I think I am having a flare

[Mel]

Hi everyone,
I wrote a few weeks ago saying that my sinuses were acting up. Unfortunately, I continued to get worse, my nose started bleeding and I became alarmed. I was coughing alot. Then, my joints started hurting, and I just knew. I went to my rheumatologist. He ran some tests and he saw that my CRP was very high. We started on Prednisone, 15 mg. A few days later, I retested because my symptoms weren't too much better and I was even more worried. The CRP had come down so much, but I did a lung and sinus xray and the lung one showed a white area. My doctor sent me right away to the respirologist who took a look at it and said he was pretty sure that I was flaring. I am now awaiting my ANCA results. If they are positive and the bronchoscopy shows no infection, they will start treating me again. This time my doctor wants me on Rituxin. He says that it has been a great drug. From what I read about it, it seems really wonderful. I originally had cytoxan through IV about a year and a half ago and we had achieved remission until now. Did anyone have the same situation as me, where they used rituxin the second time? I am not as sick now as I was the first time around, but I am afraid of getting there. My doc said we will start the rituxin next month. Let me know your thoughts. Thanks!

[elephant]

Mel, I am glad you caught it quickly and all I can say is listen to what Sangye and the others who been on RTX. Hope you start to feel better soon.

[Sangye]

Rtx has been a great drug for me. I was on ctx twice. It never got me into remission. I can't take ctx again because it's overly toxic to me and nearly caused bone marrow failure. Rtx is tough on me-- feel like a truck ran over me for 6 weeks, but after that I was in remission.

You need to start right now to get rtx approved by your insurance. It can take a few weeks.

[Minneapolismark]

First off I am sorry to hear about your apparent setback.

My rheumy wants to put my on RTX in a couple of months, and I'm considering it. If you go for it please let us all know what happened, the challenges with insurance, etc. It would be a great help to me and probably others.

[chrisTIn@]

I'm interested too.
I don't RTX now, but might need it in the future.

From what I read on the internet, this drug seems to work well, but is very expensive.
That can cause problems with health-insurance companies, is n't it?

[JanW]

Some companies require that you 'fail' on ctx, before starting rtx. Some don't. That's not a bad thing for any of us weggies to check out when we are first diagnosed (because you don't really know if you are going to need the big guns).

HOWEVER, at the Symposium, all of the docs there said that they had very minimal problems with approvals for their patients, which suggests to me that very expert docs/very savvy patients don't have a huge issue in getting this drug approved. I really think it varies greatly based on how much the doc is willing to advocate, whether he knows exactly what the write to get you approved etc. A one-doc shop probably doesn't have someone who he dedicated to dealing with tough insurance cases. At my rheumy's office (which is in the teaching hosp which has the largest rheumy department in NYC), they've got a couple of people who do that for a living. I definitely got a sense that the docs at the symposium felt as though it was really the doctor's job to sort this all out for the patient, but I know that several forum members have had to sort this out for themselves as well.

[Sangye]

Each rtx infusion costs about $10,000 in the US. The fewest you will need for a round of treatment are 2 infusions, the most are 4. So yes, that's a hefty cost to insurance. I've posted suggestions for getting insurance to cover it, so you can search for it in the forum. JanW is absolutely right about the Wegs docs knowing how to get it. Dr Seo submitted everything they needed and I was approved quickly.

As far as efficacy, two large trials showed it to be as effective as ctx (and slightly better). It's been used for Non-Hodgkin's lymphoma for about 10 years, but has only been tried on Weggies for about 5. They don't know the long-term effects as well as they do for ctx, which has been used for Wegs for decades. Knowing how much rtx has helped me (and how much ctx harmed me), Dr Seo has cautioned me about being a "cheerleader" for rtx. He says it's a great drug, but for younger people it must be used conservatively until the long-term effects are better known. (I'm 47, and he considers me young.) He literally wagged his finger at me when he cautioned me. LOL

[Mel]

Thanks so much for the input. Is it possible to work while taking this rituxin? My doctor said that it is possible. I also was wondering how long remission was achieved after taking it for most people. I hope to have a longer remission this time!