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Has anyone with PMR experienced acute calf pain on exercise?

  1. I am new to the forum having only recently discovered its existence, I was diagnosed with PMR in May 2011. Reduced preds from 30mg to 10 but unable to go below. Now on steroid sparing drug Leflunomide prescribed by Rheumy in effort to reduce CRP and therefore reduce preds. After taking for 3 months CRP normal, but stiffness and particularly pain in the calves on walking has remained.

    Would be interested if anyone has had similar experiences?

    Can PMR cause acute pain in the calf?

    Has anyone be prescribed Leflunomide to aid in PMR?

    Many Thanks

    Swithin

  2. Pain as you describe is a sign of peripheral vascular disease and is called claudication pain - it makes you limp when you exercise and goes away when you stop walking.

    It is a symptom of the related illness giant cell arteritis when the abdominal and leg arteries are affected rather than arteries in the head and is found in some patients with PMR who have a more generalised arteritis.

    I'm surprised your rheumy didn't pick up on that - you did tell him about it didn't you? You need some tests which are done by the vascular medicine people - a different lot -and it can be treated although in later stages an op is often needed. I'm not talking of the top of my head here - it was my husband's specialist field!

    The main reason I suspect you couldn't get below 10mg is that you don't have simple PMR but a more general vasculitis involving more main arteries and hence the leg pain. Are you still on 10mg? Leflunomide is starting to be used in PMR but not very commonly - I think there is a study going on at the moment but I don't know much about it.

    Ask - and be persistent if the doctors are stubborn.

    Good luck, Eileen

  3. took the words out of my mouth intermittant claudication is definately a possibility carolk

  4. Thanks for this info - its very helpful.

    I told the rheumy last September about the pain in my calves on exercise he said it was ' typical of a claudication history rather than PMR'. He couldn't feel some pulses and there were no femoral bruits so he referred me back to my GP to have my Dopplers checked. This threw up some low readings and i consequently saw a vascular consultant who pronounced all normal. I also had a MRI on my lumbar region to rule out spinal stenosis. The rheumy said ' there is quite a lot of wear & tear ie osteoarthritis and disc disease, although there is no significant stenosis.However the disc disease does seem to narrow the lateral recess and possibly impinges on the right L2 nerve root. He decided it didn't require any surgical referral but may improve with some physiotherapy'. I have been seeing a physio since January and there is no improvement.

    I am still on 10mg but the rheumy not pleased when I had to go back up to 12 late last year & again earlier this year. He is very keen to reduce the steroids hence the Leflumonide. That has reduced the CRP to normal but I have all the PMR symptoms still. The rheumy says these are 'mechanical symptoms' and in relation to the calf pain, he feels 'this can't be explained from a vascular or a nerve root impingement perspective but could well be referred pain from the lumbar spine and should be managed with physical therapy & analgesia rather than a hike in the steroids'.

    The calf pain only started once PMR diagnosed. I had some symptoms which suggested GCA initially and underwent a temporal artery biopsy which proved negative. I have felt that over the last 12 months the calf pain has increased. So any further observations or comments would be helpful.

    Swithin

  5. In response to your question of calf pain, that was one of the major symptoms (although there were several others) I had prior to my diagnosis of PMR. The pain in my left calf was waking me up several times a night and could only be relieved when I would hang my leg down out of the bed. After many sleepless nights and concern for heart problems/circulation, I went to my GP. After many tests the only result was an elevation of my sed rate. GP referred me to a rheumatologist who diagnosis PMR and now being on Prednisone, I no longer have the pain.

  6. The needing to hang your leg over the side of the bed to relieve the pain is a typical finding in peripheral vascular disease - and if you had a generalised arteritis you could have similar symptoms. Taking pred would reduce the swelling in the artery walls and reduce that problem.

    If you have a generalised arteritis with GCA that hasn't reached the cranial arteries (in the head) a temporal artery biopsy won't show them - and that is only positive in about half of patients with GCA anyway. It isn't to be found in every cell, it can appear along one section but not in the next and it can be a very hit and miss test. It may be called the "gold standard" test but all that means is that if it is POSITIVE you have GCA. If it is negative it does NOT mean you do NOT have it. A simple concept you would think but most doctors appear unable to understand it.

    There is far too much confusion by doctors about the descriptors giant cell arteritis and temporal arteritis: you can have GCA without the temporal artery being involved. When it is involved it is getting very close to the blood supply for the optic nerve - and when that is reduced too much or stopped you can go blind. But you can have GCA in the big arteries in the abdomen and it can affect the smaller ones and reduce their size. Then that can lead to claudication pain when you are doing more with those muscles than the blood supply is capable of covering. It can be identified by imaging techniques and one thing we do need is abdominal/chest x-rays to monitor for large artery damage such as aneurysms. They are recommended in the Guidelines for diagnosis and treatment of GCA. None of us involved in these forums know of anyone who has had them until very late in their disease journey.

    I think your rheumy is using a load of large word to bamboozle you and try to stop you bothering him. Sciatic pain and claudication pain are different, well, they are for me and I've had both. There are some similarities sometimes but I have been told that bilateral sciatic pain into the calves is far less likely than pain from claudication issues.

    Eileen

  7. Hi Eileen

    I did have a chest x ray July last year done on the rheumy's instructions which appeared ok and he checked my 'autoantibodies/vasculitis screen'. No comment was made so assume these ok as well.

    My GP has had my Dopplers repeated which are essentially normal ( left ABPI of 1.03 right ABPI of 0.89). I have reduced the Leflunomide from 20mg to 10mg a day, and this last week has been much better except for the calves. I am still taking 10mg preds.

    The GP has now written to the rheumy requesting further guidance and asking my review be brought forward to discuss the benefit of Leflunomide and systemic arteritis following on from your input. My GP was quite receptive to your previous response, so this is enlightening by the look of it!

    Any further comments again gratefully received.

    Swithin

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