Tingling feelings: Finished 10 cycles of cyclo... - Vasculitis UK

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Tingling feelings

DBH1969 profile image
6 Replies

Finished 10 cycles of cyclo, remained on 10mg preds..now on 100mg aza...been on aza 6 days starting to get tinging feeling on my hand and feet not sure if is good or bad? Any of you experience same?

I have WG, got appt with consultant in May, just wonder if I can wait till then or see her sooner?

Diane

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DBH1969 profile image
DBH1969
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6 Replies
luggsey profile image
luggsey

My Mum had tingling in her feet, hands and tongue when her vasculitus first became active. We think it was the vasculitus damaging the blood supply to nerves.

Prudencepig profile image
Prudencepig

I have been diagnosed with PAN and finished 9 chemo and now still on 10 mg of steroids and started aza so very much the same. I also have tingling in mouth hands and feet since starting them as was a little worried however u have reinforced to me that others are feeling similar things. I do however feel better in myself and managed some gardening at the weekend so a small price the tingling.

Hope u feel better soon

JimWright profile image
JimWright

Hi Diane, I've got WG, I have been on Az for over 6 months and get terrible tinglings in hands and fingers, have seen the docs and have even had neuro tests but it just seems to be something we have to put up with. You do get used to it eventually, but it is a nuiscance to be honest but woth checking out with your consultant. Hope that helps. Jim

DBH1969 profile image
DBH1969

Thank you guys, I will mention this to my consultant....I though it could be the preds along with aza, as when I was on high doses of preds 6 months ago both were very tingling I mentioned this to the consultant she lowered the dose then it got better.

I have put to one side it doesn't stop me from doing things I enjoy..been walking 4 miles today now feet really tingly! Hehe..

I'm hoping to come off pred in may as I'm feeling better and carry on with aza.. really need to shift this weight I gained :(

Diane

Derek profile image
Derek

Having CSS and subsequent tingling hands & feet since diagnosis, I have been prescribed Pregabaline by my consultant, which eases the feeling but doesn't get rid of it. The tingling is more apparent after prolonged activity, like you walking 4 miles DBH. I agree with JimWright that it is something we have to live with. Prior to having a relapse, I noticed that I had lost the tingling in my feet & lower legs. Initially I welcomed getting rid of the tingling but now regard it as a function of maintaining the status quo. At least I know blood is getting as far as it can :)

I have tingling/ numb pain in hands and feet, it's worse at night. I find the hand tingling can come on during the day, like today when I did a fairly strenuous ( for me ) walk up the local glen. Amitriptyline at night helps, it doesn't get rid of the pain but usually enables me to fall asleep. I am awaiting nerve conduction studies and am going to try Pregablin soon. I don't have a definitive diagnosis, am on MTX and pred. Most of the time I can cope with it as long as I get a good nights sleep!

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