Ritux 2

Hi all, just completed the Rituximab infusions. Now waiting to see if they will work for me. The hospital did tell me that some people notice an improvement within about 4 weeks so keeping fingers crossed. It was an interesting experience. The first time spent from 9 am. until 4 p.m. at the hospital. Had Piriton infused first (to avoid any allergic reactions), followed by steroids, followed by the Rituximab for 4 hours. Hospital provided sandwiches for lunch and plenty of water, tea and coffee. 2nd time nearly as long from 9 until 3 as a lot of faffing about with my veins which were not co-operating at all. The first canula got a little blood clot in it so had to be taken out, the second attempt hit a valve in the vein so no go there and Plan C saw the canula going into the inside of my elbow where it worked. Thank God we didn't have to go to Plan D - don't know what we would have done!

I also had to have another blood test taken as my Potassium levels were up but the Doctor thought that may have been due to the fact the bloods had to travel 50 miles to the path lab (they closed the one at our local hospital) and may have stood around until checking. As I didn't hear any more I assumed everything was ok. My blood pressure was 130/70 which they were very pleased with. It was sky high the first time but nerves etc probably put it up Also I only have to go within 50 yards of a hospital and it rockets.

Piriton makes you very sleepy so had a doze for an hour or so and still sleepy that evening as well. Still having problems with my hands and fingers very stiff and painful but that should pass once the Rixi gets to grips with it all. Everyone very kind and they do keep a close eye on you. If you move, the alarm goes off on the infuser but they are checking it regularly anyway. That was the problem with the canula being in my inside elbow. I am right handed so kept forgetting not to move my arm. Bit difficult when you are trying to read so the alarm was going off regularly. Only time it didn't was when I had a doze and kept still for an hour or so.

So not a bad experience at all. Will let you know how I get on and when I notice an improvement.

LavendarLady x

9 Replies

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  • Hi LL,

    Really hope this does the trick for you.

    Let's hope we'll soon be hearing brilliant news from you.

    All the best

    Carolyn

  • Thanks Carolyn. Hope all well with you at present. LL x

  • I'm doing very well at the moment, thanks. Sulfa and Hydroxy seem to fit the bill with me. Not exactly pain free but so much better than I was at the start of my journey with this wretched disease. x

  • I am so glad you are feeling better. Take care of yourself. Love LL x

  • Yeah LL, glad you got started, I too started mine last week and they really looked after me op. fingers crossed we will be bouncing by summer !! X

  • Hi Allanah, hope it works for you as well. My hands are still very stiff in the mornings but the Doctor at the Hospital said that should pass once the Rixie really gets going. So at present taking a Nurofen each morning. Let's hope by the summer there is not stopping us! LL x

  • Well done Lovely LL! Will reply to you more tomorrow. Did you feel less tired on your second one? My first one I slept for about three days. However it could have been all the exhaustion/stress the previous week losing my cat. :-( Have had trouble seeing replies to some posts/didn't receive the Forum posts .... then realised things were suddenly going in my Spam?? So just seen your last reply on the other Rituxi thread you posted (Go Go Go .. !!!) as I went looking to try see how you were doing. Oh my .. that Piriton tablet .. I was rolling about .. my head lolling all over and having crazy dreams too! LOL. Need to chase up my blood test results from my infusions on 1 and 15/4. See if anything started working on the B Cells. Have confused issues somewhat with my joints by having my knees injected on 22/4 but they had to be done as I was barely able to do the two stick shuffle from bed to bathroom. Here's hoping we start to feel improvement soon from Rituxi. I immediately got benefit from the Kenalog knee injections. Could get up out of bed next morning pain free without the dreadful wibble wobbles and fear of headbutting the wardrobe! Enjoying it whilst it lasts. Love Julie xx

  • Hi Julie, Yes the 2nd one wasn't so bad for tiredness. The first one, I kept dropping off all over the place. the Piriton really does it. Mine was infused not tablet form. Then the steroids (eating for England afterwards) and finally the Rixie.

    Hope your blood results are ok. I did ask if I needed regular blood tests but was told no and I only needed them just before the next lot of Rixie in a year's time. I think my GP will want to see some blood tests to measure the RA activity anyway and pretty sure my rheumy will too. I see him end of May so will ask him then.

    Glad to see your knees are much better. I still have very stiff hands in the morning and the joints are troublesome all day (thank god for Nurofen!). Woke up this morning with painful wrists as well but put that down to doing some gardening yesterday and weilding a hoe as well as a change in the weather - it is pouring with rain here and the damp always affects me. Will be so glad when the Rixie starts to work (assuming it does - keeping fingers crossed which I can now do - LOL). Love Dottie x

  • Morning LL, i hope you get the benefit from this infusion. I hope things are all well in your area.xxxx

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