Sorry, this is a long post and thank you for reading it.
I have been on the biologic weekly injections ETANERCEPT (Enbrel) for over 12 years. This treatment worked very well for me for a very long time. However, it has stopped controlling my RA since I have had 2 total knee replacement operations last year. My rheumatologist added Methotrexate injection to support the Etanercept after the operations. I add to stop using Methotrexate because it makes me quite ill. She then suggested I should have Abatacept, but my local hospital CCG insists I must have Methotrexate with it. Yet I have read research papers stating Abatacept monotherapy does work. The odd excuse the CCG give is that it is cheaper to use both injections. Frankly, I do not see the logic in that, how 2 injections can be cheaper than one?.
Because I cannot use Methotrexate, ruling out Abatacept, the rheumatologist then suggested infusions of Rituximab, which suppress B cells. Then I received another letter informing me I will have Trixuma infusions. After checking the information on Truxima I was quite concerned when I found out this biosimilar was only licensed on 17 February 2017, so just 2 years ago, and that it carries a black inverted warning triangle indicating that the long term side effects are not known yet. I also read that the depleted B cells cannot be replenished therefore making the patient's immune response ever weaker and the patient is very susceptible to developing serious infections. I have therefore decided I do not wish to have this treatment.
I am very worried because I need to proceed with another biologic treatment, my RA is not well controlled anymore but I do not wish to put myself in a dangerous situation. I have also heard from people who had had Rituximab infusions that they had a very rough and difficult time for 10/12 days post infusion and the same after the second infusion 2 weeks later. Very ill indeed.
I would really appreciate hearing from as many people as possible who have had Rituximab infusions as well as from people who have had Truxima infusions. Where you feeling quite poorly post infusions, and how long for? What were the side effects you had? Has it made you more prone to infections? How did it help, or not? Are you having the infusions together with Methotrexate or without it?
I would appreciate hearing from NRAS support team too.
Strangely enough, although the guidelines recommend the use of Methotrexate with these infusions, the CCG is prepared to let me have these without using Methotrexate. Yet, they won't let me have Abatacept without Methotrexate. It does not make any sense.
Many thanks for reading this long post. Looking forward to getting your feedback.
Kind regards.
Written by
JGBH
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Most biologics require Methotrexate to work well. I never took it with Enbrel or Remicade and was very well for 14 yrs.
Eighteen months ago the Remicade started failing and I’ve been on Xeljanz, Orencia and Actemra - all with Methotrexate. I’ve never had side effects.
None of those biologics worked and I had my first Rituximab infusion 12 days ago. It didn’t make me feel unwell but my hands have been flaring since - so much so I’ve had to increase the prednisone I take. I am not familiar with Truxima, is that new?
I am in the middle of a very difficult time finding no relief with anything other than steroids. I hope you find a solution to your drug regimen. Meanwhile I am still hoping Rituximab works for me but I have a sneaking suspicion my days of pain free are over.
Thank you for your prompt reply. I am sorry you are going through so much pain at the moment. What a life for us all!
You said you had Orencia before, that is Abatacept. How long were you on it for? And how long were you on the other biologics you have tried.
I was on Remicade infusion, for a few years, when the first biologics were offered then I went on to Enbrel. I think this has been the best biologic so far and it is "relatively" safe in comparison to other biologics. I feel quite sad it has stopped working for me after so many years when it gave me my life back. Like you, I now fear my relatively pain-free years are over. Frustrating and depressing.
I think many of your present symptoms are due to Rituximab: I have read so much research papers and been in touch with a few people who have had the infusion. Lots of pain in joints, muscles, high temperature, chills, total exhaustion, headaches, nausea, etc. have been reported frequently. Have a strange feeling that biologic does not really work that well for most people. I could be wrong and I hope so.
Truxima is the biosimilar of Rituximab and has only been licensed for use 2 years ago carrying a warning (but one has to do the research, they do not tell you that in rheumatology!) that long term side effects are not known yet (because it has not been in use for very long. Therefore, I am not keen to try it and will let my rheumatologist know as I have appointments for the infusions on 14 and 28 March. I will carry on with injecting Enbrel until such time my rheumatologist finds something else for me.
Can you tolerate Methotrexate? It makes me feel as though my system is poisoned.
I too am on Prednisolone. Have been on it since August, after my second knee replacement operation as my RA was flaring up so much. I was on 20mg for a few weeks, then GP stopped it and the flare-up kicked in again, so back on steroids, 10mg/day. I have been trying to taper but it's very difficult, more so because the RA is not controlled as it used to be. Am on 7mg/day and should have reduced to 6 mg/day yesterday, but could not do so because of the pain. It's so difficult. Since I have been on steroids I have put a lot of weight on. From size 10 to 12 I now need size 14 to 16... so worrying. It feels so odd and difficult carrying the extra weight. Having osteoporosis it is not a great idea to take steroids but no choice at the moment because of pain, as you are only too aware.
Hi again I have had 2 lots of infusions 6 months apart, due third lot about May. Was really worried about side effects but experienced none. Only on rituximab. I was really worried before but no problems
That sounds positive so thank you for the reply again.
It would be helpful to receive more feedback from other people as I need to decide whether I will go through this treatment or not.
Are you certain you had Rituximab infusions and not one of its biosimilar called Truxima? This was only licensed 2 years ago and long term side effects are not known at this stage. I was first told I would get Rituximab then received a letter to say I would have Truxima. Whilst Rituximab has been used for quite a long time, long term effects have been noted. This is not the case for Truxima, hence I feel quite nervous about having such an infusion and don’t really want to be used as a guinea pig.
In response to your questions, I was on Orencia for 6 months with Methotrexate and it was a complete failure. I was also on Actemra - again a failure. I've never had issues with Methotrexate. I also have PMR (Polymyalgia Rheumatica) - if you are not familiar it's an inflammatory muscle condition which is horrible and I have a left shoulder impingement which is also horrible. When you add the three conditions together I've been dealing with a lot of pain off and on for 18 months since the Remicade failed. No two days are the same. Consequently I don't believe Rituximab is responsible for my stiff neck and headache. I have a lot of referred pain going on from the shoulder and the PMR.
If I were you I would not be trying to taper the Prednisone. I've given up on that and have even gone up from 10 to 15mgs in order function.
I understand you too have to put up with much pain! What misery. Do hope you can get some relief from time to time.
I might have PMR. Not 100% sure though, but the addition of prednisolone did help in relieving the pain. I was recovering from my second total knee replacement operation at the time when the RA flared up badly. Could not lift a spoon to my mouth to eat. I had 2 knee operations within a year, which is a lot for my body to cope with, I suppose. Since then my Etanercept has not been controlling the RA as well as it used to for many years. Hence I need to start a new treatment but am really worried about rituximab but more so about Truxima (it's biosimilar), only licensed in past 2 years so it carries a warning that (as expected) the long term side effects are not known. Also the half-life of rituximab and truxima are not really known but assumed to be probably long, which mean if one can't cope with such a treatment then the drug is still in your system for a very long time although the treatment has been stopped. This is rather serious and worries me.
Do wish you better days. It's so hard to live with such a lot of pain, all of the time.
Hi I cannot take methotrexate tried it 3 times. Had second infusion of rituximab and had no side effects. I was told each time more would stay in my system and I would have less pain. Seems to be the case so far.
So, you did not get nasty side effects post infusions? No pain all over? No headaches?
Best wishes.
My DIL has Truxima every six months without Methotrexate. BTW if you want support from NRAS, you'd do better posting on their community. This is Arthritis Action Community.
Have t?amen Rutuxin for two years best thing I ever did...no mext. No. Longer take prednisone...have not had flare since I started it....I will admit to having the best two years, yet....we'll see how next one goes.....hang in there.
Hello kikolee and thank you for your positive feedback. So pleased Rutuxin is helping you, may it last for a long time.
However, would you tell me whether you had dreadful side effects post the infusions as many people have reported, namely: extreme pain in joints and muscles, headaches, nausea, itching all over, high temperatures, night sweats, chills, dizziness, utter exhaustion etc.? These were reported to last from 10 to 12 days post infusions. Also how long did it take for the biologic to kick in? I already have many of the symptoms reported so am fearful I will get totally unable to cope, living alone is not a prospect I relish.
Do you know how long the biologic half-life of Rutuxin is? From reputable research, I have read that the half-life for Rituximab and Truxima (the biologic I am supposed to try) is still unknown but likely to be long-lasting. That implies it will stay in the immune system for a long time even if and when the treatment has been stopped. This also implies the patients remain open to more serious respiratory infections and other diseases. Quite dangerous when one's immune system is already so depressed. I don't feel I am ready to take such a risk at the moment.
However, I wish to hear from as many people as possible so that I can finally decide what to do. Am writing to my rheumatologist to let her know how I feel and seek her opinion. When I saw her in the clinic she did say I would have Rituximab but then sent me a letter to say it would be Truxima! Truxima has only been licensed for 2 years and the long-term side effects are still unknown. So it's a NO NO from me. do not want to be used as a guinea pig and finding myself in a worst situation. Nevertheless, I need further treatment to control my RA. Complicated.
I am on Truxima. The Ritux biosimilar. I wanted Ritux but cash strapped budgets mean no chance. I have had the 2 infusions and felt fine throughout. I have had no side effects...yet! However, I thought at 4 weeks I was getting a very slight improvement and reduced Prednisolone to 5 then 2.5 mg. Struggled but persevered and now ... nothing. 7 weeks from first infusion and back to 7.5 Prednisolone and pain relief. I dont take any Methotrexate and never will as judged intolerant.
Thanks for your reply. Glad it’s working for you. Unfortunately it has not worked for me at all and o am on 12 mg prednisolone still, have put a lot of weight on... and on-going! Never used to be overweight but on steroids for over a year now.
Am now on Olumiant (Bariticinib) a Jak inhibitor. Small improvement but not sure it will work. Really worrying as my RA is obviously progressing fast now and also have osteoporosis plus other problems.
Yep. I tried to get Rituximab original (Mabthera) told couldnt have it so had to have Truxima. No problems at all with infusions and side effects were nil. 7-8 weeks since first infusion and feel rotten. CRP has doubled from September and back on 7.5mg Pred daily. Put weight on and so this viscious circle continues
Truxima is useless! What a waste of money using this cheap version! It didn’t work for me, as you say, so much pain. Am now trialling another biologic in pill form. It’s called Olumiant (Baricitinib). Not sure it’s working properly yet but need to give it more time. Have been on prednisolone for over a year, 12 mg. have put weight on hips , abdomen, thighs and face! Seeing rheumatologist in January and perhaps I will be able to start reducing steroids very slowly.
What are you on now for RA?
It looks like we’re not offered the top drugs now, the best giving us some kind of life back. Worrying .
Indeed all my inflammation markers were sky high, still high now.
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