Rituximab

Saxophone555

Hi everyone, I'm new on here not computer or phone literate so please excuse. 5years ago I was taking Warfarin for a few Dvts. I'd been on them for approx 7 years when a new doctor changed my tablets for another blood thinner called Apixiban.Within a fortnight I was taken to hospital and given massive doses of steroids to calm my inflammation down.I was kept in for a week and my body went into shock. I developed Rheumatoid arthritis. I was put on Methotrexate,injecting once a week for 5 years. The consultant decided after 5 years it was damaging my liver this was last year. They decided to now put me on biologics, a drug called Ritaximab,these are given as an infusion. The first infusion sent me into shock after the first 20 mins, fortnight later they managed to get the second one in ok. The second one was on Nov. 12 but nothing happening except that my arthritis is now crippling me it has escalated to a point my wife has to wash and dress me. I have a video call with the consultant next week but wish she could see how iv deteriorated in the last 8-9 weeks only . I know we shouldn't believe all we hear and say iv been on utube to get some information about Ritaximab and one doctor said it could take up to 3-4 months to work.? Can anyone help.

Ellen

Hi @Saxophone555 welcome to the online community. Please don't worry about being computer savvy everyone here is very understanding. As you can imagine some of us have trouble with our hands and mis-type, some are using voice activated software etc. I have moved your post here so it's obvious to anyone who can help/has experience with your medication.

I can see from your post that you are having a really, really tough time at the moment with your Rheumatoid Arthritis, which sounds to be very active, and have recently started on Rituximab. You are right it can take some time to work and I expect your consultant will want to persevere for a while longer.

You are wise to avoid looking on social media for advice it can be very hit and miss.

These are some posts/threads from people using the forum:

https://community.versusarthritis.org/search?domain=all_content&query=rituximab&scope=site&source=community

I genuinely believe your consultant will understand just how bad you are feeling when you have your videocall next week if you explain as well as you have in your post here. I hope your wife can be present during your consultation to express her own opinion too.

Hopefully someone here has experience of your medication and will share their own experience I am pretty sure @TiredWarrior takes it so may be able to help.

My very best wishes

Ellen.

frogmorton

Hello @Saxophone555

I am so so sorry to hear what a rough time you are having. It's so unfair when this condition takes a long time to get under control. I have been lucky so far and not needed biologics, but really wanted to offer my support to you and your wife.

Interesting to read that it seemed to be triggered by a bout of ill-health for you. We have had people here who started with it after infections like covid, some even vaccinations, some pregnancy. I often wonder whether some of us were predisposed to getting it and it just takes one thing to trigger it off for us.

Your post really says it as it is and I hope you and your wife will together prepare something for your video consultation next week. I am very glad it's so soon and hope you will let us know how you get on.

Sending you some ((()))

Toni x

Saxophone555

Hello , Iv had my video phone call last week which didn't go well. First I didn't speak to the consultant but a rheumatoid nurse. He said that it might take 6 months before the infusion will start working? He said that I would have another infusion either may or June . He went on to say that my pain wouldn't be all rheumatoid and to make an appointment with my G.P. which is another 2 weeks away. My wife has to wash and dress me for the last 11 weeks this has escalated only since the last or only infusion as the first failed. I started taking co codimol to go to bed try get some sleep but find I'm wide awake by 3.00 . Has anyone had any experience with this Rituxamab. Before I had the infusion I never had a problem with my arms or shoulders this has only come on since the infusion? The pain on a scale 9 sometimes a 10 with tears. I have lymphoma which me and my wife believe the 5 years on Methotrexate caused. Would love to hear from anyone with similar experience.

Saxophone555

Catkins1971

Hi. Sorry to hear you’re having a bad time with all this. I’ve had RA for about 20 years and was on methotrexate for years which was brilliant at the time but gave me a pancreatic pseudocyst amongst further complications so I ended up on rituximab infusions. It worked brilliantly for me for 2 1/2 years but I got the allergic reactions when having the infusions so they wouldn’t let me have it this time. I’m now 6 weeks into Abatacept which is another biologic that you inject yourself weekly. Not noticed much difference as yet but am hoping it will be as good as rituximab. I hope it works for you eventually. It certainly didn’t take 6 months to work - maybe about 6 weeks from memory. You could maybe also ask for a reducing amount of steroids for a month to help in the meantime?

Saxophone555

Hi Catkins, thanks for getting back to me. I was on warfarin for 7-8 years and a new doctor in my surgery changed it to another blood thinner called Apixaban. Within a fortnight I was taken to hospital and stayed for over a week given large doses of steroids. My body went into shock And this is how I developed RA. So far I'm 1 of only two people who has had this. They have issued a yellow card and iv had a paper written about my condition which was read out at the Rheumatology conference in Manchester. I was put on Methotrexate injecting once a week for 5 years. A year last January they took me of it I think they knew then that I had lymphoma non Hodgkin's in my bones. Came September they decided to give me the Retuxamab infusions.The first one I went in to shock after just 20 mins. Fortnight later the second one was successful that was Nov.12 . After that my health deteriorated very rapidly,my wife has to dress and wash me in the morning for the last14 weeks. My GP. I saw last week put me on a short month course of steroids and done some emergency blood tests. The G.P. was annoyed that the Rheumatologist had told me to see him as my G.P. said they should have done blood tests after the infusions. I'm now awaiting my results this Tuesday 🤞I'm new on here and still not sure how to use this but would love to hear back from you or anyone else.👍