The fear and anxiety has taken over unfortunately.

I am seeing my gold clinic nurse tomorrow and I am going to tell her I really cannot go on Rituximab.

My reasons are because I have been allergic and had side effects to so many of the drugs that I am being honest here the thought of it being infused has freaked me out, big time.

I really believe we cannot just keep chucking drugs into our system and not thinking about the long term use on them.
I had a gallbladder operation on 30th June, 2011 i was supposed to be in hospital one day and it was done under keyhole.
Well this one day did not go so well. They discharged me from hospital the day after and I was in so much pain and thought well I am used to this I can deal with pain at home. I got home and still the pain did not even subside with oromorph and in the end I was advised to call an ambulance. By the time they got there my temperature was high, my pulse was 170, yep I meant to put 170. I felt dreadful, so rushed back into hospital. They discovered I had a huge abscess and was put on intravenous antibiotics, 3,250 dose a day. They thought I had also developed the flesh eating disease and so a black line was drawn around my very very swollen stomach and said if the redness goes over it I am in theatre having major op removing the skin and infection. (VERY VERY SCAREY) They swopped to an even stronger antibiotic, thankfully it never went over that line. But one night I woke up with a wet feeling and it was discovered the abscess had burst the belly button stitch open and without going into detail it was gross and I was having to wear a colostomy bag over my belly button whilst this stuff came out of me. I also had alot drained out with a needle under a radiographer. So one night turned into 3.5 weeks in hospital, it was horrendous and very scarey.

The reason I told you all the above is because I was told all that happened because my body is so severely immune compromised and that is why the abscess formed. Now I was off enbrel and mtx nearly 4 weeks before my operation took place and the above happened. What the hell would happen if I had already had the rituximab infusion in me, you cannot take it out, it lasts for along time.

I am thinking and feeling that all I want to do is stay on the mtx injections up them a bit every four weeks, and just see what happens. I know that means I wont get out the wheelchair at pressent but I am only 45 I got a long way to go and I dont want to keep chucking meds in and not thinking about the consequences.

So sorry for the waffling but I just needed to get it all out.

I am not sure what my consultant will say when i tell him I dont wish to go on ritux, I dont understand why I cannot try another TNF drug before I hit the Ritux, because enbrel did work so well for me for three years.

I dont think my anxiety could take any more worrying if I am totally honest.

Love
Belinda
xx

PS again sorry for waffling just needed to let it out xxxx

I was once in your position Belinda, and strangely enough it concerned Rituximab.
In the end I sat down and wrote a letter to my consultant, telling him about my thoughts and worries and asking him if I could stick with what I am on now.

He readily agreed and said that if I changed my mind to just let him know.
Soooooooo obviously I can't say what YOU should do but I do know i worried and agonised for nothing. Perhaps you could give it a try?

Oh Belinda, what a truly horrible, scary time you had in hospital! It`s hardly surprising you should feel as you do, and you really need to let your rheumy team know how you feel, and your reasons for feeling as you do. You could even print out the post you put on here, as it was obviously written straight from the heart.

Take care, and good luck with your consultant.

Kathleen C x

Hi Belinda,

Like others, I really am not surprised that you are so anxious about startig Rituximab, with what happened to you in the past.
The drugs for RA are really horrible, if people only knew the stuff we have to take!
I'm sure your rheumy team will respect your wishes, they are not there to force you to take drugs, only to advise. No-one has to take drugs or have any treatment that they do not want these days.
Good luck for tomorrow, I hope your nurse can come up with a plan for your treatment that doesn't include Rituximab.
We'll all be routing for you!

Love Doreen xx

Dear Belinda

Your feelings are 100% understandable. What happened to you in June 2011 was horrendous and yes our immune compromised systems leave us open to serious infections. You have every right to voice your feelings about the drugs.

I went through something similar last year. I had a lump for a year which was stable on Enbrel but which flared into cellulitis when on prednisolone (50mg per day) for something else and then after the second Rituximab infusion took off big time. Abscess which was drained under anaesthetic, but which kept draining for 6 months in a revolting way - dressed by district nurses every day from Christmas Day onwards. Finally had my shoulder replacement removed which was very infected and the source of infection. Incision hole and scar still clean thank goodness.

After this my rheumy said no more biologics for you maybe ever because of the infection - last year. Now he is proposing trying Rtx again and I am a bit nervous too, though do recognise the RA needs some help.

He also said to me that once on to the B cell drugs, you dont normally go back to anti-TNF. It seems to be a directive.

There are other drug options, he mentioned Abatacept and Tocilizumab which are infused/injected more frequently and work differently, so presumably a shorter half life (or whatever).

He gave me Leflunomide this year which really upset my GI system in May and I became seriously ill. Although a daily tablet, it can stay in our systems for up to two years. I'm feeling much better now though.

Lots of luck for tomorrow and dont be afraid to say how you feel - it is your body and your pain.

Take good care Belinda and let us know how you get on,
Lizxx

Thank you everyone for your support and advise yesterday, it really meant so much.

I spoke to my specialist nurse and she suggested an appointment with my Consultantto disc uss and see if he can put my mind at rest . She totally understood the way I was thinking because of what happened this year, but did say the results with it have been fantastic.

I have had all the blood tests done today as if I was going to go on it. That way she said if I do change my mind and want to go on then all the boxes are already ticked.

I see my consultant on 3rd of November, so I have time to write down all my questions I would like him to answer for me and also tell him my worries. My nurse said by the time all the blood results come back I would have seen the consultant by then, IF i do want to go on it

I feel so much happier in the fact I now know I dont just have to go alone with it and I do actually have a choice. If that makes sense.

Jean I am going to ring the helpline tomorrow for some help as well. Thank you xxx

Again I would like to thank you all and give you all great big hugs from me, you dont know how much you have all helped. I went into the hospital today so much more confident.


Love
Belinda
xxxx

That's great Belinda!
So glad you are more confident in the fact that it is your body and your decision to make!

Love Doreen xx

Well done Belinda

Hi Belinda
you have certainly been thru so much, no wonder you have doubts. lots of good advice on here. just like to wish you all the best whatever you decide. xx
sue v