Retuximab

[Jackie1947]

Starting to feel the benefit of this medication. I had my first and second dose last March. Joint pain has decreased quite dramatically so I can move around easily and it's also lifted my spirits. Just back from Lanzarote which was supposed to be for a week but turned into two because I contracted gastroenteritis! I had a great visiting Dr and as I flashed the Retuximab card was even more diligent. I recovered well and was finally glad to be home. So to anyone worried about the drug as I was I wanted you to know how we I was feeling. Long may it last.

[cathie]

I'm so pleased to hear this! Long may your feeling of well being last

[3LittleBirds2]

Brilliant news apart from the gastro sickness of course...I've been wondering how you're getting on. Hope the improvement lasts for you. 😊

[LesBev]

Super to hear the drug is working for you, well done. And, as I start my first infusion on the 2nd June I am glad to read something positive. I am scared and reading potential side effects makes me want to run for the hills! Any tips on how to prepare for that first day at the hospital without panic! I have had some bad side effects with other drugs and that's why I'm nervous. I love it that we can all be connected on this site. When you live alone it can feel very isolating.......

[Cathy777 in reply to LesBev]

Yes I am starting soon too. Yes it does help being with others in the same boat !

[Jackie1947]

Hi. That's why I wanted to share something positive about the drug. Tips let me see. I took plenty of munchies to graze on and water.Reading matter to while away the time or you could take your phkne/tablet us earphones. Most of all a positive attitude. The format I had was first of all a urine example followed by blood pressure and temperature before kick off. Your blood pressure is constantly taken throughout the procedure. Oh and a antihistamine pill. First to go was a bag of steroids then half an hour wait before the Retuximab. All in all it took around 7 hours for first then two weeks later 5.You will be monitored quite closely.Good luck and let us know how you are doing.

[oldtimer]

It's really good when someone posts a good story on here. Mostly we post because we have a problem or worry that we want to share, but it reminds us that sometimes things get better as well! Thanks.

[Cathy777]

Oh that is just what I needed to hear thank you! Not your gastro thing! I am about to start on this and am pinning a lot of hope on it.

[Jackie1947]

Good luck. It has taken two months to feel the benefit so go with it.

[LesBev]

Thank you so much for the tips, I will be better prepared now and you are right in saying a positive attitude really helps. I have decided to have an aim.....I used to be a distance hiker back in the day and now my dream is to walk 2 miles with my little dog. Strange how your mindset changes over the journey of this disease, I would be so happy to make 2 miles now. Good luck to everyone on here and fingers crossed (as far as they will) for all our new drugs to be "the one" Have a lovely weekend all.

[Jackie1947]

Good luck with your aim in life. Take it easy though and don't push yourself too much!

[rawillbebeaten]

That's great Jackie, apart from the unexpected illness. My blood tests are showing that Rituximab must be working for me - Inflammatory indicators are at an all time low and within normal range! I still have burning pains in my feet and now a right ankle with restricted movement and pain. Rheumatology are listening and trying to help, it's some kind of nerve thing (they think!), which my Consultant thinks is RA related but not a side effect of the Rituximab. This is good and means I may be able to have infusions in the future. Underneath the strange feet thing I am feeling well. Have been on Iron tablets and B12 injections since last year and have added in Co-Enzyme Q10 (nature's sparkplug) to the vitamins/supplements I take, which I think has also made a difference. I really hope things stay as they are for you or even improve. Wishing you all the very best. Michele