Rotuximab

[Christina32]

For those receiving Rtx I am wondering how often you're getting infusions. I had my initial 4 doses in April/may. It is recommended to have another one at 6 months. I am doing very well with treatment and tapering off of prednisone. I am also on Azathioprine. Anyway, my rheumatologist Is undecided whether we wait or if I just get it routinely. I'm thinking if all is well do I really need it yet? I heard before that everybody 'needs' it for different time lengths....

[pberggren1]

Right now my doc wants to do a 1g infusion every 6 months for the next 2 years then reevaluate.

[Christina32]

Hey Phil! Hope all is well - how many have you had? Would your opinion be to get it routinely or to stretch it out some? Things are just going well so of course I question if I need another one yet but I guess the other side is do I pass and wait until 'it' acts up?!!

[mishb]

I haven't had it but I just wanted to let fellow Aussies know that rituximab (mabthera) has just been approved in Australia for use for patients with WG.

It has been used for many years on severe cases but permission from the Health Minister ?? had to be sought first - this is no longer the case.

[rebekah]

I had Rituxan in March and my first maintenance infusion Friday, and will have another in 2 weeks since my doctor said that 2 infusions two weeks apart would be best for me. I think the standard is every 6 months... I would think it's best to have the maintenance round every 6 months, before you have a flare up. So glad to hear things are going well for you so far!

That's awesome news for all Aussies - happy to hear it's now approved for treating WG there!

[drz]

There are studies underway now to try find out if there is a way to determine how often or when RTX should be given when used for maintenance therapy for Wegs. Some doctors prefer to wait till symptoms are significant, others look at lab results and wait for bad cells to return, and some try to be proactive and go with a specific time interval and maybe there are other methods too. I think it might eventually be fond to be very variable as to what is best for which people. My Weg expert told me though like most cancer drugs, the more it is given, the less effective it tends to become in relieving symptoms and achieving its desired goal. Thus there is a bias to give it as little as possible but some times it only thing that can be done until they find a new treatment modality for Wegs.

[Alysia]

I got my first rtx 1000mgx2 (two weeks between each IV) and then every 6 months 500mgx2. it is better not to wait for a flare.

[pberggren1]

Christina, the use of RTX is getting more and more common for us Weggies. But for me to suggest that everyone should get an infusion every 6 months would be mad.....:razz:

Each case is so indivual. I would have to see your whole case file to determine if RTX would be a good way for you to go.

[mdjazz01]

Had my 4th RTX treatment last Tues.& had a bad reaction during the treatment so it was stopped half way through. A week later and I feel sicker than ever. When will it take hold ? any ideas... Strange to have a reaction on the last treatment !

[Alysia]

Had my 4th RTX treatment last Tues.& had a bad reaction during the treatment so it was stopped half way through. A week later and I feel sicker than ever. When will it take hold ? any ideas... Strange to have a reaction on the last treatment !

what was your reaction ?
sounds scary...

[mdjazz01]

Don't want to freak anyone out but ...I was violently shaking, blood pressure shot up, O2 level went down, fever and just sick all over for at least a hour. They were giving me all kinds of meds to stop the shaking. It was pretty scary for over an hour. After almost 2 weeks later and I still have crushing fatigue, very bad back pain, head and face pain. The only symptom improved is my cough and that is a HUGE improvement. Still I cant work or walk much, I have to sit down to wash my face each day because I am too fatigued. Is this normal? I mean for WG.

[Dirty Don]

Unfortunately md, I remember each step you described. Normal? Mmmm, never go that far with WG, but it/they are symptoms of a pretty strong flare for me. I am on Lexapro for the shaking (tend to panic attacks at some point for me), nothing but cough drops for the cough, still experience the hills and valleys of fatigue...what else? Hmmm. Anyway, your details do sound common, no freaking allowed...LOLOLOLOL!!!!! We're all freaks...WG forever...oh no, now I'm losing my mind again...hate those drugs!