Rituximab

[moyan]

Hi, I learned at home ec teacher school that the only vitamin you can od on is vit.D. 2 fisherman who virtually lived on fishliver did overdo.

[Sangye]

(Moyan, you can take toxic doses of any fat-soluble vitamin. The most common are D and A.)

Luce, I'm sorry you're having to take ritux but glad you can take it instead of ctx. It's routine to give at least 100mg solumedrol (IV form of pred, equiv to 150mg oral pred) to prevent allergic reaction. The risk is highest for the first couple infusions and after receiving numerous rounds of rtx.

Because I do so poorly with pred, my Wegs doc said we could lower the pred dose in subsequent infusions. As much as that idea appeals to me, the risk of having an allergic reaction to rtx makes me unlikely to change what's working. An allergic reaction is pretty nasty and scary, and if it's bad enough I could never have rtx again. Big problem for me.

I was incredibly weak after each infusion. Extremely pale, could barely walk or function. Each week I got weaker. I barely made it through 4 infusions. Before this scares the pants off you, remember that I had also been on ctx for a couple months and was on it for the first 2 weeks of rtx. Ctx is overly toxic to me and was destroying my bone marrow faster than I could make it. So it's hard to say how rtx alone affects me! I was also in very bad shape from the Wegs flare-- lungs hemorrhaging, extremely weak-- when we started. I didn't see a break in things until about 6 wks after the first infusion.

[elephant]

Good luck to you Luce! This Ritux will work! Let us know how it goes. Remember to rest, so you will be strong for your Wedding!

[Luce]

Sangye, thanks for sharing your experience and I'm sorry you went through all that. However you're right, I don't think I can take your experience and expect the same due to your circumstances.

Bummer about the IV pred, I was hoping I might be able to skip that as the flare isn't causing me too many problems and I'm only 10mg oral which I've been told to keep taking. But if it is to avoid an allergic reaction then bring it on I guess.

Thank you for the positive words elephant, I'm secretly quite pleased I've managed to get Rituximab which I know has been very successful with others. Shame I'm flaring and have worked my way through every other drug used to treat WG (except methotrexate which had never been mentioned to me), but that is the only way to justify having Rituximab on the NHS.
I have to sign a consent form as it isn't licensed for WG here and I have to travel 35 miles to the county hospital to have the infusions because my local hospital won't fund it. I have my first infusion on 12th Feb, then another 2 weeks later and we'll review after that.
Also still waiting for my iron infusion which is another trip to County hospital for some reason, and a check up with respiratory at the local hospital tomorrow to make sure my lungs aren't affected by the flare.

Bad timing for the wedding which is in April but hopefully I'll be done with it all by then, and thanks again Sangye for the advice. One thing I won't be doing is driving myself to the Rituximab appts after hearing how bad you felt afterwards.

[Sangye]

Luce, I also think you'll have a different experience by only having 2 infusions in one month. I had one a week for 4 weeks. And don't worry too much about the pred. Especially if it's two doses two weeks apart. You probably won't notice much. Definitely don't drive yourself, though.

[GARYfromBOSTON]

I'm starting Rituximab next Friday due to a recent flare, any idea how I'll feel afterwards?

No mention of any IV pred with it, is this normal?

Sorry for the short post, I am rushed off my feet at the moment trying to balance work, wedding preparations and hospital appointments. Hope you're all well or at least in good humour!

Luce, I just had my second dose of rituximab and they just gave me a tylenol and a benadryl (i was on 50 mg of prednisone a day). Since the first dose went in with no adverse reactions, they were not worried at all about the second (they start the first does real slow). I really felt no different after the injection. Good luck!

[Luce]

Thanks Gary, its reassuring to hear this could be a breeze. I've only ever had one allergic reaction and that was during plasmapharesis for the wegs, something to do with an agent in the plasma. I came out in a lovely lumpy rash but it went again within a couple of hours. So I'm hoping there won't be any reaction to the Rituximab.
I tolerated cyclo infusions very well, just felt tired for a couple of days afterwards so fingers crossed for the same or better.

I'll let you know how I got on, although I'm a little sad to be saying goodbye to Cellcept in a way as it's been very kind to me.

[Sangye]

I felt the same way about stopping Cellcept. It wasn't keeping the Wegs under control, but it did keep me off pred for 2.5 yrs and I tolerated it well.

[Luce]

I got down to 5mg pred in the 6 months or so I was taking Cellcept so it was looking likely that I'd get off it completely, and then the flare came along...
I'm on 10mg at the moment which I know isn't much at all, is Rituximab a steroid sparing drug like Cellcept?
I barely noticed the Cellcept, the pills went down easily and apart from the odd upset stomach I don't think I experienced any side effects from it. I'd have been happy to take it forever if it kept the Wegs away.

[Jack]

Cellcept did not work for me either and I was always having flares until I switched to Mycophenolate, but I still need 10 mg of pred and won't be able to get any lower.