Anybody else on Firategrast?

ElJacko · Posted: Wed Dec 12, 2007 1:46 am Post subject:

Yesterday I had another medical, 1 month after stooping taking the tablets.

Over the last 4 weeks I´ve felt that things have been going backwards, but at the same I had flu like symproms for about 2 weeks. I feel as if the coordination in my leaft foot and leg has regressed to near what it was at the start of the trial. My specialist however measured the strength in the leg a foot and said that they are near normal and suspects that any worsening that I have felt could have been caused by the flu.

I suppose the positive is that if I have gone backwards since coming of the treatment then that could imply that it was having a positive effect.

On the negative side I was told that GSK are pulling out of New Zealand so we don´t know how that will afftect my chances of joining an extended trial if that was to go ahead.

Lyon · Posted: Wed Dec 12, 2007 7:45 am Post subject:

ElJacko · Posted: Thu Dec 13, 2007 1:02 am Post subject:

Bob, nothing was written down or explicitly stated but it was hinted that if this trial shows promise then the trialists would be well placed to participate in extended, or longer duration trials.

My neurologist is not too happy about what is happening, apparently its not just NZ that they are withdrawing from. They are however comitted to the existing trials and he is exploring whether further trials could be conducted from Australia. The blood and urine samples are sent there now so it shouldn´t be a problem.

Lyon · Posted: Thu Dec 13, 2007 8:29 am Post subject:

Oh gosh, time for me to double click Google earth! Australia from NZ is evidently a quick and inexpensive trip.....or what good would them continuing the trial in Australia do you?
Bob
_________________
Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.

ElJacko · Posted: Fri Dec 14, 2007 2:11 am Post subject:

They already check the blood and urine samples over there so I would hope that they would just send over the neurologist´s report and scans and run the administration from Oz, and send the medication back over here.

I can´t see that there should be a problem but I suppose politics and lawyers would probably find a way to scupper common sense.

Lyon · Posted: Fri Dec 14, 2007 10:21 am Post subject:

Frutten · Posted: Sun Feb 17, 2008 2:33 pm Post subject: Firategrast in Sweden

Hi people, hope you have'nt stopped discussing in this forum... Just found it on the internet.

I'm living in in Stockholm, Sweden. I got my MS-diagnosis in november 2007 after have experienced some symptoms since 2001... I was immediately put on the on-going trial of Firategerast in Sweden. This is my first MS-treatment.

ElJacko · Posted: Sat Feb 23, 2008 2:50 am Post subject:

Hi Frutten

Frstly welcome and thanks for having the courage to join one of the many trials.

How are you finding the treatment? I stopped with the tablets around Nov 07 and I have just been having the follow up monthly medicals.

I had no relapses or worsening of the condition since starting the trial and my neurologist is of the opinion that I´m in better shape since we started. Thats not to say I don´t have any symptoms but I do feel stonger and more confident.

I don´t have another check up now for 3 months. I´ll be very interested to hear how you get on as people I have spoken are generally upbeat about this treatment.

Good luck and fingers crossed that this might be some genuine light at the end of the tunnel.

RuSmolikova · Posted: Sat Feb 23, 2008 4:55 am Post subject:

Hi ElJacko,
happy to hear some news!
I´ve got the same experience as you do. I had no relapses or worsening since I have started the trial (september 2007). Soon will be at the end of the treatment (second lumbar puncture next week). My neuro cannot believe it but says that she has never faced any improvement of MS patients, but me. Small, but one! Smile

ElJacko · Posted: Tue Feb 26, 2008 1:51 am Post subject:

Hi RuSmolikova,

I´m really pleased that it appears to have had a positive effect for you to. It´s too early to start getting excited aboutt this treatment but good experiences like ours help raise my spirits. Fingers crossed that others experience the same.

RuSmolikova · Posted: Tue Feb 26, 2008 3:14 am Post subject:

Three other guys on Firategrast which I know personally at the same MS center do mention the same as me. I met one of them in a gym last week (I haven´t seen him for almost 2 months) and I can confirm light improvement, too. Wink

Fingers crossed!

samiban · Newbie Joined: May 09, 2008 Posts: 1

Frutten. Är intresserad av hur din medicinering med detta läkemedel går. Hade varit mycket snällt om du kan maila mig. Min sambo har MS och är just nu på Tysabri behandling.
Mvh Sami

samiban@hotmail.com

RuSmolikova · Posted: Sat May 24, 2008 12:35 am Post subject:

Latest news:
I am in a follow-up phase of the trial, now, e.a.: three month without any medication - still no exacerbation, still no relaps. No activity on MRI).

ElJacko · Posted: Sun Jun 01, 2008 9:34 pm Post subject:

Great news,

It's around 7 months since I stopped with the medication and things are pretty much as they were back in Nov. I hope that others are seeing similar results

ElJacko · Posted: Sat Nov 08, 2008 6:16 pm Post subject:

I had the final medical on Friday. I was assessed as been very much the same as when the treatment stopped a year ago. I still have the same problems as when the trial started but not as bad and if I take things easy I don't feel like there are any problems at all.

The doctor is hopeful that they will go on to an extended trial but I imagine that we'll have to wait for all the resuilts to come in first.

Good luck to all those still participating and I hope that we may be onto something here.