Advice on Rituximab

[BookishVibes]

Hi everyone,

I'm struggling a bit with making a decision and I'd really appreciate some thoughts on this.

I saw the registrar a few weeks ago and my rash (suspected to be the SCLE rash) has been flaring and a few other symptoms too been going on for about 6 months. The dr asked me what has helped in the past and I said Rituximab was the only thing that really helped. She asked me how I felt about going back on it and I said whatever would improve my quality of life.

However over the last weekend the rash began to clear of its own accord. Most of my other symptoms are still there but I don't feel as ill as I did the last time I had the rituximab. I contacted my consultant's secretary to ask the registrar her opinion on whether I should still go ahead with the infusion as my other symptoms may also start improving by themselves and I do feel nervous about the consequences of having the rituximab. I haven't heard back yet (that was about a week ago).

I'm also a bit worried as the last time I had the Covid jab was last May. I hadn't been planning on getting another one but I feel like I should get one if I'm going to have the Rituximab. But if I don't end up having the Rituximab I won't get the next jab for now. I need to decide soon as I know I need a good few weeks between getting the jab and having the infusion and my infusion is currently scheduled for the end of March so not that far away.

Sorry for the long post but I'm just so stuck, I haven't yet heard back from the registrar and don't know what to do or who to talk to.

Thanks,

BookishVibes

[Sarah74]

chase the Registrar!!!!!

[hildebeast]

I am in a sort of similar predicament. They want me to go back on rituximab but then you lose any efficacy of the vaccines, maybe a few antibiotics survive but basically it means going back to shielding, just as I feel life is opening up again and I am getting some quality of life again. And it is rsky if you catch covid. So I would do your research and yes chase up your doctor. Decisions like this are difficult. All the best x

[BookishVibes in reply to hildebeast]

Thank you, hildebeast. I guess my biggest concern is about having the Rituximab unnecessarily. It's helpful to hear others thoughts and experiences, so I appreciate you taking the time to share. All the best to you too x

[Turquoise-1]

Hello BookishVibes,

My 62 year old husband will shortly be having Rituximab infusions again as the benefit from having his 1st lot in May 2022 is beginning to diminish. He has Rheumatoid Arthritis & was told by Rheumatology Consultant & Nurse Specialist to get in touch as soon as he felt it had started to wain. He also takes Sulfasalazine, Meloxicam, Tramadol & Paracetamol.

Prior to Rituximab he self-injected another Biologic Therapy, Adalimumab, (which like Rituximab also ‘switched off’ his TNF), but Rituximab gave him a new lease of life.

He still works, (albeit part-time now) in a customer service role, worked all through the pandemic, has never ‘shielded’ & neither he nor I have ever had Covid-19. He keeps his distance from people as much as possible, wears a mask for hospital appointments of which he has many & chooses to lead a normal life as possible. We attend a gym, swim, use the hydrotherapy pool, sauna & steam room too, so if he were to shield he would miss out on all of that. Rheumatology Consultant advised keeping up with the exercise, (we walk & cycle also) & that the Hydrotherapy Pool is incredibly beneficial for his & (mine - I have SLE Lupus + lots of orthopaedic problems), joints, circulation & general wellbeing.

Despite you having better days, (my Husband & myself both do), the Rituximab should hopefully boost you on your not so good days. We’ve both had 5 Covid jabs but I guess you’d need to discuss with your Rheumatology Team.

The Rheumatology Hospital we go to has an Advice Line - contact via email or phone, a Rheumatology Nurse always gets back to us & happily gives support & advice, is this an option for yourself?

I’ve got an imminent Rheumatology appointment to discuss me having Rituximab as unfortunately the 3 specific Lupus drugs I’ve tried thus for have been unsuccessful & caused me to have adverse reactions. I’ve seen the enormous improvement in my husband after he’s had Rituximab & rather fancy that for myslef! Lol …..

You could always put it on hold for a while & see how you get on, then have it at a later date if you’re not too sure at the moment.

Good luck anyway & best wishes to you 🙂

[BookishVibes in reply to Turquoise-1]

Thank you so much for your reply, Turquoise-1, it's been super helpful. I'm pleased your husband has found the Rituximab helpful and I hope it helps you too!

We used to have a nurses helpline years ago but they stopped it for a period of time so I will find out if they've re-started it. I've also chased the registrar via the secretary but I know there's a lot going on with the NHS and I always feel guilty to chase medics, I know they are working flat out.

I have the appointment letter for the Rituximab through for end of March so perhaps the best solution is to reschedule for end of April and wait and see how things go.

Your response has been so helpful, thank you so much.

All the best to you and your husband xx

[Turquoise-1 in reply to BookishVibes]

Thanks for your kind words, if I ever do get Rituximab & it does me some good, I will be broadcasting it loudly on here to let anyone who is suffering know about it! 📢

As a retired Paramedic I would encourage you keep up the chase, your issues are as valid as anyone else’s & it is more than OK to voice them. If ‘they’ don’t know what you know, they can’t help you in the best way possible.

Take care xx

[BookishVibes]

I am keeping everything crossed that you get the Rituximab and that it really helps you. 🤞🏽🤞🏽

I finally decided today (after encouragement from my dad), to ask to have my questions sent to the consultant whose care I'm under in case he could advise instead. About 10 minutes later I got a call from the registrar and she went through all my questions with me and was very helpful. I feel terrible though, like I was reporting her to her manager kind of thing but I just didn't know how else to get an answer. And also I'm so aware of all the stuff going on about junior doctor pay and the strikes.

Thanks again for everything

Take care xx