Rituxan infusion day 2

[Shresworld]

My experience with my Rituxan infusion is that i was very scared to get this infusion after reading all the side effects but now I'm in day two after nit sleeping for 35 hours and woke up in a lot of pain the yesterday was nice having no pain after all the steriods they give you before the infusion. I really hoping this in infusion puts me in remission!!

[Lolabridge]

Rituximab has finally got my Rheumatoid Arthritis under control and without methotrexate.

I've had no problems with any of the infusions and I've had 4 cycles now, my first was in May 2019. First I had Truxima (two infusions each time and the last was just a single infusion of Rituxan. That was seven months ago and so far, I'm doing well as I have little joint pain or swelling.

Prior to that I had to try the usual non-biologic DMARDS, which made me ill and then Benepali (Etanercept) which did not work sufficiently for me.

I have not suffered from side effects during or after either infusion. MY BP goes up a bit at the start of the infusion but I've worked out that's the effect of the methylprednisolone I am given immediately beforehand. The only downside is that it's a strongly immune suppressing drug so I've had to take great care to avoid getting any virus, especially coronavirus.

I'm now in a period of low disease activity and I hope it works just as well for you.

[Shresworld in reply to Lolabridge]

Thank you for the reply i was given Rituxan which is the name brand so happy with that. The virus is what has me so nervous about it I work part-time and have to be around people. Did you stay home or what did you do to protect yourself? How long did it take to kick in for you? Sorry about all the questions I'm just so wanting some relief as i hurt all the time and have mobility issues.

[Lolabridge in reply to Shresworld]

Yes Rituxan and Truxima are biosimilars of Rituximab but Rituxan is the one the NHS in UK now mostly provide I think.

As I'm retired I have mostly stayed at home to protect myself but it's harder for you as you are working. All you can do is keep your distance from others as much as is possible and ask them to be considerate toward you as you are vulnerable. Regular hand washing and sanitising surfaces in shared areas too if you can. I assume working from home is not an option for you. If you can wear a mask or a face shield then do. Avoiding all types of infection is important. Do make sure your GP knows you are on Rituxan and if you are unwell you may need speedy access to treatment (e.g. antibiotics).

My RA is seropositive and was very aggressive from the outset. Having to try the other (cheaper) drugs first which did not work for me meant I have developed secondary osteoarthritis and osteoporosis; I too have some mobility issues as a result. But the Rituximab has worked it's magic and I'm hopeful that the RA is receding now and it's great not to be in pain most of the time. I think some people have reported it starting to work from six weeks, although I think it was eight to ten weeks for me. It also has a cumulative effect with each cycle of infusions you have.

I hope it gets to work quickly for you and considerably improves your quality of life.

🤞

[Shresworld in reply to Lolabridge]

Thank you very much for the reply again i too am seroposotive My number was very high 525.5 and I'm so happy it worked for you the nurse that did my infusion really didn't tell me nothing. I ask her after the infusion and her answer was that she wouldn't want to go to Walmart for a couple of weeks so that's how good the rummy office is i go to so I wonder if I will have to worry about that forever so you have to do the infusions every 6 months I guess I'm hoping i won't have to wishful thinking!

[Flipper12345yellow in reply to Lolabridge]

Hi, how often do you have your rituxan ivs now? I've just had my first 2. I too am seropositive and struggling.

[Shresworld in reply to Flipper12345yellow]

I have mine every 6 months

[KittyJ]

Fingers crossed for you Shresworld 😊

[Shresworld in reply to KittyJ]

Thank you so much!

[madme1]

Hi from England Shresworld. The infusion is like anything else, your body learns to adapt. We are all different yes, but my god I'd rather have the affects of the infusion any day than the pain all over my body I was feeling before that. I was so scared before the first one and felt sick with nerves, but the nurses were brilliant with me. The last few infusions I've been having they aren't giving me steroids anymore, and I didn't have to take headache tablets before hand, I'm on NSAIDS, non-steroidal, anti-inflammatory, disease modifiers, so for me that's better in a way as I didn't feel as heavy afterwards. I've been on 2.5mg of Prednisolone for a few years now, I started off on 10mg and couldn't handle it. So you will get to a stage where things are more settled. The thing I found is that it teaches you to listen to your body more and only do what you can manage. Good luck.

[Shresworld in reply to madme1]

Thank you for the reply I'm so happy for you i hate the steriods they give you it kept me awake for almost 40 hours now I'm just really tired been sleeping alot the last 30 hours the infusion nurse i had didn't tell me nothing except that she wouldn't go to walmart so she has me thinking i need to lock down because of the viruses and infections did you lock down? If so for how long?

[madme1 in reply to Shresworld]

Last 18 months I stopped going to the shops. I now choose times when I feel places are going to be less crowded. I have a lot of meals planned as there are some special occasions coming up. I mask up and keep my distance as much as I can, I cherry pick the times I go out. I'm a member of a local choir, so I'm debating wether to attend Carol Concerts, even in places that are described as Covid safe. For me personally, I don't feel as if shops are coping as well as other venues but they can only do their best. If I don't feel safe, I don't go, so my husband shops for me. I never thought I'd say it but I actually miss food shopping.

[Shresworld in reply to madme1]

I don't have anyone to shop for me this probably wasn't the ideal time to have this infusion but I was at the end of my rope i have a mobility issue in and lots of pain not sure how I'm going to deal with this part well thank you for the reply and stay safe.

[madme1 in reply to Shresworld]

Yes it's the mobility with me too, can you not have deliveries.

[Shresworld in reply to madme1]

Probably but i also work part-time in the public.

[trenarren]

Hi Shresword, I've been having Rituximab infusions for the last 3 years now, my inflammation is now under control! I went through all the cheaper drugs for many years with no real response, Rituximab has sorted me completely. I have a rheumatology appointment next week and I am going to ask about comming off/reducing the methotrexate dose I'm on. We are all soo different but let's hope it works the same for you.

[Shresworld in reply to trenarren]

I'm so happy for you that's great news! U hope that happens to me I'm now really worried of catching viruses and such i really needed this but I'm only semi retired and work part-time so i need to be around people. Have you had a problem catching viruses or colds? Do you isolate?

[trenarren in reply to Shresworld]

I do take as many precautions as I can, I retired 6 months early last year so I don't have to mix a lot, so I just mask up and keep my hands sanitised as much as possible. Xmas will be the next challenge!! I've had no colds etc, in fact I've not felt so healthy for years!! I do hope it works for you the same.

[Shresworld in reply to trenarren]

Thank you so much! Do you have them every 6 months?

[trenarren in reply to Shresworld]

I think it would work out to average about 7/8 months. The Covid situation has held a regular Infusion visit impossible this last couple of years, so I've flared for too long before the next Infusion. But I had my last in May this year and hope to persuade them next week to book me in for next February. Probably won't work like that but....

[Shresworld in reply to trenarren]

I'm sorry you've had to wait I've read that some people don't have to take them that often and some not at all day 3 for me and I still hurt but i know it takes time thats hard i can hardly wait!

[sunnyweek]

Hello, I'm due my retuximab infusion next week. it will be my 9th. So far, I've never caught any cold, cough, virus, after them. It will be sensible for you to wear a mask at work, and take precautions, regular hand-washing for example and if possible keep a fair distance. I know covid is an extra concern, but I've just been sensible, ie, hands, face, space, as much as possible. I hope it works well for you.

[Shresworld in reply to sunnyweek]

Wow that makes me feel better! So no pain for you? I can't wait to feel that! Thank you for your reply 😊

[sunnyweek in reply to Shresworld]

Has been very helpful as I have a lot of joint damage over 30 years before biologics were invented! I'm glad I have a date, as was wondering if they were behind because of Covid. Just take care and all the best x

[Shresworld in reply to sunnyweek]

You haven't had a rituxan infusion yet? Your waiting?

[sunnyweek in reply to Shresworld]

I'm waiting for my next one which is next week, it will be my 9th.

[Shresworld in reply to sunnyweek]

Awesome i get my booster one or the second one 2 weeks after my first what ever you call that one 🤔 maybe a loading dose on tje 13th.

[Angels-delight]

Sorry to say but it didn't work for me whereas it did for others. Best to try it and hopefully it will work for you. Good luck.

[Shresworld in reply to Angels-delight]

I'm so sorry your the first one so far that said it didn't work. I guess everybody is different I do hope you find the right medicine!

[Angels-delight]

I have a new Rheumy and he did a load of tests and he came back to me saying Retuxinab didn't work for me 200%.

[Shresworld in reply to Angels-delight]

I'm sorry are you taking anything now?

[Angels-delight]

I am Cimzia injections every 2 weeks. I came to a hospital Tuesday and I am back again waiting for a bed as my INR Blood test was 8 and I had another test whilst I was home the doctor called this morning and it was still high at 7.5 so I was told to call 911 and get an ambulance right away. So here I am.

[Shresworld in reply to Angels-delight]

Omg I'm so sorry what is a INR on a blood test I'm saying a prayer for you 🙏

[Angels-delight in reply to Angels-delight]

Thank you, INR is a blood test that you have when you are on blood thinners. I take warfarin it measures your blood so that your Dr knows how much medication to give you and how soon you need to be tested again.

[Shresworld in reply to Angels-delight]

Oh I'm not on blood thinners probably why i never heard of it. So are you ok and out of the hospital now?

[Angels-delight in reply to Shresworld]

No I'm still in the Dr said this morning I may go home tomorrow and other Dr's say they don't think so.

[Shresworld in reply to Angels-delight]

You mean the hospital? Maybe stay a little longer it cant hurt prayers for a speedy recovery 🙏

[Angels-delight in reply to Shresworld]

Thank you, I can't wait to get home