Newbie!

[sarah_lupus]

Hi, kept meaning to join after seeing on Lupus UK. Lupus with a side helping of antiphospholipid syndrome and spectacular myosotis. In the process of upgrading from mycophenolate to rituximab, any suggestions, hints greatly appreciated. Looks like an amazing supportive group ❤️

[Bebe76]

Welcome, Sarah! I have not taken rituximab but I've been on MMF for8 years. It gave me my life back. I hope it works for you just as well! It will take several months to feel the full effects and you will need regular bloodwork.

[sarah_lupus in reply to Bebe76]

Brilliant! Thanks for the reply, hoping it will give me mine back too, as realising how much I’ve lost. Stupid lupus

[Bakbre]

Welcome Sarah

I am on Rituximab and have been for nearly 3 years. I have Undifferentiated Connective Tissue Disease (which is close relative of Lupus), Rheumatoid Arthritis, Bronchiatasis & Small Fibre Neuropathy and I have been treated with so many medications that did not work.

Being in considerable pain, my new consultant decided to try Rituximab and boy, am I glad that she did. You will get 2 doses on a drip, 1 that lasts for 6 hours and a fortnight later, 1 that lasts for 4.5 hours. That’s it then for 6 months. They recommend that you have it every 6 months - but - the longer you can go in between treatments with it, the better it is. Since then I have had 3 more treatments of the drug and I didn’t need the last one I had for 9 months.

Going back to my first time, within a day of being given the first dose I felt better than I had for months & months, years even. Apart from being tired for the fist 2 days afterwards I can honestly say that it seemed like a miracle cure, I suddenly had my life back!

It obviously has it’s side affects, but it works and I told myself that all the medications we are given have side affects, this is no worse than any of them. I would definitely recommend it & urge you to try it, what have you got to lose, except pain maybe!

Good luck and let us know how you go on.

[sarah_lupus in reply to Bakbre]

Thank you so much Bakbre, so much helpful helpful information. So glad it worked for you and so fast, fingers crossed it does. It for me too! 🤞🏽🤞🏽If it works and I can move around without looking like a 90 year old, I’ll take a couple of side effects.

Thanks you ❤️❤️

[Pickzie]

Hi Sarah. Like Bakbre, I’ve had a really good response to rituximab. I have lupus, antiphospholipid syndrome and sjorgrens. I was worried about starting the treatment about 6 years ago but am so glad I did. A few weeks after the first infusions I felt better than I had in years. I tend to go 6-9 months between infusions now. Good luck x

[sarah_lupus in reply to Pickzie]

Thank you Pickzie, again this is super reassuring. I see lupus brought many similar fun friends to additionally play with us. Thank you ❤️❤️

[Maverick77]

Hi Sarah. I have just had my seventh rituximab infusion. I started to feel the benefit after the third one. Now I look forward to my infusions. I can go on holiday again and feel as though I’m in control of my life again too. I haven’t had any bad side effects. It really works for me.

[sarah_lupus in reply to Maverick77]

Thanks Maverick 77, this is amazing (for you) and reassuring to me. As was expecting, like mycophenolate to have a poor mans version of my life (the past two years). What you (and everyone else) describe sounds amazing. Thank you ❤️