My Rheumy is looking at putting me onto Rituximab as the Enbrel is no longer working as it should. Any experiences of being on this drug gratefully received please. I am going to the hospital on the 12th to see the biologics Nursing Sister for a discussion about it.
I gather it involves two infusions spread over 2 weeks at the hospital and then it should last for anything up to a year. (A friend has been on it and so far his infusions have lasted 3 years without having more but I gather that is unusual). My Rheumy thinks it should last (if it works for me) about 9 months but could be longer.
I have read the leaflets sent to me but really none the wiser which is why I am asking for more information.
Just realised this should really be a question rather than a post. Oh well, too late now!
LavendarLady x
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LavendarLady
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Hi, I was on Enbrel for 9 years before it became less effective followed by 9 months on Humira which could not keep my RA under control. Tried Rituximab at the beginning of last year but had no effect at all for me and because of its action could not try anything else for 6 months. No effects at all with or after the infusion and closely monitored throughout and you need to allow most of the day for the infusion. I am sero-negative and was told it does work better for sero-positive. Have since tried Tociliuzimab which affected blood counts and now on Abatacept but also not giving me the relief I would like at the moment.
Sorry this is rather negative but bear in mind every person responds differently to each drug and also I cannot tolerate Methletrexate, Sulfasalazine, Leflunomide or Azothioprine.
Its one of the biologics approved in the UK for use with RA, so that means that studies have shown it is likely to be useful in the treatment of RA, otherwise it wouldn't have been approved. Not that that means that it will work well with everyone - but it definitely makes it worth a try.
Thanks Guys, I don't think I am sero negative - at least no one has told me. I was originally on Humira but had to change to Enbrel as came out in a rash. Been on the Enbrel about 4 years but losing its effect. Can no longer take MTX because of the lung inflammation last year. Have tried Hydroxy (didn't work at all), Rheumy did mention Sulfalazine as a possibility but wants me to try the Rituximab first. Will discuss with the nurse and see what she says as well. At present, Nurofen, Paracetemol, Co-Codamol (not all together!) + back on Enbrel is helping.
I so hate this disease and what it does. LavendarLady x
I'm on Rituximab (like you, my third biologic) and it is working really well for me, although it isn't fact acting. I was told that it could be up to 9 months before I would know if/how well it was going to work for me although in actual fact it wasn't as long as that - more like 6 months as far as I can remember. Like Watson says above, I was told it is often less effective if you have sero-neg RA (which I don't), As for the infusions themselves, at my hospital they give the first two infusions two weeks apart then another two infusions after 6 months then, as you say it's on an "as and when basis". From people I have met at the hospital, one lady was there after a year and really felt she didn't need the top up! And a man I spoke to found it worked but wore off after 4 months (and because it can't be given more often than every 6 months, he was struggling quite a lot). For me, it looks as if it will be needed every year or so. I don't take mtx alongside and can no longer take anti-inflamms so the only thing I take with my Ritux is pred - currently reducing and hoping the Ritux will hold things with just 5mg pred daily. I have had no side effects during the infusions - apart for being very hot and feeling sick a couple of times. Although I usually feel pretty dreadful for a couple of weeks after each infusion - and I don't do well on the high dose steriods which are infused alongside each dose of Ritux - I have had no long lasting side effects and I feel that, for me, it's well worth it for the benefit I get.
If you do decide to go for it, I really hope it works as well for you as it has done for me.
Hi.I am seeing my rheumatolgy nurse this week with an aim to start me on Rituximab. I should have gone on Enbrel 2 years ago and they were even delivered and stored in my fridge. Then it was discovered I had lung cancer (no one seems to know why I got this as Ive never smoked) I had been on methotrexate and ilfludomide for years. Anyway I hope this new drug works for us both. I find it difficult to walk and in constant pain. Im just so worried about the side effects of any drugs i take
. best wishes Jx
Hi LavendarLady. I had Rituximab following two anti-TNF drugs (Infliximab and Etanercept) both of which worked brilliantly but both gave me drug-induced lupus. Rituximab also worked really well, the infusions were fine with no side effects at all and I felt well on it with prednisolone 7.5 mgs daily. I can't tolerate Methotrexate so although NICE recommends MTX alongside any of the biologics it seemed to work fine without. Rituximab was not as 'wow, I can now do anything' as the other two drugs but still transformed my life. Unfortunately, as with the other two, it started messing up my blood results and sadly, I had to stop after about two years. I hope it works for you. It's a very safe drug with few if any side effects and as more and more of these biologics are discovered and used there's going to be one that fits somewhere. The infusions do take up most of your day though -first one is about four hours but you need at least two hours around that for the prednisolone infusion and then the checks following the main drug. Second one is quicker but not by much. If you go to a day case unit to have it at least you get a sit-down (for hours) and you get fed! Very best of luck. One of these days some wonderful scientist will come up with something that takes us all out of the pain and misery that is RA.
Hi Lavendar, I have had my meeting last week to arrange a start date for Rituximab which will hopefully be 1 April if my blood tests are all OK which I shall be having end of this week. (No need for TB test or chest x-rays as had those done April in readiness for Enbrel.) Tillytop has had great response (yay!) and she and the others have said much of what I have been told but they have the experience. I was re-assured it is so closely monitored on your first infusions that if anything started to go wrong such as a reaction .. they slow it right down and try again and they only give you a tiny amount to start with before increasing it. I will take a book I am looking forward to reading and some mags and ipod and nibbles although I know they have a superb facility there with all manner of goodies and drinks and bring you a hot or cold lunch from the restaurant. I was also told 50 days is when they usually see people having a marked positive response but can be much sooner. I would love a quicker response but won't get too hopeful as I know how this med can take time. (Would love to be able to go to a festival in mid August though.) I was told by the biologics sister that the average time to need the Rituxi top up is 9 months, but she has someone who goes for 18 months and then someone who needs it 4-5 months. I think the person you mentioned who can go for three years is very lucky and that is great for them! Amnesia ... hope you are very soon on something which helps you. I didn't respond well enough to Humira my second anti-TNF and Enbrel worked superbly for the first five weeks .. it was instant .. but then nosedived and I got a bad site reaction. JackyL. Watson and Farm .. good luck and hope you soon have relief and the right meds for you. Good luck Lavendar and we will have to compare notes. Neonkitty xx
Hi Everyone, thanks for all the answers. It looks as if it is suck it and see what happens. Will speak to the Nurse next week and see what she says. Surprised it can take so long to kick in - what happens in the meantime? do you still continue with Enbrel etc. also surprised that Prednisolone is infused as well as no one told me that. Oh well. Wait and see. Thanks again. LavendarLady x
I've not heard of other biologics being continued whilst waiting for Ritux to kick in. In my case it was just higher doses of pred until it started to do its stuff. As the others have said, a steroid infusion and anti-histamines and paracetamol are given before each infusion to help prevent allergic reactions. It was a top tip to go with plenty of reading material because it is a long infusion - when they say you will be there all day they really do mean it! I'm usually in at about 9 and leaving at 4 or 4.30 If all goes well. I find that the antihistamines make me sleepy so I find reading difficult - I take my mp3 and listen to audiobooks to while away the time and I find that works well for me.
Hi, From what I can remember I had to take an antihistamine before attending the unit then methylpred was infused (they gave me more then normal dose to try and give me a boost) then flush then ritux then another flush. The infusion is slightly longer the first time. If you take regular painkillers you might want to check your units policy as I took mine with me and could take them as normal. Make sure you take a good book or magazine and take it easy. Try not to worry/panic (easier said than done - I've not managed this yet) and keep hydrated before as the cannula is easier to insert then. S
Must admit I was sceptical about this drug, after 10 years of RA and no other drug helping at all, I felt my life was at an end, then I was put forward for Rituximab, and all I can say is it has changed my life, it has been like a miracle sent from above. I had my first two weekly infusion in March 2013, with hardly any side effects, nothing I couldn't cope with after years of pain,, my second treatment was in November 2013. I am feeling on top of the world, occasional ache, but nothing compared to what I had. I hope this little bit of info helps, but we are all different and have complex bodies. Good luck what with ever you decide. Jenny
thank you Jenna and farm 123. Very positive and very helpful. Will let you all know how I get on. I was told to take a good book when I have the infusions so will make sure my kindle is fully charged with plenty on it. Feel a bit sorry for hubby who will be hanging around for several hours. The hospital concerned is 50 miles away! LavendarLady
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