Tocilizumab Clinical Trial?

[EDDIE51]

Am a healthy male age 63, I have been asked to take part in a clinical trial of Tocilizumab and its effect on white blood cells. Is their anything I should be aware of before deciding what to do?

[237SJ]

I`m not an expert and you have probably looked at this http://www.arthritisresearchuk.org/arthritis-information/drugs/tocilizumab/possible-side-effects.aspx My Mum`s chemo drug has a lot of those side effects and the ones that I tell her to keep an eye on are the effects on platelets and white blood cells - to minimize the risk of bleeding and infection.

[Eve]

I'm on it, my platelets and while blood cells have been steadily decreasing while I've been on it.

I wouldn't say it's a drug to be taken lightly at all, depending on dose and such I suppose.

I'd look closely into the effect on the immune system and liver, but, as I said it depends on dose etc...

Also the effect on CRP and possibly making it more difficult to spot some signs of infections - CRP is an inflammatory marker so can be raised in infection (I remember mine was high when my gallbladder got infected) but it is flattened by tocilizumab, I don't get a reading on it. I have to carry a car saying I'm on it.

It can also make you much more prone to infection, I've had a few on it and it can make them worse. Worth considering if you are around people with lots of germs (small children at nursery maybe, especially chickenpox//shingles virus) or sources of infection.

Slaney may be able to help more.

[EDDIE51]

I have seen the reports, I will only be on a low dose and only for 4 weeks.
I will be monitored all the time so I'm not too worried.

[black_cat51]

are you getting paid to be on it, or is it for an illness?

[jno]

I dont think they pay people any more, do they? Bus fare maybe

[Eve]

When I was part of a trial for the drug I got taxi fares and if I had coffee/lunch while there for infusion (usually there a few hours on infusion day) though I was having it for a condition and only once a month. Got kicked off the trial as my liver enzymes went up (apparently quite common) and stayed up.

Getting taxis was fantastic, no more arriving already frazzled and knackered after a day at work and four buses, getting dropped off at the door rather than getting right across a big hospital :)

I do miss them!

[EDDIE51]

I'm healthy they need healthy people to see that any effects are due to the drug rather than the illness. You get expenses and a payment to cover the inconvenience of attending the hospital. They pay mileage allowance or send a taxi for you, I'll probably opt for the taxi , it is in Cambridge and parking is a nightmare.

[slaney]

Interested to see this Eddie - tocilizumab is a fairly well established monoclonal antibody type drug and most of the trials now are Phase 3 trials in patients.
As a matter of interest can I ask who is running this trial? Roche I presume.

You will probably have been given a lot of information on the possible side effects including long-term ones - I should read it through carefully before making up your mind.
Is it possible that you will get a placebo rather than the active drug?

[EDDIE51]

Sslaney yes it is Roche and it is a phase 4 trial, so a well established drug.
I would not do a first time trial too risky.
I have been reading the information sheet and I only get 1 dose of tocilizmab on the first visit, all the other visits are to follow the progress of the Neutorphils (blood cells) via a radio active marker that they will inject

[scooping]

Yes, listen to the advice of the professionals conducting the trial.

[EDDIE51]

^^ I know them well my wife has done several trials with them, which is why they asked me.

[EDDIE51]

Decided to go for it, assessment is Friday 5th September, need to pass that to get on the actual trial.