Rituximab Infusions

[Nannalyn]

My Rheumatologist advised to stop the adalimumab injections because of my hair loss and has recommended a six monthly Rituximab infusion.

Has anyone experienced this treatment - for better, or, worse?

[KittyJ]

if you put that into the search box and filter for NRAS then all the past posts about it will come up.

[Nannalyn in reply to KittyJ]

👍Thank you, will do.

[Sainsburys]

I’ve been on ritiximab for a while now and it does work for me. By time 6 months is up though I am certainly ready for the next one! However have spoken to others there that are having it and some people say it lasts them for a lot longer and one lady said she had 3 years relief from it.

[AgedCrone in reply to Sainsburys]

Hopefully you will find that you will be able to go longer between infusions as time goes by. Don’t get drawn in to the idea that having it 6 monthly forever is the only way it is successful.

I have been on it since 2016,& it has been a complete life changer for me…I now have it on demand, & can go 9/12 months between infusions. In fact during covid I went 15 months between infusions.

[bpeal1 in reply to AgedCrone]

That’s great that you can go longer between infusions but for some of us that isn’t an option. I’ve been on it for about 10 years and it still works well however by about 5 1/2 months I know I’m definitely ready for the next one and sometimes I need a steroid injection to tide me over until the six month mark. However I’m more than willing to give up 2 days every six months for the relief it gives me.

What I’m saying is that for some people they can reduce the number of infusions (ie 1 rather than 2 each time) and /or leave a longer gap between them which is great because why would you want more than you need but for others that isn’t an option but it’s not a problem.

[AgedCrone in reply to bpeal1]

Exactly….I was stating my own experience which is all one can do….

I think people new to any drug should realise that the more often you take a drug,& how high the dose doesn’t necessarily mean much. It also doesn’t mean you are more seriously affected if you take more than other people, we all have our own tolerance levels.

But with Rituximab, it really is one of the most convenient drugs I have ever taken….& even giving up the maxumum number of days per year is well worth it. Now if I could go back to the hospital 5 miles away rather than the one 25 miles away Rtx patients have been moved to….…I would be really satisfied.

[cathie in reply to bpeal1]

I agree - I went for 9 months between infusions and certainly felt it. We all have to judge what we need for ourselves. My main concern with 'on demand' is that it depends on having a responsive rheumatologist, which is the case for me. So far havent been affected by drug shortages either but I do feel inclined to signal the alarm a bit earlier these days. It has worked well for me and hope it does for you.

[Bookworm55]

I had my first ritixumab infusion last week- second one next week. No problems so far and really hoping it works for me - and you.

[WilfDog]

I've not been on it myself but it was a consideration for me if etanercept didn't work. I've heard many people sing its praises, so hopefully, it's a positive change for you. I'm sure there will be many people on here that are on rituximab so you should get a good response. Good idea from KittyJ to do a search for it. Good luck with it. x

[Nannalyn]

Many thanks to all the respondents and your reassuring comments. It is quite worrying when reading the information supplied by the biologics dept of possible serious brain infections (PML) and of body hair loss and alopecia.

Hopefully, will be all OK 🤞🤞🤞

[Lolabridge in reply to Nannalyn]

Please don’t worry. I had no problems at all with Rituximab and it worked very well for me. PML is incredibly rare so don’t even think about it, and I had no side effects other than getting some minor infections, which are likely to occur when on any of the biologic medications.

Hope it makes you feel good again!

[Pulfs]

I’ve been on retuximab for nearly 13yrs , 6 monthly. Started with 2 infusions now only on 1. It works for me and helps the fatigue but I know when it’s time for next as fatigue gets worse . I have appointment with RA nurse to discuss things and she arranges the next appointment . Hope it works for you x