My ritixumab story started back in jan 2013, so to bring it up to date I'll try to give a brief outline of the story so far. Back then I was on enbrel and metho.and had been for 6 years, but it was wearing thin, so it was decided to try ritix.
This was the answer to all my prayers, no more metho.(nausea) and the opportunity to remain drug free for a long period of time, hopefully a year.
Unfortunately the period of time between stopping the old drugs and starting the new was about 3 months, during which time I discovered that without the old drugs those good old days of the cronic flare, were alive and well, bubbling just below the surface.
So after a few depo shots it was time to finally re-introduce the wonderful,oral prednisolone.
My previous experience of pred was the struggle to come off of it, it took me a long time to break its spell and the elation of beating it was a huge personal achievement.
So it's disappointing to be back in this position, if I had known it would take this long to qualify for the ritix. I would have preferred to stay on the old drugs a little longer, but i convinced myself that in order to qualify I needed to prove to myself and the powers that be, that I do qualify for this very expensive drug. to be continued.
steve
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Bobbarge
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Was you coming off all drugs with your rheumys knowledge? It takes a long while for the anti-tnf to come through. I am on that journey as i speak and i am still on mtx and the steroids and there is no way i could drop them all at once as i am in cinstant pain now so i would dread what i would be like without them. I wish you well on your journey to anti-tnf.xx
hi sylvi,initially i stopped metho.due to nausea,but 2 weeks later i was told to stop enbrel, because blood tests came back inconclusive for TB, a chest xray followed and more blood tests, still inconclusive,, but xray was clear, they then wanted to do a scratch test but when pressed by me, they admitted that that test too isn't conclusive.
The impression i was given in my original consultation with the rhum. nurse was, it will take a few weeks, after the tests and delays waiting for results they said it must now be authorised that took 3 weeks, i was on the phone to the rhum. dept. probably ten times but due to staff shortages, every phone call was to a message machine, which often took 2 or 3 days to get a response, alas i did reach my goal.
I'm as baffled as Sylvi is Steve - why did you have to come off the other meds if you've already qualified for biologics (Enbrel)? What a shame to be forced back onto Prednisolone I would be really fed up too. But hopefully the Rituximab will work really well for you when you do get it finally. Tilda x
hi tilda, I tried to explain the logic of not having TB and that because enbrel reduces the immune system TB would have been overwhelming after 6 years but in order to qualify certain hoops needed to be jumped through, probably right that caution is the best policy but it does make me feel like banging my head on a wooden table or closing my eyes and counting to ten.
I started Rituximab in march after Hurmia started to fail. Had nothing other than parcentmol for 2 months. In mid April was put on azathioprine as I was told I has to have something else with the Rituximab, and I had already tried 5 other drmads. So I was told Rituximab around 3 months to start working and new tablets 12 weeks. Just started 3rd week when stomach ache got so bad and projectile vomiting began, I could not keep anything down. Now off azathioprine and still waiting for Rituximab to do something:(. Will see biologics nurse next month. In the meantime rhumy doctor would not let me have jab for pain as he wants to see how I get on without it. Pain in places that didn't used to hurt, tiredness and not sure how I can carry on working/driving that's how. Oh well all you can do is carry on and live in hope. And the sun is shining and that always helps. On another note I was unable to go to china for my sons wedding as I cannot stay still for an hour without sizing up and therefore could not cope with flight and risk of infection as I did not want him to worry about me on his big day. They don't ask you about how RA effects you life while waiting for drugs to work.
Hi ozzy, Sorry to hear you was unable to make the journey to your sons wedding, hopefully you will reach a point where the ritux. kicks in and gives you some relief,
Was part way through writing a reply but have had to stop because I'm on the way out for a hospital appointment - hence the "deleted comment" above. I will reply properly when I can but in the meantime just wanted to say something positive - I am on Rituximab and although it is not by any means fast to work, it is now really helping me and I hope that, in due course, it will work as well for you.
Anyway finally the ritix. was authorised and the first infusion was on 26th of april 2013, I drove to the hosp. ashford middx. arrived at 9am in their new infusion suit, I was given a reclining leather chair and offered a cup of tea, they needed a urine sample and gave a pre-med, this took an hour or so before getting plugged in to the drip.
The nurses station was centrally placed so that if needed they were easily reached, every half hour an your alarm sounded and the nurse took your blood pressure, temp and asked about your well being, I was given a dvd machine and a case full of donated dvds, they gave me several cups of tea and sandwiches and i can only say the whole experience was a delight.
during the proceedure i did feel quite tired and kept nodding off but that made the time pass quickly, finally they unplugged me at 4pm. to be continued.
Just want to say I hope Rituximab (eventually) works as well for both of you as it has done for me.
I know everyone is different but, In my case, I have only had two Rituximab infusion cycles, a year apart, and the only other RA drug I now take alongside is prednisolone at a "maintenance dose" of 7.5mg daily (occasionally more if needed). Rituximab doesn't work quite as well for me as either Infliximab or Humira did previously, but if I hadn't had either of those previously, I would probably feel that this was the best thing since sliced bread! I met a lady at the hospital who was going happily a year between infusions and whose consultant had to persuade her to have her next dose of Ritux because she didn't think she needed it! Conversely I met a chap who finds it helps him for three months and then he struggle until he is allowed to have another infusion six months later. But even he said he wouldn't be without it.
I really do hope you both find that the Rituximab helps you in due course.
Thanks for the encouragement as it has still been on two months since I started. I must admit that being given hot cups of tea while the infusion was being done was a treat albeit a strange sort of treat.
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Meds all stopped
35 Days to go
Anti tnf
Methotrexate and Prednisone
Telling you my fears because I just can't tell my family
