Wegeners-Nervous system attacked-feet swollen feet, dead fingers

1. Hannes 13 June 2012 at 13:23PM
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   I have been diagnosed with WG and am on the usual medication.

   WG attacked my nervous system. My feet are swollen and movement is painful. At night the swellings subsides but the moment I get up and move around the swelling flares up.

   My hands have also been affected. The fingers are dead, no feeling and no muscle movement possible - cannot use the left hand at all. The right hand I can still use but the skin feels numb.

   I have searched articles and discussion forums but nobody seems to have had this problem.

   Would appreciate feedback

   Hannes

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2. Wooden007 14 June 2012 at 20:32PM

   Hi Hannes

   Sorry to see you have WG and although its good to find someone with same sysmptoms its sad you have been caught out with it. When my WG started I had swollen feet, ankles, knees, hand knuckles, most fingers could not move or bend, wrists and elbows were painfull with movement but particularly when lifting oneself out of an armchair. As you have said the swelling in legs and feet went down overnight and were swollen as soon as I got out of bed. While in hospital last year I was on daily dose 80mg prednisolone steroids and swelling went down approx 4 days later, still had to have right knee drained due to fluid build up. Like you I could not grip things and lacked the upper body strength to even pick up a kettle. Steroids got rid of it the first time but same problem started again Jan this year gradually getting worse until admitted to hospital on 15 May 12 and was treated with 1000mg steroid infusion each day for three days, which got rid of most of it. I just have the occassion ache in the hands and knees. I was discharged from hospital on 23 May 12 as they started me on a 4 week course of 866mg of Rituximab used primarily in arthritis but works well against WG and kills all the B2 cells causing the problem but leaves you with no immune system for 6 months so important to take antibiotics and keep away from people with colds and wash your hands each time you handle things that other people have used. When discharged from hospital paperwork stated that the cause of all the joint problems and swelling was Sinovitis. Despite treatment I think the joint problem will return again. Rituximab was given to try and halt the many flare ups I have had with WG as Chemo and Microphenolate Mofetil have not been able to control it enough. Since the high dose steroid and Rituximab infusions my breathing has improved, unfortunately, I have been told that I will have to have either three stents or one shaped like a catapult inserted into the airway and am currently waiting for a date for that.I hope the above goes some way to helping you with yours. Let me know how you get on. All the best,Dave

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3. Wooden007 14 June 2012 at 20:52PM

   Hannes

   Forgot to mention, the second time I had the joints problem pain would start in hands and wake me up approx 0400hrs getting worse as morning progressed and would start to ease off from approx 1330hrs. swelling and pain would change on a daily basis and some days were better that others which left you feeling problem was getting better then it would come back. It took almost 5 months for someone to tell me it was Sinovitis despite seeing hospital consultants on several occassions and raising problem. Had force issue as had to take someone with me to see a hospital consultant as was unable to take shoes and socks off and barely walk, I was annoyed that nothing was done sooner but due to WG docs will do nothing without consulting others and the net for advice even though they are specialists in WG hence the long wait for treatment. All the best Dave

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4. Hannes 15 June 2012 at 10:29AM

   Hi Dave

   Thanks for a very insightful input. I would dearly like to take up a few issues in more detail with you which may not be of interest to this forum. Will appreciate it if you can confirm your email address to me at xxx.

   Thanks

   Hannes

   Emis Moderator comment: I have removed the email address as we do not publish these. There will be a Private Messaging service going live soon so users can communicate outside of the forums if required. In the meantime I will email Dave with your address.

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