Rituximab,Toxilizumab,and the Scleroderma Conference in Texas!

[Alexandra-M]

Hello everyone!

It has been a while since my last blog,all my best intentions went out of the window with a downhill turn in health.I remember reading some questions about Rituximab and thought I'd let you know my situation.

Very briefly: I have diffuse systemic sclerosis,severe lung fibrosis,Raynauds , and a severe overlap of Rheumatoid Arthritis (without the rheumatoid factor but that's another story).

Over the years I have been on Azathioprine,Methotrexate, Mycophenelate Mofetil, Cyclophosphomide,immunoglobulin,and most recently Rituximab!

I'm not sure I'm not just poisoning myself to death!

I have had two separate lots of Rituximab about 8 months apart.Each treatment is an intravenous one over a good few hours and 2 weeks apart.A large dose of antihistamine is also given to reduce reactions.

The first time I had it was quite amazing,and about 3 months after the infusion,all my huge swollen and painful joints were good and I found myself going up the stairs without my stair lift,I felt strong and able to do some mobility exercise and have a social life!

But it wore off after about 6 months and almost overnight my symptoms were back.But having had such good results my lovely rheumatologist applied for my funding,and we had a wait and tried some more.And I waited and waited and went downhill,and it never kicked in.At the Royal Free dear Dr Denton said that it can still take effect a long time later,but on seeing the deterioration in my joints (to the extent of needing a wrist replacement at the age of 45) the only remaining drug to try is a new one called Toxilizumab which has had great results for joint disease but not helpful for my lungs.So I am in a bit of a predicament ! Lungs or joints or perhaps run away!

Anyway in amongst all of this I made an exciting decision with the help,of my best friend Fabienne to attend the National Scleroderma Conference in Texas USA!!!

I have been to the conference twice before,the last time was 5 years ago and I felt there may be some new info for me,the lectures this year are fantastic,the link to see them is scleroderma.org/national_co...

I'm quite scared about the length of flight etc but hey I'm giving it a go!I have good insurance and an amazing travelling companion!Fabienne my darling friend! I am hoping to kiss a cowboy,and buy some cowboy boots!

The conference is a wonderful way to find friends and support as well as information....I shall let you know of anything that may help us all!It is at the end of this month.

So as always I am here to try and help if anyone may need a friend,and in the meantime,for me the only thing that works at the moment is to bring my attention to now.not later or yesterday ,right now,yes I hurt,but I'm ok,warm,safe,I have a cuppa and a loving cat,so all is well.

Much love to you

Alex

Xxxx

[SandraMarie]

I've been told that other than antibiotics (which I refused, on a daily basis) to stave off the constant chest infections, there is no treatment whatsoever. Maybe you're right and you're just poisoning yourself? It's always a bit of a lottery with pharmaceuticals, as you so often end up taking yet more to counteract side-effects from previous ones and so it goes on. In the end all you're doing is lining the pockets of the giant drug companies. I'm sure going to America is really not necessary either,as, in this time of amazing technology,anything discussed at the conferences can be seen on the internet. Save your money and your health, and put it towards some surgery or something???