Drugs trial

Hi, I am 37 years old and was diagnosed with SLE 9 years ago.....it has been a hard struggle. I have had numerous treatments over the years and, steroids, cyclophosamide, rituximab and the list goes on and on.....unfortunately none of these no longer work for me.....I was contacted this week from the hospital to see if I would like to partake in a new drugs trial, Epratuzumab....another infusion type drug....however the trial is for 1 whole year and they are unsure of any side affects as such as it is only at the phase 3 stage.....also some will get the drug and others a placebo.....I am not sure about this as it may work, it may not and I may not even get the drug....also I have 2 very young children.....I need to make sure i am well enough to look after them................has anyone else been invited on this trial?

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  • For whatever reason they do not encourage people of my age(63) to go on these drug trials.Perhaps you could get a second oppinion before you decide.

  • Hi Lexus, I havent been invited for this trial but have been on a biologic agaent trail before. i got the active ingredient and it was only a stage 2 trails so only lasted 6 months but it was the best 6 months ive had since my diagnosis.

    only downside was cause it wasnt affective in all cases, i could not continue to get the treatment after the trial finished.

    make sure you talk through all the pros and cons, all treatments have side effects, you should be able to pull out of the trial at any time. also if it isnt working the medics should pull you out of the trial and offer you another treatment.

    just make sure that you can stay on it once the trail ends if it has worked for you. also if the trial is successful those on the placebo are more likely to be offered the active drug, but check is this is the case in this trial.

    i would do a trial again if offered i was 35 at my trail drug but have no dependents

    still for me it saw the best choice i ever made. long to have those days back again. good luck in whatever you decide. chat it through with lots of people.

  • Hi Lexus.... i was looking at this on the tinternet and it seems to have positive results so far as it works directly on the B cells.... i was on the Belimulab study... well i still am 3 years down the line... ive done a few trials some with positive and some with negative side effects but nothing with a huge reaction.. i have children too, but for me personally to do the trials was important as any advance was an improvement... im pleased to say the belimulab works wonders for me...please god lets get it licenced!!... but i understand your dilemma just make sure you are well informed before you make your descision xx

  • Thanks everyone.....I have had a 2 hours talk with my consultant this afternoon and have decided to go for it.....it does sound really positive....hopefully should be starting in 10 days...I am now looking forward to it, hopefully it will help me feel better xxxx I will keep you all updated......

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