Updates

[keegan55]

have not been on for a while. I have been battling with pain in the spine down the leg cyst on the l4 l5.. It is blocking the nerve root 95%. Causinglots of pain.. My pulmonologist feels I need to be on the methotrexate at least 6 months before havinG the surgery. problem is I will probably have to stay off of the methotrexate to heal.I still have occasional blood from the nose but the CAT scan was negative -.I do have a follow up appointment October 6 at Duke October 6thon the original surgery and diagnosis. I am taking way too many pain meds to deal with this nerve problem and I really do not want to get offthe methotrexate for fear that I The Wegners will reappear since I have not been on rx long
the doctor feels this Wegerners was induced by Enbrel. I am wondering if this problem with nasal will eventually show Wegners. I am so tired of all of it .

[Jaha]

I am so sorry that you have been having such pain and now have to have surgery. This disease just keeps on giving, it sucks. Best wishes to you with your appt. Did a Wegener's doc put you on Enbrel, just curious? Keep your chin up!

[me2]

When Enbrel first came out years ago my doctor put me on it thinking it would treat the Wegener's. I was on it over a year and paid for it out of pocket because my insurance would not pay for it. I forget the events that led to me getting off of it and what I switched to but I do remember there was a study later on using Enbrel for Wegener's and it was found to be totally ineffective.
I have not heard about it actually causing Wegener's or causing Wegener's relapse. That doesn't mean it doesn't of course, it just means I haven't heard of it.
I would be concerned too about blood in the nose and that you keep on some treatment for Wegener's.

I have had a lot of serious things go wrong but I haven't had the nerve problem like you are having. It sounds very miserable. I hope you get some relief soon and can ease up on the pain medications. I know when I have taken lots of pain medications I had terrible constipation. If it wasn't for a Senna and Dulcolax combination I don't know how I would have coped.

Am I understanding correctly that you are on Rituxan? If so , how many courses of treatment have you had with it?