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View Full Version : New here, but diagnosed in 1992, Rituxan, Dr. Langford



aewaustin
02-22-2011, 06:39 AM
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
02-22-2011, 08:19 AM
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.:biggrin1:

Sangye
02-22-2011, 03:01 PM
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. :smile1:

aewaustin
02-22-2011, 10:57 PM
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
02-23-2011, 02:16 AM
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
02-23-2011, 02:28 AM
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
02-23-2011, 11:20 AM
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
03-05-2011, 04:53 AM
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
03-05-2011, 10:47 AM
That's great news. :thumbsup:

elsawind
03-21-2011, 06:41 PM
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

aewaustin
03-22-2011, 12:29 AM
Elsawind, So sorry to hear about your story, sounds horrible. Where is he getting treated? Have you been to one of the main vasculitus centers? I am not familiar with Remicade, but others on this forum are much more knowledgeable about the medicines. Best of luck to you!

Sangye
03-22-2011, 01:14 AM
Hi Elsawind, nice to meet you. Your husband has sure had difficulties. I also wonder if he's being treated at a major vasculitis center. I can't imagine anyone else would have a clue about his treatment at this point.

As far as infliximab (Remicade), I asked Dr Seo (JHU) about it this month. He said the anti-TNF alpha drugs are not looking good. They had a lot of hope that it'd be useful with severe refractory (ie unresponsive) Wegs. As they've done more research they're not seeing what they hoped for. Yet another reason why I suggest your husband consult at a major center. If Remicade truly is his only option, at least they will give you the statistics and not leave you in the dark wondering.

elsawind
03-22-2011, 02:16 AM
Hi aewaustin and Sangye thanks for your comments
my husband went to the Cleveland Clinic, UCLA, Kaiser Sunset, Kaiser Harbor City. The reason we are trying infliximab is because the data suggest that infliximab may provide an effective and more specific therapeutic option in the treatment of active WG refractory to standard treatment. We know that it was tried only on a very small group of people, the studies i have is only 6 , one had infections, but the other 5 experience remissions, so we thought it was worth to try it. I have my dobts after reading your post. My husband's case is out f the book and the worse part is that is refractory to any treatment. Here in LA they want to try again with Rituximab but as you can understain we do not have much hope since it did not work before. At the moment he is on 50 mg of Prednisone per day. Last year he could go as low as 30mg but needs more and more as time goes by. Any chemical he takes lowes his blood count to the point of bone marrow failure, even antibiotics. On the positive side, he has an unbelievable determination to fight and has my support and the family. He has won many battles, he will lose the war but hopefully he will win a few more. It is very sad to see him deteriorate so much.

Sangye
03-22-2011, 03:30 AM
Elsawind, I agree that if infiximab is his only choice there's a chance for him to be one of the few that it helps. Why not, right?

Just curious-- when he did rtx did they do 2 or 4 infusions in a month? Did he improve at all, and did they re-treat?

elsawind
03-22-2011, 04:53 AM
Sangye, in April 09 he had two infusions, in Nov 09 the doctor decided to do it in 4 infusions, and statrted with Methotraxate. No improvement, Prednisone at 60 mg most of the time, the Mtxe discontinue, lab tests too low. No way to start again with citoxan. By Oct. a biopsy done on something that we thought it was vasculitis and turned out to be a rare type of cancer, sebaceous carcinoma, it turned out to be very challenging the reconstruction and in order to not to interfere with the healing he only rely on Prednisone, but had that set back in Mex. where WG attacked on a very aggressive way. If you do not get grossed out take a look at https://picasaweb.google.com/elsawind/Forehead?feat=directlink
We communicated with Dr. Langford but she said that the doctors were doing what they were suppose to do, the problem is that his body does not respond to chemicals.
There is no much hope here, I will continue with the beet juices, the Just Cranberry juice, the milk thistle, multivit. etc, to try to safeguard as much as I can his organs.

Sangye
03-22-2011, 05:08 AM
My gosh, what a terrible lesion he had! Is that skull bone exposed?? I had a very difficult time healing a huge vasculitic lesion on my leg a couple years ago. It reminds me of that. It took almost a year to close.

I sure hope the new treatment works for him.

elsawind
03-22-2011, 05:44 AM
yes, it is bone that is exposed, we have to go on Thrusday to the plastic surgeon, I'm worry about that black spot on the bone, maybe necrosis. All his wounds take forever to heal. So far the organ involved the most is the skin. In 2007 a testicle was removed and the biopsy said,
The findings in this case are most consistent with
either Wegner’s granulomatosis or collagen vascular disease.
I sure hope Infliximab works for him, otherwise if there is time we will try again RTX
Good luck with your vasculitis!!! take care

elephant
03-22-2011, 09:26 AM
That was a small lesion that turned out to be quite extensive. Wow, that looked like it hurt. When I was 15 I developed a lesion/blister on my forhead and it left a big scar. Is that how his started?

elsawind
03-22-2011, 10:04 AM
Yes started with a little actinic keratose that the dermatologist froze. By mid July it was bigger, the rheumatologist thought it was vasculitis, because he had many lessions specially on flair ups. We went to Greenland and Island for a couple of months and when we returned and went to the dermatologist it was really big, a biopsy was done and the results were sebaceous adenocarcinoma that it is an agressive and rare type of cancer. The doctor use a procedure called Mohs, you are sedated but it is a nighmare, four layers were removed and part of the bone was scraped. Very aggressive!! After so many months he still have some bone exposure. We will see what the ENT says on Thrusday. The plastic surgeon did not wanted to do a graft if it was not absolutely necessary, did not want it to have a double problem. Eventually it will close but it is taking forever!!!

elephant
03-22-2011, 12:41 PM
Healing will take longer with all the medicines that he is on. Yes it will heal in time. Keep us updated. Good luck Thrusday!