Rituximab

[Peterborough67]

Loads of things have failed, so having my first Rituximab infusion on Thursday, how should I expect to feel in the days following? I'm a big coward!

Thanks in advance to the good folks out there.

[weathervane]

I have had 3 courses of rituximab and has been worth it for me as i have more energy, less pain and lymph nodes have reduced . It took me a week to get over first one as had bad gastritis and i felt exhausted and nauseous. I increased the omeprazole and they slowed down the infusion for the next 2 and i felt alot better . It can take 6-8 weeks to kick in properly. Go with a good book and a warm cardigan incase you feel chilly. Be careful with hand washing etc and avoid anyone that is ill where possible. I really hope the treatment works well for you , keep us updated . Best wishes xx 🌸🌸🌸🌸🌸🌸

[Jillyanne in reply to weathervane]

I had my the 1st of my second lot on Monday, it does make you tired and yesterday felt very sick and unwell but today feel fine .

My first lot it took a good couple of months to kick in but it does work, I can function on a day to day basis .

Take a good book, have a sleep and keep warm , the nurses where I go are brilliant and if you feel unwell, make sure to tell the nurses and they will stop the infusion for 10 / 20 minutes and then start it again in a slower rate.

Good luck 🍀🍀🍀

[pino99]

Hi, I had my first rituximab infusion two weeks ago and I am having the second today. I felt absolutely nothing with the first, during or after. Was actually better for a couple of days as they give you steroids first for half an hour to prevent an allergic reaction.

[AgedCrone in reply to pino99]

Forgot to say....most units now have WiFi so you can catch up with your email or shop the day away on QVC or Amazon! Bliss!

[AgedCrone]

Expect to feel exactly the same.....but gradually feel a lot better!

I'm just approaching my fourth set of infusions & apart from feeling a bit fluey after the second infusion of the first set I feel better than I have for the last 18 years.

This time I do have a few more aches & Pains as my next infusion approaches. Rheumy says that is normal.....but they are nothing I can't cope with.

As weathervane & Jillyanne say, take something to read & to keep warm. First time round I took bottles of water & fruit, but the unit provide hot & cold drinks, and a sandwich lunch,so now I just take peppermint & my Kindle!

The unit I attend has about 20 chairs & I guess because of all the drips & other equipment it is kept cool...so I trot along with my trusty cuddly blanket! Don't panic if you think it will go on for ever. My first infusion took nine hours, but thereafter it is usually around 6 hours. I'd stay there 24 hrs if I knew I would feel as good as I do now.

I drive myself there & back & I would not be able to do that if I was feeling at all unwell. So approach your first infusion as a day you can read & sleep!

Good Luck!

AC

[englishrose67]

Hi Peterborough67.When I had Rituximab I was told not to drive home because you have piriton and makes you really tired.Wouldnt be insured aswell as unsafe.I am in Southampton, England and the infusion took all day.I used to sleep most of the time(on & off) while I was having infusion and I also got a bit chilly.I came home and went to bed as felt totally wiped out and I felt like that for a few days.It made me feel so much better once it started working after about a month or so.I started reacting to it though so had to stop having them.I became neutropenic.I now have bilimimab instead.although I'm neutropenic again at mo so infusion had to be cancelled last week. It must be just me ! I wish you all the luck with rituximab.its a great drug if it works for you.let us all know how you get on

Take care

X

[TedC]

I went through retuximab and bendemustine treatment about 18 months ago. Everyone is different but for me it was much easier than I was led to believe. After the initial treatment I felt much better. Better than I had in years. Swollen lymph nodes in my neck the size of a baseball reduced to normal within two weeks. It was amazing. After about the third treatment fatigue started to become an issue, as is normal for most from what I understand.

For most, I am told, the fatigue improves to about 90% of normal six months after treatment and 100% after a year. For me that has continued to be an issue even 18 months out. No one has had an explanation for why, and I am told that is extremely unusual so I wouldn't expect you would have the same issue.

I hate needles, and was extremely worried about the treatments, but am glad I had them. The only thing I would do different would be to have a port put in which I did not have done.

Good luck! I think you will feel much better almost immediately.

[Acn311 in reply to TedC]

Perhaps it make you celiac. Try a gluten free diet.

[sunnyweek]

Hello Peterborough 67

I'm Sunnyweek and have had four cycles of Retuximab.

Do not be worried. The Unit will look after you well. I have mine in Nottingham.

Once the canula is fitted you just need to fill in the time. They should check your blood pressure every half hour as with everyone else in the Unit so it can be quite busy and you may enjoy the odd interaction with the people near to you. If the Unit is air conditioned they will give you a blanket if you feel cool.

They do a flush first, about 20 minutes, then some prednisolone, (about 20 minutes) and maybe two paracetamol if you want them, all to help with any possible side effects. Then they put a bit of antihistamine in. Some people start to feel a bit sleepy at this point.

You will probably be in a recliner chair, so put your feet up and take a book or something to entertain yourself. The nurses are usually great. They will give you drinks and biscuits. In Nottingham we take our own lunch.

Regarding the days following, its more than likely you will feel no side effects. They make sure all your observations are normal anyway before you go home. Just rest and take it easy the next day as you may feel tired as its quite a long day 8.30 - 3.30. I hope it works well for you, mine normally takes up to a month. When you go for the second round of the cycle you will just be glad to get something that hopefully helps you! xxx

[Gillian1163]

I've been on it for a few days now. It has been successful in lowering my ESR/CRP. My only side effect is a bad headache on infusion day caused by the steroids ( according to my specialist nurse)

[luckyboy-2]

Hi Peterborough67! I was given Rituximab as part of a 6-cycle course of FCR. This was back in 2010 and as I recall, the first round of R was infused very slowly, preceded by a steroid shot. (I don't remember whether the first infusion was spread over two days or not). The F and C then followed on days 2,3 and 4. I was never aware of any reaction to the Rituximab - I did feel rough after cycle 5 of the course and even worse after cycle 6 but the effect only lasted a day or so, and apart from that there were no other problems.

I hope it is the same for you. Good luck!

Luckyboy-2

[annie330]

Hi there I've had Rituximab a few times now my next lot will be the 9th cycle. What I find is that my headaches are worse for a few weeks after. During the infusion I get tired and sometimes have fallen asleep an hour or so. Overall I don't find it bad, make sure you take something to keep you occupied as you will be there a while and take some lunch. I think be prepared to feel tired and when you get home rest up.

Hope everything goes well.

[KaysDad]

I went on a trial for Rituximab in October 2006 and had three infusions at approximately 6 monthly intervals (required as part of the trial). This put me into remission which lasted for 7 years. I have had 2 more treatments, June 2015 and December 2016 and am now feeling absolutely fine. All I have now is sore feet and fatigue. No pain killers or anti inflammatories.

My only reaction to the infusion was flushing to the chest, neck and face on the evening of the infusion, once home. This was gone by the following evening. I, too, was told not to drive myself home. Hope this helps.

[SMS2006]

Rituximab really worked for me. Long days sitting in the hospital but worth it. I felt light-headed and tired on the day, and tired the following day, but all good. Nothing to worry about. Good luck!

[lisalockit]

Hi Peterborough I've had 4 cycles of Rituximab now and getting ready for a 5th. Please don't worry I'm sure you will be fine. I go to QMC in Nottingham nurses are good and do obs regularly, you'll feel a bit sleepy after the anti histermine part so recline and have a snooze then. Take something to read or do as a long day, but I treat it as a nice rest day from work!!!!! Evening and day after feel exhausted but fine after and I usually start to benefit again after 4 weeks so well worth it. Hope this helps and good luck 👍

[Grembold]

I have had two chemo courses (2010 & 1016) which included Rituximab and on both occasions shortly after the first administration started I felt really nauseous. After a short rest and anti-nausea pills the Rituximab dose was continued and I felt fine. Subsequent administrations were preceded with anti-nausea pills and all went well.

[yogesh_c]

As everyone said there no need to worry about rituximab, i would say the same. My wife had 4 courses of rituximab in December 2014 and did not see any problem and she was quite comfortable.

So go for it without any doubt or any negative thought, every thing will be fine.

Best of luck... wish it work for you..!!

Cheers.

[Peterborough67]

Thank you all who responded to me. It helped make me a little less nervous for infusion day which went without a hitch as you had predicted.

What an unexpected bonus on first day. On a terrific high following 100mg steroid infusion pre main infusion. My very best day this year!!! Pain/illness free and able to live as before I had this awful dignosis.

Days 2 and 3 spent mostly in bed as energy had hidden away. Rest of week feeling a bit fluey and exhausted.

Roll on Thursday for infusion no.2, staying positive that this medication will be the one for me.

Sorry I took so long for this update, but you who have been there will understand.

[evochka]

My mom takes rituximab for 3-4 years for now and the result is obviously positive. She feels better and her blood test looks better too. As many of us, we had a lot of doubts and uncertainty, but now, we see it was totally worth to do.