Hi everyone,after a recent MRI on both my legs I have no major arteries from half way down my calves.This is the result of vasculitis,my vascular consultant informed me they are inoperable.
I suffer with calf cramps after walking 150 meters,if I stand for a couple of minutes I can proceed.
Has anyone suffered similar problems?
This is something called peripheral vascular disease, specifically peripheral arterial disease. Many smokers and diabetics suffer from it but there is also a fairly high risk of someone with vasculitis going on to develop it because the vasculitis damages the inner lining and reduces the diameter of the artery over time so that the blood flow to the muscles is reduced. This reduces the nutrient and oxygen supply to the muscles so that when you want to use them more the supply is not enough - hence the pain after walking a short distance which is called intermittent claudication. You rest a bit and the oxygen supply catches up and you can go a bit further. It is nicknamed "the window-shoppers disease" - you walk from one shop window to the next, then you can rest a bit while studying the window display, rinse and repeat.
Often you can increase the distance you can walk by exercising and you should have been told how to go about it: you walk as far as you can and rest a bit, then walk a bit more - by walking as far and fast as you can 3 times a week you can improve the distance quite a bit over 3-6 months.
This is a good article:
circulationfoundation.org.u...
and so is this one
vascularweb.org/vascularhea...
which actually provides a walking programme suggestion in case your vascular consultant didn't say anything about it. When you walk over a longer period things often improve because something called collateral circulation can develop - other smaller blood vessels develop to form a diversion so blood gets past the blockage and supplies further down the road, so to speak.
This one is also very good in that it warns you about things that should send you back to the doctor
vascular.co.nz/intermittent...
but do please remember the bit that the severe stages are rare - you are nowhere near needing drastic surgery but if you get cold feet and legs or your toes become discoloured don't put off going back to the doctor.
Did he suggest you taking low dose aspirin or any other medication? Some people find the medication is worse than the problem - but the low dose aspirin is supposed by some experts to reduce the risk of heart attack and stroke in vasculitis patients.
But remember - it may hurt a bit but walking is the best thing you can do, aiming to increase from about half an hour to nearer an hour with training!
Many thanks for your reply,I have had cold/white feet earlier in the year but at present they seem better.I was told to walk up to the cramps to aid my recovery, I will read the links to help with this.thanks
I have just started on stations, the aspirin isn't possible because back in may the vasculitis caused 4 small strokes,3 clots and a bleed so they couldn't thin my blood.
I feel more optimistic after reading your reply.Thank you
It is all scary I know but like anything you get familiar with things. Keep those feet warm - good excuse for a warm pair of socks and winter boots for later!
It was my husband's special field when he worked in the NHS and I worked in the vascular lab for a while too - met lots of people like you.
All the very best.
Thanks for the Vascularweb link PMRpro. Don't have PAD, but I do have problems with my feet and lower legs due to rheumatoid vasculitis.
Hi, yes I have this. The doctors managed to unblock one leg (blocked at the thigh) but the other was inoperable. I was told to walk through the initial pain if possible to encourage new veins to develop and carry the blood flow past the blockages. Don't overdo this or you'll be in pain for days but gradually walking further does help a bit. I can walk a way on the flat now but haven't managed a hill without a big struggle!
Exactly my symptoms (along with very sore shoulder, hip, and knee joints) when I was diagnosed with polyarteritis nodosa (PAN). I was given large intravenous doses of both steroids and cyclophosphamide (I think) which allowed me to lift my arms above my head for the first time in 18months, and bend my knees to a crouching position. I then went for a course of six I.V. doses of cyclo. at two or three week intervals. Although I do still suffer from aching calves when walking up hills or trying to walk fast and push for speed, I am able to walk fairly long distances (5 miles) at a moderate pace. When walking up very steep hills I still have to stop every 20-30 yards for a couple of minutes to allow my calf muscles to recover. After the initial doses of cyclo and steroids, I gave myself weekly injections of methotrexate for about a year, then went on to a dose of 15mg methotrexate orally per week, which I still take, and have been reducing my dose of steroids (prednisolone) down from 40mg by 5mg, then down from 10mg by 2.5mg to 5mg where I stayed for some time, but have now been cautiously reducing this dose, under advice from my rheumatology consultant, by 1mg every 3 months. Now down to 2mg per day. The only other thing I would say to you is that I had one single blood test (whilst we were looking for a diagnosis) which indicated coeliac disease. I never got another positive test either in blood or from a stomach biopsy,however, I have stayed faithfully gluten free for four years now, and also have not drunk coffee (occasional decaff) as I found it instantly made my joints ache. I think I might have identified the trigger for my vasculitis, but I know it may also have been a virus, as I have memories of when the aching joints started very acutely.
Ask yourself if you have any memories of bad viruses, or any food or drink or things that you get a bad reaction to. Our bodies seem to be telling us they're at a tipping point, in my opinion. I think it helps if we stop dosing our bodies with things they can't cope with. By the way, I was also found to have something wrong with red blood platelets (smaller than usual, apparently) and a vitamin D deficiency. Vit D deficiency easily solved of course, but could be something to watch. It's common, apparently.
A surgeon did look at my leg arteries again last year, and told me they maybe could do an angioplasty procedure to try to open some pathways, and perhaps a bypass on the worst bit, however, the risk of failure or making the situation worse as it was explained to me was too high for me to consider it, as I have fairly good mobility now, as explained above. I have even been able to dance, which was not possible for a long time.
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