Rituximab or Infliximab?

[Smartiepants]

Hi I'm new to the site and was looking for some advise. I've had RA for 7years and despite all the usual tablets tried, none seemed to have helped me. My specialist has now offered Rituximab, but after reading the side effects mainly PML I am terrified. I have looked at the alternative Infliximab and would love to hear from anyone who's on either medication. Also does anyone know if influx iamb causes weight gain? Thanks

[earthwitch]

In a lot of ways the anti-tnf drugs actually have a much safer profile than relatively common things like NSAIDs. Try not to worry too much about the side effects. Yes, there are some fairly serious ones, but they are rare. A lot of the scary stuff about these drugs came out in the very early days of using them, but they have done a load more studies now as they have been used for much longer and on much more people, and really they aren't anywhere near as dangerous as they thought they were. Also, to put it in perspective, just look at the side effects list of even very commonly used drugs - there are rare and very serious complications in there too. Nothing is 100% safe for everyone, but if the potential benefits are really good, you have to balance it.

Uncontrolled inflammation could well be as likely to cause extremely serious complications (such as secondary amyloidosis) . Also on the positive side, so many people have had absolutely wonderful results from the anti-tnfs so you could be missing out on that opportunity if you don't try them.

I'm not sure that there is really much difference in side effects between them, and from other people I know, they have usually made the decision on how they are adminstered (eg, infusion in hospital, or self injection, and how often they are injected). If one of these drugs helps relieve your RA totally, and you can be far more active, then I don't think you need to worry about weight gain (though I haven't heard that happening at all with these drugs).

If you are worried, try and have a chat with a rheumatology nurse or rheumatologist.

[Tillytop]

Hello and welcome!

I am on my third "biologic" drug - have had Infliximab and Humira in the past and am now on Rituximab.

Infliximab worked brilliantly for me for 5 years - and during that time I was genuinely pretty much RA free! Unfortunately I had an allergic reaction to it and had to stop - no lasting side effects though and I would have it again tomorrow if they would let me! Humira worked nearly as well for me - but disagreed with me after nearly 2 years so, again, I had to stop. All the associated side effects disappeared once the drug got out of my system though. Rituximab is starting to work for me now and I have had no problems with it so far. I know that not everyone is so lucky, but for me the biologics have been pretty much miracle drugs!

I completely understand your concern about serious long term side effects - and from my reading, the list of potential side effects is pretty much the same for all of them. BUT, the more serious side effects are, as I understand it, pretty rare and, these days, I tend to take the approach that I would rather be as well as I can be NOW, rather than not taking a drug which might help because of the possibility (albeit rare) of problems further down the line. Also, we have to remember that RA is a powerful disease and powerful meds are needed to try to manage it. And the side effects leaflets for the other RA meds make pretty scary reading too if you dwell on it too much!

In terms of differences between Infliximab and Rituximab based on my experiences and what I have been told - for me, a key factor is the length of time before you know if they are going to work for you. When I started Infliximab, I hobbled into the clinic and came walking almost normally! I did go backwards again quite quickly, but, after a few infusions, when it really got into my system there was no stopping me! I was told when I started Rituximab that it could be a year before I knew whether it would work for me. Actually, just a few months in, it seems to be starting to help though. I think I am also right in my understanding that Rituximab does not work so well for those with seronegative arthritis but I am sure you consultant has factored this in. Rituximab isn't normally given, I don't think, as a first biologic - my understanding is that usually someone would start with one of the others - Infliximab, Enbrel, Humira.

Hopefully you can be reassured by the fact that, because both Infliximab and Rituximab are given by infusion in hospital, that you will be closely monitored and any problems picked up quickly.

Forgot to say that I can't take methotrexate and the consultant has told me that if I had been taking methotrexate alongside the biologics, I may well not have become allergic to them.

I completely understand your worries, but really hope that if you do start on biologic meds they will help you as much as they have done me.

Tillyx

[Tillytop in reply to Tillytop]

Something else I forgot - weight gain. I certainly had no problems with weight gain whilst on Infliximab. Actually quite the opposite. Because I was so well, I dropped the steroid dose hugely, and started being physically active again and the weight just dropped off!

Tillyx

[Smartiepants in reply to Tillytop]

Thank you Tilly

I was on Enbrel in early 2010 but couldn't get on with injecting myself. I'm ok if a medic does it but can't physically do it myself! I thought I would ask to go onto Infliximab

I spoke to my RA nurse today and she said I would not be offered Infliximab as I have been on Enbrel, so my only options are Rituximab or Tocilizumab.

[Tillytop in reply to Smartiepants]

Hello again!

I'm sorry you couldn't continue with the Enbrel but what you say about being offered Rituximab is in line with current NICE guidelines which (if I remember rightly) say that if you have failed on one biologic, you move to Rituximab, rather than working your way through the other anti-tnfs first. I'm not sure how Tocz - sorry can't spell it - fits in though and I don't have any experience of that one.

Really hope that whatever you do end up with helps you though.

Tillyx

[Judetheobscure]

Hello

I'm not sure if you know, but it is possible to ring the NRAS helpline (0800 298 7650) and ask them to arrange for you to speak to a telephone volunteer who has RA and is using the drug/drugs you are concerned about.

Someone on the Helpline would be able to discuss side effects with you and the difficulties you have experienced with previous medication. You speak of tablets only so assume this is the first biologic drug you have been offered. There are several biologics that are approved by NICE and again the Helpline will be able to tell you about them all.

It would be a good starting point for you. Whenever I become worried about side effects I remind myself that RA left uncontrolled can potentially do far more damage to my body than possible side effects of the drugs on offer. With regard to weight gain I think steroids are the main culprit for that but again NRAS will be able to advise.

[SarahKate-NRAS]

Hi Smartiepants

It looks as if you've already had some very useful responses but I thought you might also find it helpful to read the information in our 'Biologics' booklet. Both rituximab and infliximab are included, and a little bit of information about the biologic drugs in general: nras.org.uk/help_for_you/pu...

As Earthwitch mentioned, many people make decisions on which biologic to choose based on the method of administration, as unfortunately there is no way of knowing which drug will work best for you before you try them. The biologic drugs have significant benefit for lots of people, and after 6 months of treatment about two thirds of people have usually improved. I have looked in the patient information leaflet for both these drugs and weight gain is not listed as a recognised side effect of either so hopefully this would not be something to worry about.

I wish you luck with whichever drug you choose.

Kind regards

Sarah Kate

NRAS

[Smartiepants in reply to SarahKate-NRAS]

Thanks Sarah,

On speaking to my RA nurse she said I would not be offered influx iamb as I had previously tried Enbrel. would you know why this is the case?

Thanks

[Smartiepants]

Thank you everyone for all your advise