Careful with rituxan

[Seaberry]

I had six cycles of rituxan. You are right! Great drug. But it wiped out All of my B cells. I did not know. Just that I was sick constantly. Now, I not only can never take rituxan, but need IGG infusions every four weeks the rest of my life for decreased IGG and do not make good Immunity to immunizations because iGM is low. Known risk but no one tells you. Make sure they are monitoring your B cell regeneration before each infusion

[Lolabridge]

Oh dear I did not know about this so thank you for the warning. I’m sorry to hear of your predicament and hope you are getting good care.

[Kerensa21]

Thank you for posting, I didn’t know that about it tho’-knew about other risks with it. Interested as this has been suggested next for me if current one fails to GP (only found out as saw letter on her computer screen, no one thought to mention to me!) I do not know what it is with failing to inform patients; it makes me feel like an object to be enacted upon not a human being. I am so sorry that’s happened to you truly awful x

[sunnyweek]

I'm so sorry this has happened to you and I trust you are getting well looked after.

Do you know whether they tested your b cell count before each cycle. I think the blood test is called the retuximab panel.

I hope they can find a treatment which will be as good as retuxan for you.

[Pam-51]

The condition is called Rituximab induced hypogammaglobulinaemia. I was diagnosed in 2017 after a nightmare five years of repeated infections including shingles five times, campylobacter and numerous chest infections. Been on Rituximab since 2008 and continue to have regular infusions, though the dose has been reduced by 50%. Fortunately the drug is still effective in keeping my RA controlled.

Was on IV infusions of immunoglobulins for a couple of years but now on weekly subcutaneous infusions which my husband and I do at home. Much more convenient than regular hospital treatment and I have been told this is now the treatment of choice.

What I am wondering Seaberry is why we seem to be getting very different treatments. Did your consultant tell you why you cannot have any more Rituxan? If Rituxan worked for you then surely once the damage is done and you are receiving immunoglobulins you could continue with the Rituxan as I have done.

Since this happened to me I keep posting on the subject and people should be aware of potential serious side effects of not just Rituxan therapy but other biologics. Despite all my problems I do not regret having Rituximab as it proved to be life changing for me damping down my very aggressive long-standing (45 years) disease.

Anyone else out there with this issue? Would be interested to know how many people this affects.

Best wishes Pam

[Pulfs in reply to Pam-51]

I'm on retuximab but didn't know anything about what you've listed. Does the blood test that is done before each round of infusions pick up any of these problems do you know.??? X

[Seaberry in reply to Pulfs]

Depends on what tests they are doing. I was having lab work that never indicated a problem. They need to be monitoring regeneration if B cells. Someone suggested IGG. But if your B cells are OK it would seem your IGG would be. But that is beyond me

[Pam-51]

Yes. Your blood test done before infusions should include a measure of immunoglobulins. Just check with doc and monitor your own bloods. The problem I had was that results had been overlooked and the levels should have rung alarm bells in 2012. It was only when I did my own research following all my infections that I suspected a problem with my immune system. When I approached my Rheumatologist and told him of my suspicions that he confirmed the diagnosis. I just make sure that now I monitor all my results.

Good luck with the Rituximab.

Pam

[Seaberry in reply to Pam-51]

I was not so lucky. I kept talking to an ex Rheumatologist who kept ignoring that I was complaining of being sick all the time even tho B cells were 0

Was lucky when went to see pulmonologist for lung issues he listened to history and did bunch immunological tests.

[Pam-51]

So sorry you have had such a hard time. Maybe if we keep pushing the issue it won’t happen to others. We all need to be aware of side effects and make sure we monitor our own health. Do ask about the sub-cutaneous infusions as I find it much better. My immunologist says it is better as levels of immunoglobulins are kept at a more constant level. Having IV infusions 3 weekly as I was makes levels vary as they go down between infusions.

Pam X

[Seaberry in reply to Pam-51]

I do not know what kind of IGG infusions you were getting but mine are once every four weeks, same time as my Actemra for my RA and my levels every time tested always quite stable. This works great for me

[Leics]

I’m so sorry yet another patient with RD has been left without monitoring. I am the same I’ve had no working immune system for over 6 years as a result I had zero treatment for that amount of time too. My immunoglobulins are in my boots they will never recover and the last few years have been hell. I need ivig or subcutaneous immunoglobulins but unfortunately I can’t get funding (shortage nationally). Only good news is I have a great rheumy now who has started me on baricitinib and is monitoring me VERY closely so I’m a little better than I was. No change in immunoglobulins though. It was rituximab that knocked my immune system out and I think I had 3 rounds in total. I hope they look after you now and you get a good immunologist that keeps you healthy too.

[Seaberry in reply to Leics]

Are you not in US? Try getting IVIGG. In US it is paid for like treatment not drug. Yes there is shortage in some brands. But can get others. One IV treatment every four weeks

[Leics]

I’m in the U.K it seems funding is an issue as well as supplies or so I’ve been told. But I’m sure if I can try to remain sort of healthy as far as infection is concerned I will be able to get away without ivig for a while. Prophylactic antibiotics are helping to keep me infection free although I don’t tolerate them very well and am severely allergic to many. I hope your immunoglobulin therapy helps you to sustain a treatment plan for your autoimmune disease.

[StormySeas]

Thanks so much for posting this.

I’m also on Rituximab and it’s had a very beneficial effect on my symptoms.

I had a bad flare last year, about 9 months after my first treatment, and after the rheumatologist checked my B cell levels I had another course.

Now, a year on, I’m noticing a return of symptoms and contacted the rheumy nurse to ask if she thought I should have the B cells checked again

The CD19/20 test shows mine are about 33 cells/uL, but I've no idea whether this is a significant repopulation or not, or indeed what the normal levels are. I know the scale is from 1 to 500.

Do you know what normal levels are? I am aware that Rituximab might not work (or be suitable) forever and now I can really see how much it’s helping I’d like to be proactive about maximizing the time I can take it.

The more we’re involved in the monitoring of our own treatment the more knowledgeable we become, and that can only be good.