Anybody else on Firategrast?

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Anybody else on Firategrast?

Postby ElJacko » Thu Jun 14, 2007 12:25 am

I started on a clinical trial 28 May and was wondering if anybody else was taking it?
Last edited by ElJacko on Fri Jun 15, 2007 3:47 pm, edited 1 time in total.
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Postby ElJacko » Thu Jun 14, 2007 12:33 am

Just found this on the GSK website, Firategrast referred to as 683699:

http://www.gsk.com/investors/presentati ... Hunter.pdf

looks interesting
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Postby ElJacko » Mon Aug 06, 2007 2:42 am

Trial report 10 weeks in.

Firstly it involves taking 4 tablets twice a day, which must be better than having injections :D

No side effects except the odd headache when we started, which may or may not have been related.


After the first 4 weeks I was feeling stronger and a lot more confident, I even managed an hour in the garden, moving a load of gravel by wheelbarrow without any major drama. Neurologist examination showed improved strength in arms and legs and things were looking good.

About week 5 I caught a bad cold that stuck around for about 3 weeks. This knocked me back, with a lot of fatigue problems. I saw the Neuro at week 8, he said that it was to be expected with a cold and he predicted that things would pick up again when it cleared. Tests showed that strength had not dropped.

Now in week 10 and the cold is a distant memory (I hope that´s not a new symptom :? ) and I feel I´m back to where I was before the cold and things are looking up. Saturday I managed an hour running (well limping) up and down the touch line at my sons soccer match. I needed an hours sleep in the afternoon to get my energy back but that might have been because I was up at 6.30 to get him there.

All in all I´m feeling very positive about the way things are working out, long may it continue.
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Postby CureOrBust » Mon Aug 06, 2007 4:45 am

its all sounding pretty positive. thanks for the updates and info.
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Postby gwa » Mon Aug 06, 2007 6:15 am

This looks really good. Hope it continues to help you.

gwa
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Postby Lyon » Mon Aug 06, 2007 6:24 am

Hi ElJacko,
Thanks for your participation in a clinical trial and thanks for keeping us abreast of the situation!

I hope it continues to work well for you.

Bob
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Firategrast

Postby craftykate » Sat Aug 25, 2007 6:47 pm

I just found your post. I know it has been a few months but I hope you or anyone else is on Firategrast trial is reading this.

I have been on the trial for nearly 2 months. 4 tablets, twice a day.

I had a bad attack of Optic Neuritis less than 2 weeks after I started the trial. I had IV steroids and though my sight is coming back (right eye), it is still nowhere near normal. It is only 5 weeks since the ON attack, so, I am hoping that my sight will return well enough for me to be able to drive my car safely and do my craft works.

Anyone else on this trial drug, I would love to hear from you.

Cathie (Australia)
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Postby ElJacko » Mon Sep 24, 2007 12:44 am

Trial report 16 weeks in

All still going well. No side effects and the neurological examination showed small improvements... but nothing noticeable by myself, (mind you I´m getting through a lot att work at the moment and that´s probably an improvement in itself). Still the treatment is supposed to stop things getting worse rather than repair the existing problems, so as nothing is getting worse it must be doing some good.

Neurologist is quietly confident that this treatment will continue show some promising results, lets wait and see.
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Postby craftykate » Fri Sep 28, 2007 4:44 pm

I am glad the trial is going alright for you.

Are you sure you are not on the placebo?

I was taken off the trial because when I had my 3rd monthly routine blood test, my liver function was 1000 (normal is 50 or below).

I have been very ill from this and I had to stop the trial immediately. I am having weekly blood tests for liver function levels and since I have been off Firategrast my liver function levels are dropping closer to normal every week.

I also had my first Optic Neurtits attack in almost 8 years, while on this drug. 12 weeks in and my eyesight is still so damaged I can no longer see well enough to drive my car.

I hope Firategrast works for you. It did not work for me.
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Postby ElJacko » Fri Sep 28, 2007 7:31 pm

I´m really sorry to hear that things have not worked out for you. I had a little scare with blood tests at the second medical. There were anomolies with one of the samples so I had to go back and get retested. Second tests were all good and no such problems since. Investigation suggest that it was a lab testing problem rather than a problem with the sample.

Who knows if I´m on a placebo or not , I often ask myself the same question, I suppose I´ll find out at the end of the trial. I suspect not as I experienced a few headaches when I started which I was told was not an unexpected initial effect of the drug.....But who knows at this time.

My specialist has been very upbeat with what he has been hearing about this drug so its a littlle sobering to hear instances where it hasn´t delivered the right results.

I hope that things continue to improve, and with the way things medical are advancing, that there will be something new for you to try very soon.
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Postby craftykate » Fri Sep 28, 2007 11:03 pm

Thanks for the kind words.

I hope that things work out for you with this drug.

I had to have a re test done of the bloods too, because they thought it may have been a dodgy test or some kind of mistake, but, it wasn't.

I am finding all this really hard to deal with because I have been sicker this year than I have in nearly 8 years and it is really scary. I had paralysis down the right side of my body in March/April this year and then I got the Optic Neuritis. It has been very sobering and it has scared me.

I went on the trial because I had been on Copaxone for nearly 5 years and it was great, except by December last year my body had become allergic to it and I started having post injection reactions with every injection (face swelling, difficulty breathing, hives, vomiting etc etc)..........

Of course, now I have had liver problems with a MS drug, I am not able to go on any of the beta interferon injections because a side effect can be liver problems similar to what I encountered on Firategrast..........

On a funny note, I was happy to be off the trial because I thought I would not have to have monthly MRI scans and all those other tests, anymore.

Well, since I have been off the trial I have been having MRI every 2 weeks. lol lol

And I am due for another MRI on Tuesday (2nd Oct) and I have to have all the follow up MRIs and tests like you do once you go off the trial. lol lol

Never mind. It could be worse. ;0)

My neurologist is feeling very sad that this has all happened to me. His first words to me after the results of the liver tests were "Cathie, you have had very bad luck with medications this past year.".........................

I am grateful I had a few good years while I was on Copaxone. I used to think it did nothing, but, I remained relatively relpase free while on it. It is just a shame that I can no longer take it.

I wish you all the bests and I hope you keep updating with your posts because I am really interested to see how things go with the Firategrast trial.
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Postby ElJacko » Tue Oct 02, 2007 2:22 am

Blinkin heck Cathie, you´ve had a rough time with it lately. It must be hard to put any positive spin on whats been going on but keep on smiling and fingers crossed that there will be something new coming along shortly that you can try.

There seems to be something new coming out on a regular basis and I´m a great beliver in that there will be something that works for everybody before too long, we just need to keep on believing. Mind you I keep on buying lottery tickets and thinking that England will win the Rugby World cup, so maybe I´m just an eternal optimist lol But then my Gran always said good things come in threes so......... :wink:

Good luck and keep popping on by to let us all know how you are getting on, I´m sure all on here are hoping that things start to improve for you very soon.
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Postby RuSmolikova » Fri Nov 02, 2007 5:33 am

Hello, friends,
I started on a clinical trial 13 September 2007 - 3 pills, twice a day. I´m still OK - no improvements, no worsening, no side effects (except of headache at the beginning), laboratory tests are OK, as well.
To craftykate: How is about your insurance? The clinical trial papers have mentioned that we have been insured in a case of health damnification... :evil:
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Postby ElJacko » Fri Nov 16, 2007 10:02 pm

RuSmolikova thanks for joining in on the trial. I hope that it all goes well

Just completed the final round of medication and had a full medical.

The specialist is upbeat about the effectivenes of the treatment - the strength in my left leg and foot has returned to near normal, although the foot is still uncoordinated and tires after walking. However I can walk much further than before, before it gets to the useless floppy stage.

The medical went well, including the maths test :D and now I have to wait and see if things remain the same or start to deteriorate.

To be honest I´m a little nervous as I feel that the trial has done me some good and I´m worried that without the medication I might go backwards. On the plus side I´m now allowed to drink fruit juice so I think a large vodka and orange (or two) is on the cards.

I have another medical in Dec and then Jan and then I´ll have to wait and see how the trial goes globally and whether I can start on it again.
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Postby Terry » Sat Nov 17, 2007 10:18 am

To you and your Vodka and Oju. Cheers!
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