rituximab nerves!

[maeows]

so, I have lupus and i'm due to have my first infusion of rituximab in the next month and I am extremely nervous- I'm not keen on this at all and not entirely sure it is necessary, i felt i was doing ok on the mycopehnolate but my dose has been upped and it gives me a terrible stomach- but i will obviously defer to the experience and knowledge of my consultant/specialist nurse and of course appreciate that i am lucky to have access to this treatment.

my question is, how bad is the immunosuppression afterwards, in others experience? how bad do you feel after taking it?

i will still be on mycophenolate x3 a day afterwards- how restricted will i have to be in my life, how restricted are others?

i am extremely nervous about infections but also really want to live my life- I'm 30- my entire adult life has been dominated by managing my lupus and going through cycles of wellness, unwellness and horrid medications.

[Betty909090]

I was offered Rituximab circa 2016 for newly diagnosed lupus nephritis but decided against this experimental drug at the time, opting instead for standard MMF treatment, 3G to 2G per day. Now 2G/day.

Didn’t want to be a guinea pig! Fortnightly iv, hospital infusions just didn’t appeal despite huge pressure.

My eGFR is always around >90 so I’m happy and so, I believe are my consultant NHS nephrologist and GP.👆👍 Glad I personally made the right decision.

[maeows in reply to Betty909090]

yes it is quite nerve-racking taking some of the new generation of meds- I can defininitely see why you would decide not to, particularly so early in the time it's been prescribed for autoimmune diseases. glad it worked out for you and i hope it continues to!

i'm probably going to take it- mostly because i desperately need to be on less steroids, but i can't seem to get them down with the amount of mycophenolate i can tolerate.

[nada28]

Hello!

I have just had my first cycle of rituximab recently. I completely understand your stress I had the exact same too. I am 21 and in uni so your fear is my fear too!

I tolerated the first dose well, they infuse it very slowly so took all day so I was tired and weak for the next few days. The second dose they infuse a lot quicker but i didnt tolerate it as fast so I had palpitations for a few days after but they settled and feel okay now. I think these are all normal side effects but I was told most people tolerate it well and that it is meant to be really effective so i am banking on it working lol

As for infection, I already have low white cells and thankfully I have been okay so far - and I am a med student so I am in the hospitals and yet havent caught anything luckily. I refuse to let this control my life so I do what I usually do but just be precautious ie wearing masks in busy areas, super hygienic that kind of thing. I wrote a post asking similar questions and got lots of positive responses so I am being positive about it. Good luck you will be fine xx

[maeows in reply to nada28]

wow medical school and lupus- g very impressive, must be super tricky! i have been navigating this nearly a decade now and it maybe gets not easier but more predictable. it's heartening to hear that you've had an ok time with it so far!

[MonicaT in reply to nada28]

Proud of you 😘

[Turquoise-1]

Hi maeows

My 62 year old husband has Rituximab IV infusions for his Rheumatoid Arthritis. He suffers no ill effects at all, the only thing he feels is much better!

Rituximab for him is extremely effective and is far better than the previous Biologic he had to inject himself with (Adalimumab). He also takes DMARDS and has regular blood monitoring by his Rheumatology Team, so anything alarmingly out of range is quickly identified.

He works part time in a busy customer-facing role, was on an early shift (6.30am) start after his last infusion, regularly goes to a gym, swims & uses the spa facilities which are all used by many other people.

Carrying on as normal is his philosophy. He takes all usual precautions, doesn’t pick up every bug going and is quite well, plus no area of his life is in any way restricted.

I have SLE, had severe adverse reactions to usual Lupus meds, including Anaphylaxis so I know what you mean by, “horrid medications.” Biologics were discussed at my last consultation, I’d gladly have Rituximab if it was as effective for me as it is for my husband. If your Rheumatology Team is any where near as good as ours, hopefully you’ll be is safe, experienced hands. Despite your reservations, the fact that it could help you to be extremely well might be worth giving it a try.

Good luck 🙂

[PositiveT]

Hi Maeows.I have had three Rituxumab infusions. All 6 months apart and I am due a fourth in June.

I have Lupus and Myositis along with RA, Raynaurds and Essential Thrombocythaemia. I had to have cyclophosphamide infusions ending August 2021 and the Rituxumab infusion followed. I take Azathriopine.

I am 52 and so far have coped very well with the infusions. It takes all day so take your phone for audio books/music, a book, snacks if you need them and water.

I always drink lots of water whilst I have them. Yes it does mean getting up to the toilet with a cannula but I find it works for me and it's good to move around a bit.

Personally, I have only felt tired afterwards with a slight headache once. After three days I feel better and after three weeks I feel ALOT better!

The nurses look after you and offer tea and a snack box (sandwich etc). They do your obs and keep a close eye on you.

I am now able to swim a little once a week in a pool and walk every day. I have also started riding a pony again in walk and trot - something I never thought I'd do again.😍🐎 For me this drug works extremely well and has given me a quality of life back. I still flare (who doesn't with autoimmune diseases?) and have aches and pains, noticeably worse towards the end of six months when I need another infusion - like now!

My life has definitely improved with this drug.

I hope this has given you a boost and wish you all the best with your treatment.🤞🌻

P.S. If you feel you can tell the nurses you are nervous as I'm sure they'll give you a little extra tlc. X

[mainlyconfused]

Hi there. I’ve been having Rituximab infusions for 2 years now. It’s all been fine. A little tired afterwards and red faced due to the steroids I have to counter any side effects, but otherwise completely ok. I have lupus with nervous system involvement. It’s fear of the unknown I think, Once you’ve had one you’ll feel a little easier I hope.

[Yellow92]

Hi, I've also been having Rituximab infusions for about 3 years now (every 6 months). I have continued to take mycophenolate and now trying to reduce the those and I have managed to keep away from steroids for a bit now.

I'm also 30 and was really worried about the immunosuppression and getting I'll. Especially as I started to take immunosuppression during the pandemic. I do still take some pre cautions e.g wear a face mask as I am in a client facing role and in busy places like the shops and my hand sanitizer is alway in my bag Initially I was a bit self conscious but I find people are understanding about facemasks nowadays.

Rituximab has helped manage my lupus which my Rheumatologist described as severe and aggressive. I had kidneys, heart and lungs being effected causing a lot of pain at one point.

I am in a lot less pain and able to do a lot more then what life has been prior to Rituximab. I do have the occasional flare but much more manageable.

I am still uncomfortable about the treatment as I don't do well with needles but the nurses are very good. I do also feel tired a few days after, so I try and book the infusion for a Fri so I have the weekend to recover.

If you feel uncomfortable/ think you may be having side effect/ faint, the nurses are always close by to help. During my first infusion I was very worried and the nurses were very kind to me. I felt faint... They slowed the infusion and my doctor came to see me. I think it may have just been my nerves though as all other infusions went fine.

Good luck with your treatment and hope it works for you.