Rituximab Approved

[Chadwyck]

I finally got a rheumatologist! Yay...I feel better already just thinking about it. I begged and begged for 2 years to be on Rituximab rather than cyclophosphamide in the event I develop kidney problems like I did in 2009-2010. She said if things get out of control again she would definitely put me on Rituximab as a last resort. What I didn't know was that Rituximab is also given by I.V. just like cyclophosphamide... "duh me!"...I should have researched it sooner before begging for it like a little kid asking for ice cream. Either way, my question to anyone who's been on it is:

Do you get sick from it?
What is/are the side effects compared to the regular cytoxan?
Do I need to be off work longterm AGAIN just to have it done or only for that particular day?
How much of the Wegener's does it really fix?....sinus, lungs, kidneys, joints, etc?

All this time I thought Rituximab was a pill like Azathioprine but if the end result is, every 6 months go for another I.V. of it rather than daily Azathioprine, I'm up for it. I would like to know what it's like to not have to take pills every single day.

[Alysia]

Hi. I wrote some threads about my first rtx. you can read it. good luck !

[mishb]

Hi Chadwyck, it's great to see you.

About time you got a rheumatologist.........and also one that will agree to RTX.

I can't speak personally about it but from what I understand, you shouldn't have to take anytime off work - apart from the day you are having the infusion.
I guess it can affect everyone differently, so maybe if they did it on a Friday, you would know over the weekend as to how you feel about going back to work the next Monday.

I hope everything else is going well for you.

[rebekah]

Yay for getting a rheumy and Rituxan approved! I was on Cytoxan (pill) for 6 months when diagnosed last year and Rituxan (1 a week for 4 weeks) in March with my flare. I like Rituxan better since there were fewer side effects. Other than being nauseous during the infusion and tired the rest of the day and usually the next I was fine. I don't remember any other side effects that would make you miss work other than the day you decide to have it (but remember everyone is different and you may have other side effects). The first infusion was 5-6 hours, but the time does decrease with the next ones since they go slower with the first one to make sure there are no reactions. I had the infusions done on Fridays so I had the weekend to rest and recover and would be okay to go to classes that week. Best of luck to you! :)

[Chadwyck]

Thanks everyone for your input. I checked my benefits with work. Rituximab is covered with special authorization by my rheumatologist. She made it clear that no matter what the cost is she would keep that option open. Those who don't know our coverage in Ontario, Canada... it is O.H.I.P. (Ontario Health Insurance Plan) covered by our provincial government. I still need to have the rheumatologist fill out the form to justify why we would be going this route rather than another round of cyclophosphamide. I like the fact that most people are saying "less side effects & no more time off work"!!! I was told that I had to take 6 months off work all because of the I.V. cyclophosphamide. Right now, my ankles are burning but no swelling at all. I'm using my smartphone to take pictures of anything abnormal. This way I can track things better when it's time to report back to her. I hope this is just a minor flare....then again, it could be something else totally outside of the vasculitis world.

[Geoff]

Hi Chadwyk, good news for you I hope with Rituximub coming up! I had 3 courses of Cyclo and felt nauseous and 'flattened' every time. Last friday I had my 5th Infussion of RTX and surprisingly I had the strongest reaction!! How bizarre everything is to do with this disease.
Had an upset tummy, vertigo (positional) and totally wiped out for 2 days. Still back in fighting trim today and looking forward as I continue my pred taper,: Yeh bring it on!!
P.S darn those ankles, there always seem to be someting going on there.

[tpls63]

I was diagnosed with WG a little over 2 yrs ago and was started on Rituxan right away as it was just approved by the FDA for WG about 2 months earlier.
The initial infusion took almost 6 hours and the second one 4 hours. I got the infusions 2 weeks apart and then about every six months repeat the same 2 infusions 2 weeks apart. Never any side effects at all, no weakness or tired. Just back to normal. I'm a 63 yr old male in Duluth Minnesota. I went to the Mayo clinic and the docs I saw there said I was luck to get such a good rheumatologist who got me on the best meds right away. I'm also on 2.5mg prednisone which is down from the 50 mg I started on 2 yrs ago. I just had a 6 mo check up a couple weeks ago and the lab work all looked excellent so the doc said he doesn't want to see me until the end of Sept unless I feel the need to call him. So if you can get on Rituxan go for it!


I finally got a rheumatologist! Yay...I feel better already just thinking about it. I begged and begged for 2 years to be on Rituximab rather than cyclophosphamide in the event I develop kidney problems like I did in 2009-2010. She said if things get out of control again she would definitely put me on Rituximab as a last resort. What I didn't know was that Rituximab is also given by I.V. just like cyclophosphamide... "duh me!"...I should have researched it sooner before begging for it like a little kid asking for ice cream. Either way, my question to anyone who's been on it is:

Do you get sick from it?
What is/are the side effects compared to the regular cytoxan?
Do I need to be off work longterm AGAIN just to have it done or only for that particular day?
How much of the Wegener's does it really fix?....sinus, lungs, kidneys, joints, etc?

All this time I thought Rituximab was a pill like Azathioprine but if the end result is, every 6 months go for another I.V. of it rather than daily Azathioprine, I'm up for it. I would like to know what it's like to not have to take pills every single day.

[mishb]

Hi tpls63 and welcome to the forum.

I'm glad rituximab work well for you and that you are feeling great......with excellent lab results.

We look forward to hearing more about your experience with WG