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

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

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

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.

Hi Hannes,

Just read your account whihc I believe was posted over a year ago.  I have only just been diagnosed with WG just over two weeks ago but have been suffering intermittent pain and swellings in joints for over two years.   Twelve months ago went on to develop severe sciatica, rhinitis, sinusitus, loss of hearing in both ears resulting in grommet insertion which has helped.  Approx 5 weeks ago I experienced a lot of numbness and some tingling in my foot which seems to be similar to your experience - its really very uncomfortable but not the chronic pain I had with the badly swollen joints.  I am just wondering how you are feeling now, and am really hoping to hear that you may have had a lot of improvement.

Would appreciate hearing from you or anyone else experiencing similar symptoms.  Any advice would be appreciated.

Ann 51793

Good to read you have improved. It certainly takes a long time to see change with this condition. I have had a tingling/numb/cold and very sensitive left foot particularly the toes on and off for for a while which seems to be reducing. I have found that taking Ibruprofen 400mg pain relief tablets during a 24/48hr period gets rid of the pain and inflamation caused by Sinovitis. I also found that wearing a sock on my bad foot while in bed helped to stop the the irritation caused by bedding helped. The sock must NOT be tight fitting but should fit comfortably. Ibruprofen helps reduce inflamation but only for a short period, week or so. Some time ago I mentioned possibly having a Stent inserted into the airway, this was finally done July 2012 whereby an 80mm long tube was inserted. Unfortunately, it just made things worse and it had to be removed in March last year as it had broken and moved, the rest I will leave out. Due to Chemo treatment in 2011, I had a second Cystoscopy two weeks ago and was given all clear. I had my last Rituximab and 100mg steriod infusion last week and my consultant is happy with progress, none the less I still have another two years of hospital monitoring to go.

All the best

Hi, I've diagnosed WG 4 years ago, history of ENT issues. In the last 6 months I've had several episodes of my feet swelling badly, it's freaked me out a bit bit walking and ibuprofen seem to work as well as predis.

My ankles and wrist and elbows and fingers have done this before hurt but i have read it can cause joint pain but my dr acts like its not from wengers which i think it is. Last about 3 days and got better

Really interested in this thread, reassuring so many of us have similar issue which I swear is WG related, although my consultant says it's not.

Tips on ibuprofen helped me a lot so thanks.