any info appreciated: i started of with some... - Vasculitis UK

Vasculitis UK

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any info appreciated

minka profile image
8 Replies

i started of with some ankle pain that spread to my knee now i get cold feet and ligaments that apear not to be working properly in both ankles and knees my feet go cold and are clubbing at the ends of the toes

Also the bones in my feet feel like they are numb and sore when trying to walk on them. They used to go red raw at firts now just cold and numb.

i have had vasculitus befor and it just whent away now i seem to have got it again after i have been stopped taking predistone which was only 5mg per day

regards john

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minka
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8 Replies
Nadine99 profile image
Nadine99

I don't know anything about this but it seems like a visit to the doctor is due or contact the specialist that dealt with your Vasculitis.

minka profile image
minka in reply toNadine99

put somthing else up that appeared in 6 hrs under heading picture this

Suzym2u profile image
Suzym2uModeratorVasculitis UK

You need to see a Rheumatologist , please ask your GP for a referral. You don't say where you live. Vasculitis dies not "go away" but it can go into remission. Any reoccurring symptoms or new symptoms should always be investigated promptly. Have you contacted the VUK helpline , here is the link either John or Lynn will help with advice. vasculitis.org.uk/helpline

JanetR profile image
JanetR

Tell your consultant. Sounds like blood supply not getting through. I'm experiencing very similar after tapering steroids down to zero in February. Sometimes feels like I'm walking on my bones, no padding. Toes go numb. Both Achilles tendons get sore, as well as calf muscles and knees. Legs fairly week and not sustaining longer walks. I suspect my inflammation count will be up on last blood test - have you had one done recently? I haven't had results yet.

minka profile image
minka in reply toJanetR

HI JANET HAD BLOOD NOT SHOWING ANYTHING WHICH I FIND HARD TO BELIVE AND YES MY FEET FEEL LIKE I AM WALKING ON BROKEN BONES IN MY FEET AND THE TOES KEP GOING COLD THEN RED.

I DID A LONGISH WALK WELL FOR ME IN THIS CONDITION YESTERDAY BUT FEET WHENT AQLL RE AGAIN LATER ON AND SORE are yours like this NOW THEY ARE ITCHING UNDER MY KNEE CAP.

HOW FAR CAN YOU WALK ON YOURS ? iM ALSOGETING SOME VIBRATIONS DOWN MY RIGHT BETTER LEG AND HUMMING IN MY EARS NOW.

I HAVE COME OF STEROIDS PREDISTONE AND AM WONDERING WEATHER IT IS THIS they tested my pulses in my legs with the doppler at last podiatry appointment and ther was pulses so i cant understand the toes doing this at all.

minka profile image
minka in reply toJanetR

Had my feet tested today good blood flow but it still feels like I'm walking on Brocken bones like you in feet so I'm resting today bad night with sweating last night told it can be nerve damage through your knees you got knee problems at all this may be it

JanetR profile image
JanetR

Sorry Minka, I've got no answers - I'm seeing my rheumatology consultant in September and was going to talk to her about this. I can walk 2 or 3 miles before it gets bad, but it varies. Some days it's bad straight away. Toes can seize up, but as soon as I rest and take shoes off and massage a bit they come back. I put my feet up, because I do get swelling round the ankles fairly routinely. If I get any answers in September I'll post. For me, day to day, it's generally not bad.

Muppet1234 profile image
Muppet1234

Ages ago I was taking 20mg prednisone.. it did help my vascalitus....

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