Today I had my first Rituximab infusion. I really wasn’t at all sure what to expect the reality to be as I have heard and read so many horror stories about side effects to this particular drug. Each one of us reacts so differently to these drugs so we can never be sure whether a reaction will occur.

I saw my consultant at the end of September and it became clear that the time had passed for tolerating this uncontrolled disease (perhaps accumulating further joint damage for the benefit of medical science wasn't the way forward ). Backtracking on previously taken medication was not having the desired effect despite my unerring optimism! In the last 23 years I have had just about every DMARD, some twice, numerous anti-inflammatories, steroids at varying levels throughout and two anti-TNFs. Infliximab was like a wonder drug, fast response and excellent results ... for a time, then it gave up the ghost! Enbrel likewise was really good and I had about 7 years before the problems started. Unfortunately, due to knee surgery last year, I was kept off the drug longer than the recommended 4 weeks. Consequently had a huge flare and things went downhill from there. Methotrexate was re-instated in June after a a 12 month absence due to prolonged neutropenia and I really hoped things would get back to where they had been previously. They didn’t and here I am ... Rituximab! The next drug in my armoury against this ruddy disease!

I arrived promptly, 20 minutes early actually, I was raring to go! In I went. 8.15, all set for the day ahead; two books, Sudoku, frog solitaire (yes, very cute!), quiz questions for a quiz I need to set, netbook, two bottles of drinks (non-alcoholic, of course!) and the necessary lunch (contained in my now redundant Enbrel travel coolbag!)! I am all prepared ...!

First off, two paracetamol tablets followed by insertion of the Venflon canula, once a suitable vein had been found which wasn't easy, believe me! Then came the bolus of anti-histamine and the methyl-prednisolone (clearly I’ll not sleep again tonight!). This little lot is washed through with a bag of saline. Obs are done every 30 minutes, my blood pressure is oddly high, weird! It’s now 10 am and time to start the Rituximab. The bag is hooked onto the stand, the other end of the tube inserted onto the canula, the speed set, very slow to start, and off we go!

The rate of infusion was increased with each satisfactory set of observations. What can I say, four cups of tea and lunch passed uneventfully and the infusion finished at 2.15pm. I left with my instructions for the next infusion in two weeks time, along with blood test form, letter for GP, clinic slip and alert card! Does the lack of side effects bode well for a success for Rituximab? I don’t know. I have never reacted badly to new drugs previously, although some just haven’t worked! So who knows?

I thought I was embarking on a journey into the unknown but there was no discomfort, no pain, no ... ... nothing!! I couldn’t have had a more straightforward day

Watch this space ... come tomorrow I may just have an all encompassing rash and a humungous headache and be en route to A&E pronto!

hi Lyn,

glad to hear things went smoothly and well for you in what sounds a very scary process .. especially into the unknown !!

hope you had a good night and that you awake feeling positive,

good luck,

Suzanne x

Hello Lynn

I have read your blog with great interest. The proceedures exactly the same as mine. Yes they are very thorough,
and so they should be I suppose with such toxic drugs. I was given a sandwich and chicken soup for lunch.

I had my second infusion on Wednesday and my face is still very red with a rash, although my head is better today
just feel exhausted - yes exhausted doing nothing.....

Hope you are ok today and not like me.

Take care Lynn

Rose x

So glad it went well Lyn.

Doreen xx

Feel like a bit of a fraud when I read about what others like Rose have experienced! It's now the early hours of Tuesday and I am still feeling okay ... no side effects of any sort. Seems rather strange really because for a toxic substance like Rituximab I would have expected something, silly though it may seem

Don't get me wrong, I'm not actually looking for problems but it does make me wonder whether my lack of any sort of reaction may not be a good thing! I have been on prednisolone in varying doses for 23 years so I guess I wouldn't expect a 'steroid' reaction, my body is clearly very used to them. Perhaps the stuff hasn't 'grasped the nettle' yet and it will hit me big time after next weeks infusion.

It's all a bit of an anti-climax really Still pumped up with steroid, still got painful knees and now I've got stuff floating about my bodily systems destroying B cells right, left and centre and nothing to show for it! Just a slight rash or a bit of lightheadedness might have been re-assuring!

Heyho, ... thank you all for your thoughts and kind wishes

Lyn x

Hi Lynn,

I am very pleased that you have not had an reactions of any sort. That good news, but I know
what you saying it does make you wonder 'is it working' 'is it an omen' 'I feel the same' 'i am still in
pain' . Let us both help that it will do us good.

Rose x x

awwww lyn hopefully it means it is actually doing what it is supposed to be doing and that is kill the B Cells to treat the RA. Instead of running around your body trying to cause side effects.

I have everything crossed that it behaves and does it job.

Love
Belinda
xxx

Hi Lyn

Sorry I m late catching up with your adventures

Really good to know you tolerated rtx. so well and I too have wondered whether having little or no side effects means its not doing what it supposed to do, but I don t really think that is the case. When I was on infliximab ( for 7 months ) didn t work at all only had the pleasure of an awful itchy rash round my middle which wasn t nice. I started Cimzia end of July with no side effects and feel the best since I ve had RA so you just never know, as ever everything is so unpredictablbe.

I hope all continues to go well and you start feeling the benefits.

Best wishes Julia xx

Hi Lyn

Repeat after me. I will not have a reaction. I will not have a reaction.......Positive thoughts

See you on thursday.

Love Sheila x

Good luck for tomorrow Lyn.

Sheila x