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 ?
:w00t: :confused1:

[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.

[Sitolini]

Hi Guy, here is my son story ... He was dx in Feb this year, my wife and I brought him back to our town (he was leaving 4hr away from us). The drs prescribed 4 doses of RTX, the first 3 doses he took here in town, before the infusions they gave him a dose of Benadryl. The side effect for him was that he was very tiered after the infusion and slept for couple hours (I believe was more for the Benadryl than the infusion). Before his last infusion he was feeling very well and want to take his last dose in the city he leaves (freak young adults), so off he went. He moved back, and on the day of last infusion he got on the bus to the infusion center took the dose back to home. Next day work and life was good. A week later his whole upper body was full of red dots (bumps) and blister in his arm and groin area, he came back home and after 3 weeks of visiting doctors we find out that he had got impetigo ( the blisters) and Scabies ( the red bumps). Bottom line, yes there is a possibility of side affect with the medication like any other medication (simples a latex) so don't worry about that, but have in mind that after treatment you are going to be a Bubble boy, be aware of your environment and people around you be selfish in regarding your health. Good luck and God bless you

[pberggren1]

I know some Weggies have been using rtx for over 10 years.

[Empty bucket]

Yes and I have used RTX for almost 4 years with zero side affects. But now my IgG is low (225) and am being told its because of my Rtx infusions back in feb. 2013. Anybody else have low IgG levels? If so, were you ever told it was the RTX that caused it?

empty bucket

[Debbie C]

Hi empty bucket, I was only given a rtx infusion 1 time ( I was supposed to have 2 ) but I had flu like side effects and very tired....just wanted to sleep all the time so my reumy won't let me have another....at $16,000 a time I'm not going to have one even if they want me to. The thing with me is I am not good at doing drugs for some reason I always have bad side effects. I have been only on 5 mg pred for the last year, I was in remission for about that long until I had a ct scan of my lungs about 2 mos. ago and I have 2 -2mm & 2- 5mm nodules.I go back to the Cleveland Clinic the end of July so I'll see what he plans for me then..BUT for yr question I looked back at my blood work ( my hosp. puts them on the comp for me ) and I can't see where my IgG levels have ever been checked, I have to have blood work done every month and I'm wondering if this is something that should be checked ??? Does everyone else have that checked ?? Sorry for the rambling,I tend to do that once in awhile but I hope they get yr levels back to normal soon. Good luck and take care

[rebekah]

I had 4 Ritutxan infusions (1 a week for 4 weeks) in February when I had my flare. It seems we all have slightly different reactions to the treatments; the only side effects I had were nausea and chills, but warm blankets helped. By the third infusion I don't remember having any reaction. I was also given Benadryl so I slept through part of it. I had the infusions without checking with my insurance (I'm a dingbat and didn't think it would be that expensive). At $16,000 each, I'm stuck with another large medical bill, so I recommend checking with your insurance and getting approval first. Hopefully if yours doesn't, your doctor can try to get it approved for you. I hope you feel better soon. :)

[Empty bucket]

Hi empty bucket, I was only given a rtx infusion 1 time ( I was supposed to have 2 ) but I had flu like side effects and very tired....just wanted to sleep all the time so my reumy won't let me have another....at $16,000 a time I'm not going to have one even if they want me to. The thing with me is I am not good at doing drugs for some reason I always have bad side effects. I have been only on 5 mg pred for the last year, I was in remission for about that long until I had a ct scan of my lungs about 2 mos. ago and I have 2 -2mm & 2- 5mm nodules.I go back to the Cleveland Clinic the end of July so I'll see what he plans for me then..BUT for yr question I looked back at my blood work ( my hosp. puts them on the comp for me ) and I can't see where my IgG levels have ever been checked, I have to have blood work done every month and I'm wondering if this is something that should be checked ??? Does everyone else have that checked ?? Sorry for the rambling,I tend to do that once in awhile but I hope they get yr levels back to normal soon. Good luck and take care

Ok Debra C that is the question here. Has anyone else who has had Rtx infusions once or many times gotten there IgG levels checked? I didn't! Been on Rtx for about 4 years. Had blood work many times but not for IgG levels. I read up on Rtx and it can/will definitely lower your IgG. Anybody else know this? Shame on me for not knowing!

Dj

[Alysia]

only lately I checked my IgG, about a month after the RTX IV. it was normal, although lower then it was some years before.
It is important to learn from you, and to include checking it into the routine of bloodtests.

[Debbie C]

Maybe that's why they never check my IgG levels,is because I only had the 1 rtx infusion. I'll have to ask my dr. when I see him. Are they getting better yet ??

[Empty bucket]

I'm not gonna check my IgG levels until the end of July. I went to see my old rumy yesterday and he advised me not to do the immunoglobulin infusions. He believes my levels will rise back to normal. So that's what I will do. No infusions of Privgen which is human immunoglobulins made from thousands of blood donors. Im not at all happy about my current rumy. I seldom see him. Mostly I see his PA. My old rumy was shocked to learn that they prescribed Privgen infusions for my IgG level. So I'm switching back to my old rumy which had moved to a different clinic. He was very glad I reached out to him for a 2nd opinion. Something very interesting is that he told me he doesn't use a PA because he likes to get "in front of his patients".