Rituxan Infusions- Afraid

[Alliand]

Rituxan Infusions. Starting Rituxan infusions along with Azanthopine was recommended by my rheumatologist several months ago; I have as yet not given consent. I am really afraid of the idea of Rituxan infusions. Can anyone share their experiences, good and bad, with infusions. ?? Thanks.

[jgold]

I gather you are in the USA, whereas I am in the UK.

Practice in the UK is for rituximab (Rituxan is a trade name) to be given on two separate day visits to hospital, by infusion taking several hours. A nurse attends every 30 minutes to take various readings and adjust the rate of infusion.

When I was given rituximab I was warned of possible side effects during the process. None of these happened. However if there had been any problems then one would simply call the nurse, who would either reduce the rate of infusion or, if necessary, stop altogether.

I was also provided with a list of possible subsequent side effects, including an estimate of the likelihood of each one. This is standard UK practice for all drugs. Again, I have experienced no problems.

In my case I was given rituximab to replace azathioprine as, hopefully, a more effective treatment to limit / prevent flares of my vasculitis. As I was only given it last November, after almost three years on azathioprine, it is too early to say if the change has been successful.

In summary, my experience so far is - no problems.

[philtw]

Can I ask why you are afraid.

I have had rituximab every 12 months for the past 5 years. I also take imuran and steroids.

No issue. It’s supposed to help. But you won’t have an immune system for 6 months but saying that I have managed not to get any serious infection

[ZiggyDiego]

I've had four Rituximab infusions and it was fine. It takes a long time so I imagined I was going on a long journey and took lots of things to do. I felt very sleepy for the first part of the infusion. The nurses kept a really close eye on me.

I've also had cyclophosphamide infusions which made me very sick (a common side effect) so I was very worried about rituximab. I was planning to go to the ward and calm myself down about it. But then I had to have emergency methyl pred infusions on another ward. I got used to the idea of having infusions without feeling horrible, so when it came to my Rituximab infusions I was fine. But I would have asked to go onto the infusion ward to talk to the staff otherwise.

I do take a friend with me at the start of the day, so I have someone to talk to while they put the cannula in and take all my bloods. Then my friend comes to pick me up at the end of the day. I found that I had no side effects after the infusion: it's frustrating waiting for it to work but the doctors tell me to be patient.

It sounds like it might be helpful to talk to someone about what you are afraid of, specifically, then it's possible to work out some ways of supporting you. All the best, Wendy

[Llinos]

Hi, I'm off to have my Rituximab infusion today. I have been fine after every one I've had. The worst bit is the damned blood pressure machine. I think it hates me as it insists on inflating twice!!

Like Ziggy above, I have my son drop me off and pick me up so that I dont drive and apart from tiredness it goes well.

Got GPA for 20 yrs and after a flare up in 2015, this is my 12th infusion (4 per year).

Good luck and hope it goes well for you x

[Jeffo]

Hi Alliand,

My previous treatments were with Cyclophosphamide and Methotrexate and Prednisolone. Since then my Rheumatologist switched my treatment to Retuximab. I have had two infusions with Retuximab (retuxan) and yes, initially I was a little concerned re side effects etc but having had Cyclophos and other infusions previously, I found Retuximab to be incident free. My only "reaction" (if you could call it that) was a very slight tingling in my throat and was given Antihystamin (piriton) purely as a precaution. I am due for my third Retuximab in May and looking forward to it. It is working for me AND I don't get the dreaded effects of Methotrexate or Cyclophos which was a dread. I am sure everything will be fine for you so sign the form, you won't regret it. Best wishes.

[Tunabird]

Had 4 treatments of rituxan in the hospital last year... With no problems. Since then I am on daily azathioprine with no problems. Not sure how both would be together.

[Keithtim10]

Hi Alliand i have been on Rituximab now nearly 2 years and it has been fine for me the only thing i can say is whilst i am on it the consultant had stopped my Azothioprine and still i am not taking it.But as for the Rituximab it has been good for me to keep me in remission and not seen any side effects.Hope this helps good luck.

[Alliand in reply to Keithtim10]

Thanks to all of you in the chain about my fear of Rituximab infusions. Since learning of my temporary left eye vision loss ( indicative of GCA) and continuing shoulder pain and feeling chronically unwell (but not really sick either), my rheumatologist has prescribed oral Methotrexate once a week (15 mg. total) and 1 mg. folic acid every day in addition to continuing Medrol, at 12 mg.daily. More blood work, shoulder x-rays, chest x-ray , neck x-rays taken, results pending. She told me the Methotrexate does not really kick in for 6 weeks at which time I will return; physical therapy referral as well.

If that does not start a complete remission or prevent another relapse incident , then Rituximab infusions it will be, and , given your assurances, I will consent.

The consulting vasculitis expert I saw at Johns Hopkins in Baltimore, MD concluded that I was on a spectrum of inflammatory arthritis which I guess was a way of saying that an inflammatory process was ongoing, but not sure what. However, when I saw her, I had not as yet had the loss of vision incident and my PR3 C-ANCA titre was at 1.1 at the local lab, after months on Medrol and the reference values at Johns Hopkins is 20 or greater to be diagnostic of GPA; there I was less than 2.3.

It seems that labs in the UK and US use different ANCA range parameters, and a difference between Johns Hopkins and our chain of Quest Labs in the US differ as well. The antibody was detected in both at low titres.

I don't think the titres correspond to symptoms or levels of wellness or not, but may serve as guides as to an increase or decrease in disease activity, or indicate an oncoming flare or relapse.

Again, thanks to all reassurances. For anyone who has been on the Medrol/ Methotrexate by mouth combination, how did it go?

[asilanna in reply to Alliand]

Hi I have PAN and took methetrexate and was fine on it for a while but then it stopped working. I got eye involvement and had ritiximub last Jan feb and I feel better than last 10 rs.i was scared about going on it.but best thing iv done for myself.im down to 1mg of pred and finish tomorrow for good.have lost 5 stone too because steroids made me fat.do it.you will feel much better.

[Alliand in reply to asilanna]

Hi asilanna,

Thanks for your reassurances; I am now on 12mg methylprednisone daily, and just started on 15mg.of methotrexate which I am instructed to take every Monday with folic everyday. Blood work was good exept for quite high neutrophil count. I am not sure if the high neutrophil count is from vasculitis or prednisone ? It is the neutrophils that are attacking the blood vessels, I believe in vasculitis. If I need Ritiximub in the future, I am now reassured by you and a number of others, Thanks for your reply,

[jenwide70]

I did it back in 2012 and no side effects. I am active now and I got three options I think I will do the rexiumb again cause the other two pills sound scary to me. It did put me in remission for 6 years

[Puttystuff]

My fiancée just had his first two rounds of Ritx and we are waiting to see if it makes him feel any better. He is ANCA positive with just sinus involvement and has been on Perd since January with no improvement so I’m hoping this helps. He’s 38, we’re getting married in less than 2 weeks and he had to stop work last year because of this crappy disease