Rituximab side effect's?

[guylaporte]

Hi everyone,

I'm was dx in may 2009. I'm on cellcept for maintenance since april 2010. Everything as OK until mars when a flare came up with the usual joint pain...
Docs put me back on Cellcept full dose and back on prednosone early april. The flare is still there and they want to put me on Rituximab to bring back the remission.

I'm scared about the side effects and the risks of infections....

Tell me about your experiences...

Thanks

Guy

[Dirty Don]

I'm not on rtx yet, but have been told by my docs (Mayo) if I flare again, they will start rtx as the next step. Others on rtx will chime in soon. Best of luck.

[drz]

I'm not on rtx yet, but have been told by my docs (Mayo) if I flare again, they will start rtx as the next step. Others on rtx will chime in soon. Best of luck.

I am on the same plan for a serious flare according to my Mayo consultant but so far generic Imuran has been able to handle my minor flares which he doesn't consider a REAL FLARE since it hasn't required RTX. Many take RTX on regular basis to try prevent flares and others take it when ever their symptoms return or lab work gets bad and indicates a need for it. There is no consensus on a right way to treat us and most likely it will some day end up in a "it depends on the person and their history" answer.

[Alysia]

Hi, and welcome.
I did my first RTX 2 months ago. I wrote about it here. when I was with the IV, the only thing was that my blood presure became very low (35/70 !). the nurse checked it every 30 min. I ate chocolate and drank a lot and it helps. after that I was very tired. I know others were sleeping during it. I couldnt relax and sleep. Im feeling gradual improvement in most of the symptoms. (not all of them)
good luck !

[TommyG]

I experienced no side effects from Rtx that i was aware of. More importantly, it knocked out my active disease. However, we do all react differently. Looking back cytoxan and prednisone , for me anyway, were much more severe drugs.

Best wishes

[mishb]

Hi Guy and Welcome to the forum.

I don't know anything about RTX except what I have read on here.......it does not have a widespread of use in Australia.

I hope it helps get you back in to remission

[Empty bucket]

I have had 5 courses of Rtx over the last 3 years. I have had a sinus/upper respiratory infection since my last infusion which was the first week of February. My rumy ordered a immunoglobulin blood test. Results came back low.
This is the email I got from my Doctor's PA:

"You have an aqurried immune deficiency secondary to Rituxan, IgG level is 255 the normal range is 650-1600 this is the reason why you are unable to clear the sinus infection and are getting recurring sinusitis infections. We need to administer
Privigen which is human immunoglobulins to help bring those IgG levels back up to normal which will help you fight infections." There is more to the emal but that's jest of it.

I was was dx in 2008 and been coasting along pretty good untill the last 3-4 months.
Looking for comments or advice on this.

dj
empty bucket

[Alysia]

I have had 5 courses of Rtx over the last 3 years. I have had a sinus/upper respiratory infection since my last infusion which was the first week of February. My rumy ordered a immunoglobulin blood test. Results came back low.
This is the email I got from my Doctor's PA:

"You have an aqurried immune deficiency secondary to Rituxan, IgG level is 255 the normal range is 650-1600 this is the reason why you are unable to clear the sinus infection and are getting recurring sinusitis infections. We need to administer
Privigen which is human immunoglobulins to help bring those IgG levels back up to normal which will help you fight infections." There is more to the emal but that's jest of it.

I was was dx in 2008 and been coasting along pretty good untill the last 3-4 months.
Looking for comments or advice on this.

dj
empty bucket

Hi.
Im sorry to hear about that. can you write more ?
your sinus inflamations - are they because of WG or from other reason ?
since RTX is relatively new, how long anyone here have been using it ?

[Empty bucket]

Yes my sinus problems are all related to WG. Always will be. I was wondering if anyone who has had RTX has had any problems with low immunoglobulin levels or even if there Doctors ever order blood test for it. I was dx in 08 after all the usual mis dx stuff. I don't think I ever got a IgG blood test until now. If I understand what my Doc is saying my low IG is caused by Rtx.
Has anyone heard of this? Thanks for replies.

Dj
empty bucket

[drz]

I have a battery of tests monthly but don't remember that being one of the tests used to monitor my condition. I know the immune-suppressants increase our risk of infections. I know they use my WBC to monitor my risk and would adjust the dosage when it got too low or even stop the CTX meds. They might have checked your IgG levels because of the infection they couldn't relieve.