Tingling feet

[Carol]

Hi everyone
My tingling/numb/burning feet (Mononeuritis multiplex)have continued to be a big problem - probably the only problem except for tiredness two months after being diagnosed. The rheumatologist has decided after neuropathic testing(electric shocks through the nerves) that I need aggressive therapy. So I am to have IV cyclophosphamide treatment every 6 weeks to try to improve my feet. A bit scarey. Has anyone else had this nerve problem? I'd love to hear from you anywhere in the world. My other medication is Prednisolone and Imuran.

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carol, I Also Have The Same Feeling In My Feet Since Coming Out Of Hospital With W.g. 5 Months Ago, I Was Told It Would Take Several Months Before It Might Get Better. So Yes I Do Now What You Are Going Through. roger.

[jola57]

I too know the feeling, I was diagnosed with WG November 2006. Given prednisone but not treated aggresively until a year later. In may 2007 I developed a dropped left foot with neuropathy of both left and right foot. After being given cytoxan for 6 months my feet are better, dropped foot is gone but neuropathy is still there. Total recovery is unlikely (but hopefully possible) Good luck with your feet
Jolanta

[Trish]

Hi Carol
I have suffered the same feet problems as you. Unfortunatley I had 6 months IV cyclophospamide and that was when my feet problems began. Cant say whether it was the cyclo or just wegeys taking a hold at the time. I have finished with Cyclo treatment and they have now put me on methotrexate which I have once a week. A matter of taking 5 pills at home. No side effects so far and my feet are a bit better. I can now wear nicer shoes to work and dont limp all the time. I have also had a traceotomy a couple of months ago as I found it too dificult to breath but thats another story. In a message to Lucy, Andrew mentions a drug called Lyrica for his feet problems so will look into this. All the best Carol and if you do have any success with your feet I would love to hear about it. Im looking forward to those long walks and bike rides that I used to do before my breathing and feet let me down.
Kind Regards
Trish

[RCOSSIO]

I too had the burning sensation and tingling feeling in my feet. I was given Lyrica 3x daily 50mg each and Vitamin B12 1x 100mg in June 2008. I was taken off Lyrica completely after 1-1/2 months...the feet felt fine except for some numbness, however nerve damage does takes time to heal...at least a year.

I am back on the Lyrica 1x daily for the nerve pain in my right ear.

If you can get Lyrica prescribe to you that would be great. The Vitamin B12 you can get over the counter.

Hope this helps!

[Trish]

Hi Rcossio
Thank you for that info, when I spoke about it to my rheumatologist he would look at me blankly as if I was the only one who suffered it! I have an appointment at the end of September with him so I will take your info and hopefully he will prescribe it for me. How long have you had never pain in your ear and has it caused any deafness?
I hope this isn't another of those ailments that us WGs patients have to look forward to.

Kind regard
Trish

[ian anderson]

yes i had this symptom the first sign of my wg actually like walking on broken glass prednisone did the trick we will speak agn

[Doug]

I almost was over this sensation, came down with a severe case of shingles, and the condition came back, if not quite as bad as it was at first in 2003-2004. I've noticed too that worn shoes can aggravate this condition. The inserts in a pair of safety shoes I wore until recently were worn. The nerve issues in my feet- the burning, the numbness- improved drastically when I retired the worn shoes.

[wgrebel]

I lost the feeling in my right foot pad because of Wegener's. I am in remission now but I still have no feeling in the foot pad of my right foot. One of the places the WG manifestied itself when I was being attacked was my feet. The vasculitis turned my toes black and I eventually lost a toe on each foot due to the disease. Only one toe was effected on my left foot which was later amputated. Three toes on my right foor turned black due to vasculitis and thankfully two of them healed. I lost one on my right foot because of the vasculitis that had to be amputated. My right foot still tingles. Doctor's have informed me the tingling means blood vessels and neurons are healing from the WG and that in time the feeling will return. It has been seven months since I lost the feeling in my right foot pad. Once remission was declared the tingling was not as bad but the feeling did not return. I developed a case of Shingles last week on my right leg which has since made the foot pain MORE INTENSE. When the shingles flair up my foot flairs up. I was placed on neurontin 3X a day and percocet 4X a day for the shingles pain & that has helped. The neurontin helped more than the percocet. See if you can get some neurontin. It will help.

This is a question for Richard above. You have been taking Lyrica. Please if you do not mind, give me a complete rundown on how it worked for your feet from start to finish. I have been begging my rheumy for some lyrica for my feet and he will not prescribe it for me. I am also going to ask my WG Specialist about it. The only way I was prescribed neurontin was because I developed shingles. Neurontin has helped my feet and the shingles but if I am looking at another five to six months of foot pad numbness/loss of feeling I want some relief. My appt with my specialist is June 7.

Thanks from Mississippi
WGREBEL

[wgrebel]

Doug,

I developed shingles last week & I have to say it is some of the worst pain I have ever felt. Mine are on my right leg. The WG has damaged the nerves in my right foot and when the shingles flair so does my foot. The pain in my foot has returned (see above post) & the swelling has returned. My foot goes from nothing--to pain--to tingling--to a squishy/mushy almost like I am dragging my foot around and then back to nothing. How long did it take you to get over the shingles and did your specialist think it was WG related?

Thanks,

WGREBEL