New here, but diagnosed in 1992, Rituxan, Dr. Langford

[aewaustin]

Hi there! Well this will be a doozie for a first post. I was diagnosed with Wegener's via kidney biopsy in 1992 (was 21 years old) with vasculitus, sinus involvement and kidney involvement (was losing 20% function a month). At the time the disease was very aggressive and was treated successfully with cytoxan/prednisone and then imuran/prednisone and achieved full remission in two years. I was in full remission until 2003, and since then (now I realize) it has been active, but not enough to be on any meds. In the second 1/2 of December 2010 it went full blown again. The first 1/2 of December I did two half marathons, and then by the end of December I could barely make it through the day. I again have sinus and kidney involvement, but this time instead of vasculitus with spots on my legs I have leg pain. So am going rounds with the different docs and currently am on 100 of imuran and 20 of prednisone. I am making it through the day, better than with no meds, but my UA's are showing now 3+ blood (no protein yet though and kidney function is still ok) which has gone up over the past month while taking imuran. So it is not working...

I have been checking out all the posts here, and taking the advice about getting to a major center, so next week I am going to see Dr. Langford at Cleveland. Have seen some of the posters about her, feel like I am going to see the wizard who can make everything right in my world again BTW I am not a patient person and I realize this, just want to get this into remission so I can get back to living, my medical friends tell me that I am a horrible patient, but am working to be better. In the middle of December I was on track to do the Austin Marathon, that was yesterday, and super disappointed that my activity stopped dead at the middle of december.

In researching it seems that Rituxan is a miracle drug and am wondering if anyone has gone on that after being in full remission, and before having to go through oral cytoxan. Been there done that on cytoxan and would love to avoid it if at all possible, although thankful that I have a drug that has worked for me to put me in full remission.

Would LOVE to hear everyone's thoughts on my situation. Really hard sitting here waiting to see Dr. Langford next week. Even as I write this I feel guilty because reading everyone's stories are so heartbreaking, this disease is so hard and I have only been dealing with it for two months now, but for those that just can not get it into remission my heart goes out to you.

Anna
Austin, Texas

[elephant]

Hi Anna,
Welcome! Don't feel bad about see Dr Langford, you need to see a Wegs specialist. Things can turn around fast in a heart beat.
I laughed when you said you feel like your seeing the Wizard. That is what I said to my family...I'm off to see the Wizard, the wonderful wizard of all. You will like her and she is very good. Keep us updated.

[Sangye]

Hi Anna, welcome to the group! It seems odd that they're treating you with imuran since you have kidney involvement. Usually that means a stronger drug (ctx or rtx) is in order. But you can trust whatever Dr Langford tells you. Glad you're going.

[aewaustin]

Elephant - Thanks! Do you have a feel for the treatment protocol she likes? Do she use rtx?

Sangye - You are right it is odd that I am on Imuran first Reason is that I have only been to a kidney doc yet, and that is all she would do, which considering she is a kidney doc is probably the right decision since the kidneys are not losing function, yet. Am praying that by going to see Dr. Langford I can get on something like ctx or rtx to put this into remission again, and hopefully for a good long time... Curious to see if you have any more comments about rtx and how hard that is to get. I think that is what you are on, and seems like you really struggle with it (I am so sorry) but hope in the end it is working for you.

To both of you, thanks for all the help you give here. Over the past week I have found this site to be a godsend....

[Sangye]

Anna, yes I'm on rtx. (I've also been on ctx twice) Rtx is becoming easier to get. If Dr Langford wants you on it, she'll know exactly how to get insurance approval for it.

Since your kidneys aren't losing function, it does make sense that your docs would want to try imuran first. I don't know if that's what a Wegs doc would do, but I see the logic.

You might take heart to know that Dr Seo (JHU) once told me that it was easiest to get a Weggie into a solid remission if they only had kidney involvement (vs kidney plus lung, or lung only). He actually said it was "very easy" and that ctx worked well. He uses rtx conservatively and still prefers to use ctx, since the long-term risks are well-known. Of course, the Wegs specialists' opinions continue to evolve as rtx is used more widely in Weggies.

I've noticed a number of people on here who had solid remissions for a long time with ctx, and achieved remission quickly again using ctx. That "fast-on, fast-off" type of disease activity amazes me. I wish it could be studied and the mechanism understood.

[aewaustin]

Sangye - Thanks so much for the info! Makes me feel better to know that Dr. Langford really will be able to help. I do feel fortunate that in the scheme of things it was easy for me to get in remission, and stay in remission for years. Hoping I have the same experience this time, praying... Next week I just want to get on the meds, other than Imuran, so I can start the process of trying to get into remission. This time I do feel something going on in my lungs though, since I did not have lung involvement the first time not really sure what is going on, but have little pains and my chest just feels compressed sometimes. It is weird, just harder to breathe. So I hope that this new detail will not make it harder for remission...

[elephant]

Hi, no I was not put on RTX or Cytoxan. She has me on Cellcept 2000 mg and I have been taking cyclosporine for the kidney transplant. I take prednisone and bactrim too. I still have sinus issues, but I can't complain. She will do what is best for you, glad your going.

[aewaustin]

Had a great visit! Dr. Langford is amazing, so relieved after seeing her. Am going to work with my doctor in Austin to get RTX, have an appointment with her next week to discuss and then on to the insurance hurdle. Praying that I do not have too hard of a time getting it approved through Aetna, really want to get started.

[Sangye]

That's great news.

[elsawind]

My husband tried RTX in May 09 and Nov. 09 with Methotraxate. It did not work. Tried Citoxan, Cyclosporine, Cellcept, this last one gave him a bone marrow failure. Mid Feb. was hospitalized in Mex. while on vacation, treated first as pneumonia but ended up being an acute case of WG. The doctors tried with 1.5gr of prednisone + albumin for three days, but did not work. Had a transfusion and since he already tried RTX this doctors gave us the option to try Remicade. He had two infusions and the next one will be on May 10. In the mean time we came back to Los Angeles and he ended up in the hospital again March 17 and was discharged on the 18th, lots of tests, and confirmed what the mexicans doctors diagnosed. He has a perforated septum and he was so week this last month that could not do the flushings property and lots of crusting was form. A couple of days ago the ENT removed a lot, but his throat is killing him. Got 30,000 units of Procrit that will help his blood count. Does anybody tried Remicade? We are living this nightmare since 2003