Medication Switch

[JimmyJames]

Good Afternoon,

Tomorrow I have a follow up appointment with my new doctor at the Mayo Clinic to go over my blood test results from last week and likely discuss switching my medications around. Prior to my flare up in September I was on 200mg of azathioprine daily, and due to the flare 60mg of prednisone was added along with the azathioprine. I was originally treated with cytoxin and then methotrexate, both of which I tolerated pretty well.

My first question would be what medication have people switched to during/after a flare up?

And my second question is what have been peoples experience with Rituxan? I know it is pretty expensive, and I know this questions is not easy to answer because it depends on your coverage but dose insurance typically cover it?

Thanks in advance for any response.

[Green Grass & High Tides]

Hi Jimmy- sounds like you tolerate meds pretty well so the Rituxan may go smoothly too. I bet it will.

When I did it there were a number of people who said it didn't much bother them and helped.

It didn't work for me but im not a good study since I was severely ill at the time.

Good luck at the docs. I can say that charting daily symptoms has been one of the best suggestions i was given. Especially when trying to see if a certain medication helped or not.

A good alliance with my doc has also helped so I wish that for you tomorrow.

Best wishes
Tom

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[Pete]

Hi Jimmy,

You may be a good candidate for rituxin. I've had two rounds during the past two years. I generally feel a little tired for a day or two after each infusion, but it didn't stop me from normal activities. Your insurance carrier will most likely require its approval before covering treatment. You may have a co-pay. I got my treatments at Ohio State. They billed my insurance about $20,000 per infusion. After write-downs and insurance payments, my co-pay was $20 per infusion.

Good luck!

[MaxD]

Jimmy,

I've had good experience with Rituxan - no noticeable side effects, brought all my numbers down, after 8 months had one maintenance infusion - probably will have one more in a few months from now. Insurance covered it, and Genentech covered all the copay - they will issue you a card good for $10000 or so and good for one year. The hospital should have information about that.

Good luck!

[JimmyJames]

As I anticipated I am going to start on Rituxin. My first infusion is next Tuesday and a second two weeks after that. I am also starting my slow taper off of prednisone. It'll be nice when I am off of daily azothioprine and prednisone.

I called my insurance and it covers Rituxin, which is good because I could not afford it without it.

According to the instructions I got the first infusion can take 4-6 hours... Is how long it took for people? And should I plan on closer to 4 or 6 hours?

[Christina32]

Hey Jimmy, I think 4-6 is pretty on point. Your first one may be closer to 6 while the second one closer to 4. I'm wondering, what does your doc say about taking rituxan and azathioprine?

[Pete]

My experience with rtx is similar to Christina's. First one took a little over five, subsequent Rd were just over four. Just a little tired the day after.

[JimmyJames]

Hey Jimmy, I think 4-6 is pretty on point. Your first one may be closer to 6 while the second one closer to 4. I'm wondering, what does your doc say about taking rituxan and azathioprine?

She dropped me from 200mg to 100mg of azathioprine as on yesterday, I'll take 100 for a week then stop it all together.

[Jaha]

Wishing you all the best with your infusions. Please keep us informed on how you are feeling after the infusion.

[JimmyJames]

I almost feel bad about posting this but so far I haven't experienced any side effect from my first Rituxan infusion. The infusion went as well as it could have, just over 5 hours. Hopefully my next one in two weeks will go just as smoothly.

I say I feel bad because I have read all of the stories of people experiences negative side effects with medication and as of now (knock on wood) have yet to really have any side effects from any of the Wegener's medication that I have been on (well besides weight gain from prednisone).

[annekat]

You shouldn't feel bad about posting that, JJ, as it will offer encouragement to those with any trepidation about taking RTX. It's great that you are adapting to it so readily, and it seems likely it will really help you.

[Birdie]

(well besides weight gain from prednisone).

It's not easy but I never gained weight even at 80 mg for a year and a half. Without fail, every single morning at the same time, I get on the scale naked (trust me, not pretty) and keep the reading in mind all day. I'd easily be 300 lbs otherwise. Instead I'm 5 lbs over my weight in high school (1976). I gained weight fast any time I stopped doing the scale thing. It works I tell ya, it really does. Just knowing your exact weight today vs the recent trend.