Pmr

[Hours]

12 months into Pmr started with leg claudification, wondering if anybody else has this problem.

[SnazzyD]

Hello, has it been diagnosed as such or do you mean you have symptoms like it? Others here will have had it connected to PMR if the arteries are being narrowed by the action of inflammation in PMR. It can also be caused by things like atherosclerosis so knowing what the cause is is important.

[Hours in reply to SnazzyD]

Thanks Snazzy D, Guess I should go back to doctors, Looking like it’s inflammation caused by Pmr. It does improve at times. I am down to 4 mg pred a day and coping okay, not saying I am pain free, but doing okay,

[PMRpro Ambassador]

There have been a few people who have developed peripheral vascular disease and that can cause claudication. If you have the symptom, your GP needs to carry out some basic tests such as looking at the ratio of your BP in arms and legs and the pulses in your feet. If they are not normal, then they need to refer you to the vascular unit for further testing to work out why it is happening.

How far can you walk without developing calf pain? I assume it is still going away when you rest?

[Hours in reply to PMRpro]

Hi Pmr pro, I have had all these test and came back okay,

[PMRpro Ambassador in reply to Hours]

Is it claudication causing the pain then or is it maybe an achilles tendon problem?

[Hours]

Pretty sure it’s not Achilles’ tendon, feel like it’s connected to Pmr,

[SnazzyD in reply to Hours]

Can you describe the pain and say what makes it worse and what eases it. Also, are certain times of day or activities significant?

[Hours in reply to SnazzyD]

Only when I walk especially up hill, stops when I rest, doctor sent me for all the test, came back ok, always been fit never smoked, been well till Pmr started, January 2020 started pred June 2020. Had some jaw discomfort, never had a headache.

[SnazzyD in reply to Hours]

Where is the pain in the legs? What made you feel it was claudication rather than just deconditioning, muscle wasting from Pred and general autoimmune condition fatigue?

[Zebracorn]

Hello Hours. I had leg claudication which led to the diagnosis of GCA (giant cell arteritis) in 2019 but more specifically large vessel GCA , or LV-GCA. Diagnosis of GCA confirmed via temporal artery biopsy but also had PET scan, CTA scan, ultrasounds... it was a long road which started with an ignorant primary care doctor who wasted lots of times trying to convince me I had a virus and just need to hydrate (oversimplying here but you get the picture). She finally sent me to a neurologist to rule out spinal stenosis. He eventually ordered an ABI test of my legs which showed block arteries. He sent me to a vascular surgeon with the diagnosis of atherosclerosis / peripheral artery disease. I had to convince them it wasn't that. I told them I thought it was a vasculitis (after doing my own web research). I was right. It's been a long road of treatment and tests. Now I am just trying to get off the steroid but I got a PMR flare when I got off. Please get it checked out.

[Blossom20 in reply to Zebracorn]

So what was the treatment once they had agreed with you that it was vasculitis? And what exactly is that and how does it differ from PMR which my Gp described as vasculitis when I first got it. What are the symptoms? Thanks.

[DorsetLady PMRGCAuk volunteer in reply to Blossom20]

GP was correct… definition of vasculitus-

Vasculitis is an inflammation of the blood vessels. It happens when the body's immune system attacks the blood vessel by mistake. It can happen because of an infection, a medicine, or another disease. The cause is often unknown.

Vasculitis can affect arteries, veins and capillaries.

LV - GCA means it affects the larger vessels usually within the torso, whereas in PMR it affects the blood vessels surrounding the major muscle girdle.

See picture attached to reply Hours below -

[Blossom20 in reply to DorsetLady]

Thanks. So what is the treatment for LVV? Higher doses of Pred?

[PMRpro Ambassador in reply to Blossom20]

Depends what sort of vasculitis Sometimes it is higher pred but often once it is under control it is the same sort of dose as for PMR.

[DorsetLady PMRGCAuk volunteer in reply to Blossom20]

As PMRpro says depends...Cranial GCA certainly initially to protect again sight loss..

[Hours]

Hi Zebracorn, Thanks for your reply, I thought GCA you had headache which I have never had, excuse my ignorance but is GCA the same asLV GCA, all very confusing

[DorsetLady PMRGCAuk volunteer in reply to Hours]

You can have cranial GCA (used to be referred to as Temporal Arteritis) and Extra cranial GCA aka LVV - see picture for overlap

GCAPMR overlap

[Zebracorn in reply to DorsetLady]

Thanks for the interesting diagram. My LV-GCA which is referred to as extra -cranial GCA in the diagram was all over, all the ways even in my feet, seen via PET scan.

[DorsetLady PMRGCAuk volunteer in reply to Zebracorn]

Okay that's interesting to know…..

[Rugger in reply to Hours]

I had PMR for 4 years before starting with similar symptoms in my legs. My Rheumatologist arranged a PET-CT scan which showed that I have GCA-LVV, like Zebracorn. Could you ask your GP to refer you to a Rheumatologist?

[Zebracorn in reply to Hours]

Hi Hours. GCA usually does start as a headache. Mine actually did but 3 trips to my PCP she just chalked it up to a virus. I saw another doctor when my PCP wasn’t available and she implied I was looking for narcotics. ( when actually I was just looking for answers). Eventually the headache went away but I still felt lousy and dragged myself through work and life in n general. 2 months later the leg pain started when I ran ( I used to be a runner). I stopped running thinking I had an overuse issue. Then 2 months later it started to happen just when walking. My f****** PCP said I was dehydrated but I insisted on a referral somewhere. She sent me to a neurologist. Then he sent me to a vascular doctor who then sent me to a rheumatologist. I think I am repeating myself. So it was 6 months since the headache that I got diagnosed but didn’t make the connection right away with headache since I thought the leg symptoms were the start of it. It’s been 3 years since that headache and I still get very angry that my doctor was so dismissive. It she had just done some blood work back at the headache starting point perhaps I wouldn’t have permanent artery damage in my right leg which prevents me from running. The GCA was confirmed via temporal artery biopsy 5 months after the headache subsided. Thanks for letting me vent. I don’t know if any of that is helpful. My biggest takeaway is advocating for yourself. LV- GCA is GCA , just more extensive.

[Blossom20]

Hi, I had the same as you - legs were fine in the beginning, but when I got down to about 6 I started the same problem - pain in hips and calves when I walked, then had to stop and it went away until I started walking again.Pmrpro suggested I had the tests at the doc - I did and she said all was normal. But it's still there but slightly better.

[Hours]

Thanks for all your replies really helpful