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Date: 14.04.2014
From: Julie

Subject: Act Taper Trial

I got phone call this afternoon to say that the team who look after me at rheumatology want me to take part in the above trial. This is mainly because my Das28 score is 5.4 and my crp is always up, at minute its 48. I understand that I will be given infusion of tocilizumab once a month, still taking my mtx. Part 2 of the trial I will be given a placebo of mtx, I wont know and the nurse who is assigned to me for this trial wont know, but I will be well monitored, weekly I think, and if I have any problems or if I don't like how I feel I can come off the trial. I have my own nurse assigned to me, she will do infusion and monitoring and I can ring her anytime, which is good.

I have to have another assessment in 4 weeks for Das score plus couple of tests done, but it looks like it is definitely going to be started.

I don't know if I am excited or scared. For my own peace of mind I need to make sure I haven't any infections, (at moment my throat feels sore) so I am going to see g.p. tomorrow and ask him to send away some sputum tests to make doubly sure that I haven't got staphy back again. (it could be nerves!!!)

I don't have to do this but I think the point of the test is to see if mtx is really needed with tocizilumab( what a horrible name)

Just wondered if anybody else has done this or is there anything I should expect from this particular treatment.
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Date: 14.04.2014
From: Colin W

Subject: Re: Act Taper Trial

hi Julie , the consultant said at some point they should be able to reduce my MTX on tocizilumab , I would go for it as think the drug will do you a lot of good , suits us with high inflammation levels
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Date: 15.04.2014
From: Julie

Subject: Re: Act Taper Trial

Hi Colin, are you on the test aswell?

I cant wait to go on it, how are you finding it, was the infusion okay. I did read up on it and it says it can be quite a while before it kicks in but my nurse told me the lady she gave it to last week noticed within a week and she went back to work after being off for months. How often are your infusions? I will have mine once a month, she said it will take about 1 hour.

Got to get this whatever it is sorted first, at g.p. tonight. I feel as rough as I did before I was diagnosed - reading back on my diary I was actually going to g.p. with same thing, feeling very thick in throat, this was months before I was diagnosed RA. If only they had done proper tests way back then I might not have got RA. Again its me looking for answers!!

One thing I will say and recommend is that doing a daily diary on how you feel etc., its the best thing I ever did and I think everybody should do same,, mine goes back to summer 2012 when problems started.

Take care Colin and let us all know how your getting on with new stuff.
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Date: 15.04.2014
From: Eve

Subject: Re: Act Taper Trial

Hi, I've been put on the study as well and have my first infusion this afternoon!!! I am very excited as I've heard such good things about tocilizumab but I am nervous as I do tend to be prone to infections at time. Consultant said she was nervous but we are giving it a go.

It's a blind trial with the methotrexate, we don't know and the hospital don't know what level of methotrexate we are going to be given after that initial point, I guess so they can do some research as to how well the drug works with or without it but without us knowing so we aren't prejudiced.

The daily diary is a great idea, I really should do it as so much going on and different consultants, I invariably forget to mention things.

With a few of us new on these infusions it will be good to track how we are all doing. I'm really struggling at the moment with pain and fatigue. I reduced to 4 days a week in work but it's still hard and so much other stuff I've not been able to do outside of work, see friends, cleaning and all kinds of things. my DAS score was about over 30 I think on last count and they didn't even count my feet or hips.

Know what you mean about the name, took me ages to get my head around it.

Lets hope it does amazing things for all of us :)
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Date: 15.04.2014
From: Julie

Subject: Re: Act Taper Trial

fingers crossed Eve, it might help us and at same time help others. I just want to feel again as if there is a point to being alive, I want my life back.

Im also struggling today, will see tonight if g.p. will give me something - doubt it!!

Please keep posting info on how you are doing as Im sure a lot will be interested.
xx
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