I had 4 IV treatments of Rituxin and am now 2 weeks in on Imuran I saw a video on You Tube of someone that did that and then used it for their maintenance drug rather than any of the others. Has anyone else done this?
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I had 4 IV treatments of Rituxin and am now 2 weeks in on Imuran I saw a video on You Tube of someone that did that and then used it for their maintenance drug rather than any of the others. Has anyone else done this?
I had the 4 infusions of RTX in June and my B-Cell count is at zero. My doctors are monitoring my B-Cell count and as soon as they return, I'll get another infusion of RTX (continuing on indefinitely). My nephrologist said that he has seen the time between RTX infusions be anywhere from 3 months to 24 months, but on average it's about 6 months. So right now we're waiting to see how many months I'll need between RTX infusions.
As a caveat: I haven't entered remission yet and I'm still on 17.5mg MTX weekly, 10mg prednisone daily, but I know the long-term plan for me (over the course of the next two years) is to taper off of the MTX and (fingers crossed) pred and only do RTX infusions whenever my B Cells return.
So no direct experience yet, but the goal is for RTX to be my primary maintenance drug!
Quote:
Originally Posted by morningsunshine
I have been on Imuran, Humira, and Methotrexate. In March I had my first go at Rituxan infusions and responded very well to them. I will be using Rituxan as a maintanence drug every 6 months and am currently now into my second dose of it. I am also taking 20mg of Methotrexate weekly and 5mg prednisone daily. I am just thrilled I no longer have to take the 60 mg of prednisone daily.
I had my choice between Imuran and Methotrexate. I chose Imuran and ended up with 200mg. I am down to 2.5 of Prednisone daily to go with it and of course the Bactrim, vit D, Pepcid etc. I guess I was looking to see if anyone has gone without anything except RTX. I hate taking drugs in general so would like to get off the Imuran and maybe only do the RTX every so often. Right now I have been told the Imuran is for at least a year. Some days I guess I don't take this thing serious enough. I know have been sick, but the drugs are really what made me feel like I was. Double pneumonia was no fun but I didn't feel as bad as I did on the 60mg prednisone. That almost killed me. I think I had every side effect listed. Much better now that I am down to 2.5. Thanks for your input.
I have lung involvement-- specifically, alveolar hemorrhage-- which has been refractory to a number of treatments through the years. I've been on rtx for 5 years, which is the first drug to have gotten the Wegs under control.
For the first 3 years we did 4 infusions in a month, 6-12 months apart. It was brutal for me, as I have an uncommon bad reaction to rtx (each infusion causes extreme weakness lasting about a week, and the adverse effects of each weekly infusion were cumulative. A month of treatment took me 6-9 weeks to recover). The once-a-year treatment only kept the Wegs in check for about 7 months. Between the long recovery time and the 5 months of poor disease control, I had only a few weeks a year that were halfway decent.
Last year we started following a new maintenance protocol whereby I get one infusion at half-dose every 4 months. (The protocol is actually every 6 months but that was too long for me between treatments.) The Wegs specialists are all using this protocol for people who have severe involvement and require something more powerful to stay in remission than mtx or imuran.
So far so good. The single infusion only knocks me down for a few days.
That is great to finally find some thing to help shorten your down time. Hope things are going better for you these days.Quote:
Originally Posted by Sangye
Well after six good years...I relapse :predrage:! I was on 2000MG of Cellcept and between 1MG-5MG of Prednisone for almost 3 years, the last 2 years 1mg of pred. Last month I spent 2 weeks in Europe and wallah the occasional joint pains I started having 4 months ago and in greater frequency was the sign when on August 8th, I had occult blood in the urine +1 and today had blood in my sputum.
Well now today September 22nd I have to submit an approval from my insurance carrier for RTX infusion starting in October. While I wait, my doc increased my pred to 20MG and my cellcept to 3000MG but he is concerned since my CRP, ANCA and SED rate all went up.
I guess if my face will swell...at least Halloween is around the corner so don't be surprised if you see my face painted orange!
Aww Richard, I'm so sorry. You've had a really good run of it for 6 years and I'm glad for that. I hope the rtx sings the Wegs dog a lullaby that gets him back to sleep easily.
It is great to have had that long remission but it also confirms the need for on going monitoring since who knows when the wicked Granny will awake again and harass one further. Best wishes for a quick return to state of remission.
Curious as to why the need for a wait for the RTX. I would probably want to start tomorrow or some time this week, why not?
6 years is a nice long time remission--hearing your experience definitely gives me hope!
I'm so sorry that you're experiencing a relapse. Fingers crossed that RTX quickly sends you back into remission (and on to lower doses of pred!).
Happy Halloween Richard...I guess. Sorry you've relapsed, but you know the procedure. Best to you on this round!
I will keep you informed I believe my infusion will start October 6....Quote:
Originally Posted by Sangye
We'll today my numbers started going down in fact no more blood...insurance is wanting more lab with increased cell crept to see if I go back in remission. Weird huh! Right I am scheduled to start Oct 6.Quote:
Originally Posted by drz
Richard that's a good thing, another set of labs will be essential. Best wishes to you and what ever tx that it will take, to make the dog sleep again.
No RTX treatment yet...my best guess is what I suspected if my meds were increased from 2000 to 3000mg Cellcept and a higher Pred and my numbers stabilized (chemical remission) then they want more reasons from Doc as to why a course of RTX is needed!
Will keep you informed.
BTW...whew is RTX EXPENSIVE, my understanding it is almost $12K per infusion. SMOKES!!!!!:ohmy:
It's a good thing if you can get the Wegs dog back to sleep with just a bump in Cellcept and pred.
Gosh yes Sangye :thumbsup:
When I got my rtx at Ohio State, they told me the list price was almost $20K. Thankfully, insurance paid all but $20.00. You're right. It isn't cheap, but it sure worked for me.Quote:
Originally Posted by RCOSSIO
Pete that was 4 infusions...$80K total?
Quote:
Originally Posted by Pete
My insurance paid for mine too ($18,600.00 each)Quote:
Originally Posted by RCOSSIO
So far, I've had six since November of last year and will have two more in November of this year. Someone else can do the math, because I think I'd cry if I had to do it!! (-8
Seriously, I have a great job with great benefits and fantastic insurance. That is why I drag my sorry, sick, aching behind out of bed every morning and get to my office by 7:15 a.m.--I need the insurance and benefits.
My doc made a great case as to why I should get RTX and I am good to go.
I hope you have as good of luck with it as I have Richard! I'll keep my fingers crossed for you!!Quote:
Originally Posted by RCOSSIO
Best wishes to you with your RTX tx's.
It is great that you are tolerating your treatments better!!!!Quote:
Originally Posted by drz
Quick update will receive my last treatment Monday I have had no reaction other than a scratchy throat. Let u know soon. BTW...Insurance still wanted to know if Cellcept put the dog in slumber why then RTX....figure!
I get RTX now as treatment for a flare - just into my third flare in 5.3 years since diagnosis. Consultant rang me today after seeing my blood test result as the joint pain had really started to come back hard. CRP and ESR both gone through the roof - had me restart pred (20mg) immediately and is organising another RTX infusion. I am amazed at how quickly the pred reduces the joint pain - almost like magic!
Oh crap!! Hope things get under control pronto!!Quote:
Originally Posted by pwc51
Boy...3 flares in 5 years. Whoa!