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Scleroderma & Raynaud's UK (SRUK)
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Rituximab

Hi everyone - I'm new on here.

I was diagnosed with Limited Sys Sclerosis last year and have been taking Methotrexate and Hydroxychloroquine. Unfortunately this medication has not really helped. My consultant has now suggested an infusion of Rituximab. However, I was a bit put off when she mentioned that 1 in a million (yes I know that's rare) may get a condition which is easier to describe as mad cow disease. I was just wondering if anybody has had the Rituximab infusion, and what if any side effects they may have experienced?

Thank you

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Hi and welcome to this wonderful community. I have been having Rituximab infusions for just over a year now for Diffuse Sys Sclerosis. Yes there is a 1 in a million risk of getting PML but the risks are explained and in probably your case as well as my own, sometimes the risk can be worth taking. Your blood pressure will be closely monitored as it can drop quickly. Side effects wise I was ok until the night when I got the shivers and shakes and had a slight fever. But these didn’t last long for me and with good rest for the first day after treatment I was good to go. Having said that everyone’s immune system is different and I’m also still taking MMF alongside it but at a reduced dose. But sadly this hasn’t worked for me so I’m now due to start IVIG instead which I’m hoping will finally be the drug to work.

If your dr is suggesting this drug and he thinks it will be something to help stabilise your disease what do you honestly have to lose? It’s a big step but most drugs carry a risk and you will be in good hands when your having the infusions. Goodluck and no matter what you decide I hope things go well🤗

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Hi Cole57 - thanks for your reply, which is really appreciated. When you say you are also taking MMF alongside the infusion but it didn't work for you, sorry to be a bit stupid, but what is MMF. Also, as you say this did not work for you and you are due to start IVIG, again sorry, but what is that? I know all drugs carry a risk, but as no doubt it was for you, actually having an infusion is a really big step. Once again, thank you so much for your reply, it really help a lot.

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Hi that’s ok for the questions. Firstly MMF is Mycophenolate which is an immunosuppressant drug it does the same as most of these other drugs to suppress your immune system. It’s usually one of the first drugs they give or Hydroxychloroquine.

What I should of said is the Rituximab worked in softening the skin and bringing my high CK numbers down. But it didn’t bring them down that far and the drug wore off after about 3 months. But the 3 months for me were like being my old self again. The reason the Rituximab hasn’t been successful is I also have Scleroderma Heart as the hospital likes to call it. Which simply put is the disease is in my heart and I have stage 4 Chronic heart failure. The Rituximab and all my other treatments haven’t worked at all on my heart which is getting worse. So my cardiologist at The RF is putting me on IVIG which is an infusion drug of 3 days. It is basically human immunoglobulin made from human plasma so they have taken all the antibodies out of other healthy people and they give it to you. As my cardiologist put it, it confuses your own antibodies and is supposed to make them less active cos they let the new antibodies do the work. As the health professionals keep telling me they don’t know why it works but it works. This is the dilemma we will all face with our treatments that what will work for one may not work for another. This disease is such a mixture of different blends of other diseases for each of us. Like Lucy Jean says you really need to talk to your dr and then make an informed decision if the drug is what you need. I know for myself I would of stayed on the Rituximab as once I’m on IVIG I’ve been told drug wise for now that’s it. I will need to wait for a drug in trial or go on a trial drug. Plus then up my dosage of MMF which by itself doesn’t work on me. But I will try anything at this point cos I’m looking for that one drug that stabilises everything. But Goodluck and I hope you find the drug that your body needs.🤗

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Hi there, I had Rituximab after nothing else was really working for me. I don't think you need even consider that you will get the brain disease, it is such a long shot, but there are many other issues that you do need to consider. You usually start with two day long infusions, which are a fortnight apart. They give you a shot of steroid and paracetamol when you start the infusion to try and stop your body reacting to the drug. As Cole57 says you need close monitoring because you could have an allergic reaction to the drug, and your blood pressure can be affected. You are likely to feel fluey and achy (probably symptoms you get anyway) and generally grotty for a while after the infusion, and in my case I felt pretty rough for several months afterwards. Your immune system is going to be severely compromised so you need to be really careful about who you are around, and you may find you are poorly a lot from colds etc. I ended up with shingles that took about six months to shift. I think it might have had a small impact and improved the inflammation in my joints, but otherwise it did nothing beneficial for me. In fact if anything I think I ended up worse off afterwards. if I could turn back time I would say no to it....we are always wise after an event. But, at the time I was poorly and desperate, and this was what I was being advised to do. Sometimes you have no other options and you have to go for what the medics are advising. I did it because I felt my back was against the wall and I was more scared of what would happen if I didn't have it.

It seems to be more effective for patients with Lupus than Scleroderma.

It is really hard for us to advise you because everyone is so individual. I would make sure that they give you some details of what they are expecting this drug to do and how much benefit they expect, and on what symptoms.

Hope that helps. Sorry it wasn't a more positive reply!

All my best

Lucy xxxx

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Hi Lucyjean - thank you so much for taking the time to reply, which is so appreciated. I'm a bit at a loss to know what to do for best, but always great to have an opinion from someone who's already been down that road. I understand being poorly and desperate. You make a really good point when you mentioned that I should ask what the doctors are expecting the drug to do for me, and what benefit I could expect. I hadn't even thought of those questions, so that little mention will help in making my decision. Trust me your reply was positive, in that it gave me an insight into what may potentially happen. Thank you again for you reply.

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I was interested to read your post. I am on ibuprofen and Hydroxychloroquine but haven't had a day without pain. It's bearable but exhausting all the same. Consultant says the only other option is steroid injection into joint which he said was really the only other option but not something he was keen to do. Have just joined this group and interesting to see others experiences.

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Hi Mirv - thanks for the post. Besides the Hydro - I am also on tramadol and amitriptyline, and sometimes I swap the tramadol for codeine sulphate, depending on the day I'm having. Perhaps you could ask your consultant to increase your pain tablets, so that at least you get a day without pain. I don't really get a day without pain, even taking these tablets, but it is more bearable, if you get what I mean. I don't know about the steroid injection as that's not something that would be suitable for me. Hope some of this helps.

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Thanks. Just so nice to connect with others on this subject as at times it seems so lonely as no one else really gets it.

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Hi, I appreciate that I'm no expert but I haven't heard of limited sys. Sclerosis. It's usually limited or systemic. I have Scleroderma in my knees down to my feet. I did have it very bad in my hands and could barely move them. I was given methotrexate and my hands are completely better and the skin is loosening in my legs although I still have plaque morphoea on my shins. I have been on methotrexate for 2 years and have have had no side effects. I have regular check ups on my lungs and heart with blood tests for liver and kidneys. Fortunately I have had no signs of progression. I do know someone who has had the treatment you mention and they have had much improvement with no side effects. Please be aware that what suits one person may effect another person differently. I wish you all the best. The condition we have is horrible and that is an understatement.

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Hi Roselda - sorry for the delay in replying but I haven't been well. Thank you for your message, it is most appreciated.

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Hi, I have systemic scleroderma with the Scl-70 antibody active. I was diagnosed in September 2013 and my lungs were affected by it. I also had Raynaud, skin tightening, problems swallowing, esophagus problems etc. I bet it all sounds familiar... My doctor here in Greece decided to give me Rituximab therapy (one cycle) in the summer of 2014. I repeated the therapy once a year for the next 4 years.

Side effects: the first week feeling really tired and a bit dizzy. Also the last two times I had a slight allergic reaction during the infusion, but was effectively addressed by the nurses and carried on without any problems.

Benefits: skin felt really softened in only two days. I could open my mouth really well, it changed the way my face looked! But the greatest thing is tahat my lung tests improved a bit and have been stable ever since. My doctor says that Rituximab helped decreasing the disease’s pace- at least for now. This year I visited Pr. Denton at royal free in London to have a second opinion. In his opinion Rituximab worked great for me. He is certain that I wouldn’ t be in such a good condition if it weren’t for this medicine. Of course as he said, you have to weight the benefit vs the possible side effects, so both he and my Greek doctor put me on mycophenolate now because they don’t want me to have more Rituximab at the time.

So my experience has certainly been positive. I hope that, if you decide to try it, it works as good it has worked for me.

Best wishes

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HI Boome - sorry for the delay in replying, but I've not been well. Anyway, your message is very encouraging, and at the moment, I am swaying more towards having the Rituximab, following the messages received from this community, for which I am deeply grateful to everybody who has posted

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Hey there. I hope you are better now. In all things there are pros and cons, this applies especially to medicines. I cannot say rituximab is a light medicine with no side effects, there is no innocent medicine used for autoimmune deceases. In my case it contributed in my well being a lot. I must tell you I was scared to death when I had my first try, I had read a lot about the medicine and side effects and it was the first time I had an infusion. I stayed awake at night thinking about it. Then I realized it was nothing really!! So stay as calm as you can and hope it works. I wish you the best of luck

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They use if nothing else works . As it's a strong drug that's dripped in once a month anti TF drug . Think it's expansive

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