Rituxan Question

[snooz23]

I see Dr. Langford at Cleveland Clinic and I will be checking into the hospital for my second rtx infusion tomorrow. It is my understanding that this is the common practice there because of hassles w/ ins. companies. They have an infusion clinic in their offices however I cannot go there because of ins. Therefore I am required to become an "in patient" for 4-6 hours and then leave again. I went through it 2 weeks ago and it went rather smooth but I did not like "taking a bed" from someone who needed it or the fact that I was exposed to extra germs.

FYI--Since dx in sept 09 I have tried mtx. for 6+ months and ctx. (3 months)/imuran with no luck. All have been given under the incredible care of Dr. Langford and her team at CC. It's round three for me at high doses of of pred. and I am hoping the rtx. is the third charm.

[elephant]

Hi snooz, I like her too. So glad you are getting good care, and hope this works for you. Keep us posted.

[Sangye]

Hey snooz, it's nice to hear from you! Terrific to hear that you're going to CC. How weird about the hospital thing. At JHU they don't seem to have trouble treating patients in the infusion clinic.

[snooz23]

Completed round two of RTX. now we wait and see how the lung scan turns out in @ month. Will continue w/ pred. taper and bacterim 3x a week. No maintenance drug which I am happy about. Imuran and me did not mix.

Checked in the hospital, took a bed, watched a movie, slept a bit and then was released to make the very icy, snowy drive home. No ill side-effects whatsoever from the infusion. Now I am "requiring" that my B cells reproduce without the Wegs. glitch in them. We'll see what happens. Cheers~

[elephant]

Snooz, glad you had no ill effects from the RTX! I am sure the lung scan will bring you good results!

[gurinbasra]

I'm about to get my second shot at the Rituxan - first one was March 2009 and like you I didn't repond to the chemo at all which I had for year. The Rituxan immediately gave me relief as I was able to finally lower the Pred to 10mg and I felt so much better after than I did after the chemo. I've been well ever since but blood work and a recent sinus biopsy shows it's still hanging around specifically just in the left sinus so that's when my dr decided on this second round. Even in Canada with the insurance companies, some cover, some don't - mine did at 80% my husband's didn't, so this year I signed up for 100%.

I took the Rituxan in combination with the Methotrexate which I am still on to date. At the time of infusion, I think they gave me some Benedryl or something as running a fever is common. The only risk of Rituxan is having a reaction at the time of infusion which is why it can only be administered where they will be able to "save your life" if you were to have a reaction at time of infusion. Originally the drug was thrown out of the hospitals in Calgary, but the medical staff deemed there was no clinic equipped to deal with a person having a life threatening issue - even a 911 call would not be quick enough for response - that the drug is now back in the hospitals.

I wrote the Alberta Health Minister requesting that since some Canadian provinces have the drug approved, that every Canadian should be given the right to have it for free. He wrote back - yes, I did actually get a response - that I need to get the pharmaceutical company to apply for it's approval - washed their hands of it pretty much. So, then I wrote to LeRoche and they said that at this time in Alberta they were not considering applying, I asked why, no response - washed their hands of it - but I won't let them off the hook so easily. So now, after my next infusion, I'm going to request it again - point being, stick up for yourself. Unfortunately, even being this sick we still have to some how find the time and energy to deal with all the unfair justices that become part of our health world and at the end of the day all WG patients will benefit.

Good luck, I certainly hope you get the drug and see some good results. At the end of the day, it's all about getting better and claiming some of your life back.

Keep us informed.

Gurinder

[pberggren1]

Gurinder:

I am a little concerned about the sinus biopsy you mentioned. It did not seem neccessary to do the biopsy. You already knew that you have Wegs. And the trouble with nose and sinus surgery on Weggies is that it can easily trigger a flare. But then again any surgery I'm sure would be the same.

[gurinbasra]

Hi,

I think the second biopsy was a great decision and this was not confirm if I had Wegener's (the first one confirmed it), it was to pin point whether it was still active. I've had the numbness around my left eye for a year now and the biopsy showed some healed vasculitus and confirmed active wegener's where I'm feeling the numbness. In my case, I've had such specific flare ups that have been hard to control and an MRI just seems to light up everything.

I've had no flare up, feeling just fine, in fact even with a positive ANCA - not much at 5.2 but positive anyway, I had no idea that the Wegener's was active. I doubt I'll need any more biopsies, but thanks for your concern!

[Jack]

I have also had repeat biopsies of both sinus and kidney some time after confirmation of Wegener's. I'm not sure that I fully understand why (because I was not as proactive over 20 years ago!), but it seems that they can obtain useful information that is only available by this method. I know that they would not have done them if there was not a net gain to be made considering the risk (and indeed, the second sinus one went a bit wrong and put me in hospital for a few days, but it did not cause Wegener's problems).

[JanW]

I wonder what difference it makes in treatment knowing that granulomas are in one place vs. the other since it is a systemic disease.