. The neck pain did not start until later. I struggled going upstairs etc

[PMRandRA in reply to elainemwh]

Mine started in my legs too. Couldn.t get out of chairs just using thighs, knees and had to push with arms to get up. Cried with pain at Doctor time after time and was noted to be a hypochondriac! Great stuff considering I also had GCA undiagnosed at that time and a dicky heart which ended up with a triple bypass at St Georges.. Close call.

[Trenny]

Do your legs hurt all the time or is it when you walk? Do you feel that it is the calf muscles that hurt?

[geater16393 in reply to Trenny]

My legs hurt intermittently

It is all of legs

[Lafontainepam1]

Leg pain like that requires a visit to the Dr. It could be a possible blood clot, need to get it checked out.

[cdenoncourt]

I had aching/throbbing legs when I got down to 4.5 mg. prednisone. I have PMR & GCA and leg pain had never been a symptom. The rheumatology nurse who was monitoring my treatment ordered arterial studies on my legs and everything indicated normal circulation. She suggested it might be due to prednisone withdrawal after 4 years. I continued a slow taper and when down to 3 mg. I had also had pain in both hands and feet, also never previously a symptom. I was tested for RA and found no sign of it. Again it was considered prednisone withdrawal. A few months later, I had a flare. I now consider that I should NOT have taken these signs as prednisone withdrawal pains, but as a sign that I should have stopped tapering (even slowly) for a while. My blood tests during that time were all in normal range, but the ESR was slowly rising. I'm back down to 5mg. now and at any sign of pain along with rising ESR, I will stay longer at whatever my current dose is for as long as it takes for the ESR to stabilize. I hope my experience gives you something to consider in analysing your own situation.

[autrainriver]

Very interesting because the symptoms I have began with a sudden onset of pain in the calves. Went to the knees and especially the side of the knees and into the thighs. Pain is bi-lateral. Docs suspected back problems, had MRI's, the whole gamut. Neurosurgeon said not the back and then began the blood tests which by now were altered because I had a predisolone dose pack. Got so bad could barely turn over in bed, get to the bathroom, sit or stand and ended up in the ER. What I have is being called a myalgia and for now be treated like PMR. After I stayed off prednisone for another painful period of time the ESR and CRP levels jumped. Started 15mg of prednisone which has made a big difference. Following the dosing schedule for the British Society of Rheumotology. If you are interested Google Best Practice Journal Issue 53 and there are two articles relevant to this support community. One on PMR the other on GCA. For now I am going to follow the titrating schedule of the British Scociety of Rheumotology and at 10mg switch over to the dead slow and nearly stop reduction plan posted by PMRpro. The reason for this is my mother was diagnosed with PMR and never got off prednisone and in 25 years she had every nasty possible effect possible. I have an appointment at the Mayo Clinic in mid January and will finally see a rheumotologist and hopefully go through a thorough rule out process which has not been done. Legs are considered atypcial of PMR, but it is in the literature if you dig deep enough. Hope this helps.

[Trenny in reply to autrainriver]

My Rheumy thought that my leg pain may have been referred pain from a back problem. I didn't really feel that it was, but the MRI scan did show many lower back problems, so she may be right. The pain has changed slightly over the last two weeks and feels more like muscle weakness and I feel very weak-kneed. I hope you sort yours out soon. It is an idea to keep a diary of any changes. I am down to 7mg Pred.

[judam9]

hi geater 16393,

i have sciatic nerve pain, and stinosis and it seems that one starts [the back] and leads down to my leg. i take three pain pills a day, and it helps when i;m sitting down. but can't sit forever. so i just live with it. i'm sorry to say. but i have no other choice. just part of life i guess, live with a few aches and pains. just keep going.

not much help but to know that you aren't alone.

[112045]

thigh pain, if that is what you are experiencing, is common in pmr, I have it quite often, not fun, but all the other advice to get things checked out is right on. You could be experiencing a flare. Kills me at times just to walk up stairs. I am 70, have had this for 4 yrs. I still hope for a remission. Currently on 13 mg of pred. after having 2 bouts of shingles, want to get it down, last summer I was on 7 mg and doing okay. Hope to at least get it down to that again.

[Eastender]

I too had bad leg pains last year in my leg, it got so bad I struggled to walk, after a lot of asking doctor if it could be a clot, and told no it wouldn't be that, I was eventually sent for a leg scan, and they found two clots one in my calf and one in my groin, so go with your instincts and if you think it's serious then push till you get help, or go to A&E

[Narducci]

Hi

Yes, I suffer from aching legs too. I was diagnosed with GCA two years ago and having started prednisolone at 40mg a day am currently on 7 1/2 mg.

Next time I see my rheumatologist I will definitely ask him about this -

have you reported the problem to your doctor or consultant?

Would be interested in hearing whether this is a recognised side effect

of taking steroids.

Best wishes