Hello

[purr6]

Hello Everyone,

First of all, let me say that I am extremely appreciative of the existence of this website. I was diagnosed with Wegener's in December 2009 and have found it difficult to find information about this disease even with the team of medical doctors that I have such regular contact with now. This website has provided me with soooo much valuable information, so I would like to say thank you!

I DO have a couple of questions. I have had numbness in my right foot since being diagnosed in December and was wondering if anyone else has this situation. While the numbness has improved somewhat, it is still an issue. Some of my doctors think it will resolve itself but have given me the rate of 1cm per month improvement and others tell me that it may never get better. Does anyone have any information or experience to share on this.

Also, I am presently being "weened off" of the prednisone (and I might add that it can't happen fast enough). My doctor has chosen to do this by lowering the dosage every other day. I began at 50 mg each day and then went to 50/40 (every other day), then 50/30......then 50/20..then 50/10 and am now at 50/0.......He will then lower the 50 dosage and keep the alternate day at zero. My question is, has anyone else every had this experience of lowering prednisone dosages? I am curious.

Thank you sooooo much and let's all keep trying to make lemonade out of lemons!

Purr6

[elephant]

Hi Purr6, No I never heard of that type of weaning. How are you feeling with that prednisone weaning? Purr did you start out with cytoxan? Are you on Cellcept, Imuran or methotrexate as a maintenance dose? Who is your WG specialist?
I personally have not had numbness but some tingling to the feet last year...it went away......shhhhh I hope the wegeners didn't hear that.

[purr6]

Hi Elephant,

Thanks so much for your response! I am feeling extremely "up and down" consistent with the prednisone weaning it seems. It seems as if I don't know which end is up with the extreme differences in how I am feeling. I am also on cytoxan and have been since being diagnosed in December--my doctor seems to feel it would be beneficial to be on the cytoxan for 2 years, but I am concerned with this and am going to ask for something else since the long -term effects scare me. I don't have a Wegener's specialist--I am not even sure if one exists in Ontario. I know in reading these posts, there are many available in the US, but unfortunately, I am limited to my rheumatologist.

I am glad that your numbness went away...and don't worry, your secret is safe with me from the dreaded Wegeners....LOL!

[elephant]

As you know Purr6 being on Cytoxan for two years is not good. Sangye and the others on this forum would agree, I think you need to contact the Vasculitis Foundation and see if you or your doctor can call a WG speicialist. When I was weaned down last year from prednisone the Rheumy started me with 60 mg for a month then 50 mg for a month, then 40 mg for two weeks, 30 mg for two weeks, 25 mg for two weeks 20mg for two weeks, 17 1/2 for two weeks, 15 mg for two weeks, 12 1/2 for two weeks, 10 mg for a month, 9 mg for a month, 8 mg for a month, ect till you get down to 1 mg a month. But I did not make it that far. I got to 5mg of Prednisone and I started to have sinus and ear problems so it was increased to 10 mg of prednisone a monthe, now I am doing a slower taper 9 mg for six weeks and so forth. Hope I did not confuse you.

[Sangye]

Welcome, purr. I'm glad you found us.

So wow, I really think you need to bring in some new help. I've never heard of alternating dosages like that. Usually they start alternating doses when you're down to 15mg or less, and it goes more like 15mg-14mg-15mg-- so a difference of 1 mg, maybe 2mg. I think the swing from 50mg to zero is unbelievably extreme. I know if I were doing that even for a week my Wegs symptoms would go wild.

I also think keeping you on ctx for 2 years is a sign that this doc is in over his/her head. Ctx is a very toxic drug with serious long-term risks. There's a lifetime limit to how much you can have. For those reasons, Wegs docs get patients off ctx as fast as possible-- aiming for 6 months or less. If the Wegs is still active at that point, they switch to a milder drug like imuran, mtx or Cellcept.

Please email or call the VF and ask for guidance on finding a Wegs doc in Ontario or consulting with one in the US.

[JanW]

Hi, purr6. How was your WG diagnosed? What are your 'classical' clinical symptoms (e.g. nose, throat, kidneys, etc.). I too am one of the Weggies suffering with my feet right now -- truly if my foot pain is related to my WGs (which I believe it is) it is my most significant (by far) clincical symptom. I had surgery for subglottic stenosis last month so I can breathe easy again, and I have a saddle nose which causes me no problem (except aesthetic ones of course). I have never heard of the taper you describe (though I hasten to add that I am not on pred), and what I've heard about ctx is anywhere from 3 to 6 months is what docs think is the safest course -- it is very toxic. I am currently on 15 mg per week or mtx, mostly because my symptoms aren't severe and neither SS nor SN track disease progression. Sangye is right -- it would be great if your rheumy could contact the VF -- there is much to learn.

[jola57]

Hi purr6, one doc in ontario is doing Weg research so should be a ble to tell you of Weg specialist in Toronto. Like JanW I have foot pain and also numbness. I had what is termed a dropped foot (look it up on the internet) and now have tingly feeling only, no real sensation in both feet. It has been like that for 3 years. There has been very limited improvement. Don't get discouraged, we are all different and some have totaly recovered their feeling in feet.

[Doug]

I had the foot numbness so bad it was like walking on bruises. If I stood still for a short time, I'd actually grow nauseated because of the sensation described. The condition continued from sometime before i was diagnosed in December 2003 until October 2007. Two weeks before I had a severe herpes zoster attack, the numbness in the left foot (never as bad as the right) was virtually gone and the numbness in the right was segregated to a small part in the instep. After the herpes zoster attack, the numbness returned to the right foot to levels nearly as bad as the WG stage earlier, but not so bad in the left. Two-and-a-half years later, today, I still have numbness in my right foot, though improved.

[purr6]

Thanks so much, Elephant for sharing your weaning process. It wasn't confusing at all--as a matter of fact, it was the process I was expecting. Sorry about the delay in getting back to you. My dosages have now been switched to 20mg daily and next week, I will be at 15 mg daily for two weeks. Can't wait to hopefully get to zero and I hope you get to zero soon as well!

[purr6]

Hello Sangye,

Thank you for your response and sorry about the delay in getting back to you. I am now at 20mg daily for the rest of this week and will be at 15mg daily for two weeks beginning next week. This happened after having an appt with my rheumatologist this past week. I also questioned the ctx and mentioned that it should not be for longer than six months. My rheumatologist is seeking the advice of my other doctors now and one is very strong on the opinion of being on it for only six months, so I hope that I will be on the right track soon. I will check the VF for a Wegs doc in Ontario, but at first glance, I was unable to see one on the list.

I greatly appreciate your good advice!