Drugs trial didn't deliver

[nools]

Hi

I was wondering if anyone else here knows someone who has been on the drugs trial for LMTX- the drug produced by TauRx? My Mum has been on this trial the past 18 months or so and has been attending a MAC Cinic every few weeks. However, this week was the final visit and despite what we have been led to believe, we have now been told that Mum will NOT continue to receive the drug now the trial has finished. We haven't been given a definitive reason as to why this is the case (I suspect it's funding related)and feel very angry about it, particularly as according to the research clinic, she hasn't shown any signs of decline since the trial began; the drug may well have been working for her.

I feel like we were given false hope by being told she would continue with the meds once the trial was over. Each clinic appointment and MRI scan was very stressful for my mother, as she still does not accept there is anything wrong with her, so for there to be nothing to take from this at the end is extremely frustrating!

I'd love to hear of other people's experiences of this trial, or if they have had similar experiences on another drugs trial.

Thanks for reading, Nools.

 

[Chrismitch]

My OH took part in a study. They said he would continue with the drug if it proved to be effective. He suffered side effects - swelling of the brain - and then the trial finished and the drug was proved to be useless. The hospital was a four hour round trip every six weeks. But we've now signed for a new drug trial due to start soon. We can hope.

 

[nools]

These drugs trials can be quite an effort for us and our loved ones, can't they; journey time, transport, willingness to take the drug (or even accept they may need meds) and stress. I admire how you're trying another one despite the last one not working.

You want to do your best by them, don't you. And we can't let what hope we might have slip away. That's why I felt so let down when they said they weren't continuing to give Mum the meds.

I'm going to wait until our follow up appointment to see if the situation has changed, then if not, I will be making a complaint to the relevant people. Good luck with the new trial!

 

[Dill]

My Dad was on a drugs trial at Bath a few years ago now. He had to stop the trial as the tablets were too big, huge in fact, and he could not swallow them properly.
We never found out whether he was on the actual drug or the placebo - whichever it was did not make a noticeable difference to his Az.
He was glad to take part and maybe help others in the future.
I suppose in your Mum's case Nools it may be funding, or too many side effects in others.
We were given a lot of paperwork that Dad had to understand and sign to participate in the trial, does it say on there what happens when the trial ends?
All the best
Dill

 

[Beate]

Unfortunately there is no guarantee with drugs trials that someone can keep taking the drugs as after all, it's only a trial - those drugs are not approved yet for prescription by a medic. I would therefore not think that you'd have any comeback unless it said somewhere in writing that you would be able to continue with them.

 

[Karenhoffen]

My husband has been on the LMTM trial for Frontotemporal dementia. It finished in October. He has not been put onto the drug as it is yet to go through the ethics committee. Once approved, he will be able to go back on the drug whilst the trial continues for others. That's expected to be early next year. I think he has deteriorated since stopping the trial although he seems more relaxed and less anxious. Both of these suggest he was on the real drug. I have mixed feelings about him taking the drug again. I don't want him to be anxious and I think we are just slowing down the inevitable deterioration. I will try to help him make an informed choice.

 

[Floradora]

My dad was on the LMTM drug trial for 12 months and when the trial finished he had a period of about 4 months without the drug. The trial has now been extended so he started taking the actual drugs not placebo in January. He seems worse now he is back on the drugs, agitated etc. would be good to know if anyone else is still on the trial and any thoughts on behaviour, reaction etc.

My husband has been on the LMTM trial for Frontotemporal dementia. It finished in October. He has not been put onto the drug as it is yet to go through the ethics committee. Once approved, he will be able to go back on the drug whilst the trial continues for others. That's expected to be early next year. I think he has deteriorated since stopping the trial although he seems more relaxed and less anxious. Both of these suggest he was on the real drug. I have mixed feelings about him taking the drug again. I don't want him to be anxious and I think we are just slowing down the inevitable deterioration. I will try to help him make an informed choice.

 

[bugz]

My dad was on the LMTM drug trial for 12 months and when the trial finished he had a period of about 4 months without the drug. The trial has now been extended so he started taking the actual drugs not placebo in January. He seems worse now he is back on the drugs, agitated etc. would be good to know if anyone else is still on the trial and any thoughts on behaviour, reaction etc.

Maybe I am misunderstanding what you are saying, but he was on the placebo previously and now is on the drug itself?

 

[bugz]

These drugs trials can be quite an effort for us and our loved ones, can't they; journey time, transport, willingness to take the drug (or even accept they may need meds) and stress. I admire how you're trying another one despite the last one not working.

You want to do your best by them, don't you. And we can't let what hope we might have slip away. That's why I felt so let down when they said they weren't continuing to give Mum the meds.

I'm going to wait until our follow up appointment to see if the situation has changed, then if not, I will be making a complaint to the relevant people. Good luck with the new trial!

Hi Nools, did your mum manage to get on the real drug?

 

[Karenhoffen]

My dad was on the LMTM drug trial for 12 months and when the trial finished he had a period of about 4 months without the drug. The trial has now been extended so he started taking the actual drugs not placebo in January. He seems worse now he is back on the drugs, agitated etc. would be good to know if anyone else is still on the trial and any thoughts on behaviour, reaction etc.

My husband hasn't been offered the drug yet now it's been approved for the next stage. I am very interested to hear that you dad seems more agitated. This is my concern too. I will add a post if he does go back on the drug

 

[Cwwan]

Anybody still on open label for lmtx? I would like to hear how is it going after the 18 months trial. Thanks for sharing

 

[Cwwan]

Taurx lmtx trial

The last i heard is that the first set of trial result will be available in first half of 2016.

 

[Cwwan]

Testimony

I am very encouraged by this blog. Megan has gone thru the 18 mths lmtx trial and now on open label for almost 1 year and there is no further decline.

 

[Imclineal]

Cwwan resounding to your e-mail

Anybody still on open label for lmtx? I would like to hear how is it going after the 18 months trial. Thanks for sharing

Hi, Received your e-mail and tried to respond to you but could not for some reason.Anyway, my spouse has been on the open label extension aNd appears to have stabilized.We have changed the dosage and administration. She was on a bid dose and it was increased to 100 mg tid. It was further modified in that I give her 2 pills when she gets up in the morning and one pills when she goes to bed. I think there is maximal absorption of the drug with an empty stomach and improved efficacy.
In terms of efficacy she appears to be " more of her old self" and more engaged. Her imemory appears to be improving as well but that is not a global improvement in her memory but in specific areas. I was very surprised when we were in a restaurant and she had to use the facilities and knew exactly where they were located. Also she staring to recall our elevator codes to get up to our unit.So this definitely has been an improvAement of recent. Others, that know her ,also confirmed that " she seems to be getting better".So- I am very encouraged that the drug seems to have stabilized her and there is a strong suggestion of reversal and mprovement. She is tollerating the drug well.
Thanks to the info that a formal presentation of data is to be in May of this year. have been waiting for this news.
Hope to hear from you again, Imclineal

 

[Kevinl]

Hi, Received your e-mail and tried to respond to you but could not for some reason.Thanks to the info that a formal presentation of data is to be in May of this year. have been waiting for this news.
Hope to hear from you again, Imclineal

I think you have to make 5 posts before you can send a private message you only need 1 post to receive one, maybe someone can confirm this.
K

 

[Cwwan]

Hi, Received your e-mail and tried to respond to you but could not for some reason.Anyway, my spouse has been on the open label extension aNd appears to have stabilized.We have changed the dosage and administration. She was on a bid dose and it was increased to 100 mg tid. It was further modified in that I give her 2 pills when she gets up in the morning and one pills when she goes to bed. I think there is maximal absorption of the drug with an empty stomach and improved efficacy.
In terms of efficacy she appears to be " more of her old self" and more engaged. Her imemory appears to be improving as well but that is not a global improvement in her memory but in specific areas. I was very surprised when we were in a restaurant and she had to use the facilities and knew exactly where they were located. Also she staring to recall our elevator codes to get up to our unit.So this definitely has been an improvAement of recent. Others, that know her ,also confirmed that " she seems to be getting better".So- I am very encouraged that the drug seems to have stabilized her and there is a strong suggestion of reversal and mprovement. She is tollerating the drug well.
Thanks to the info that a formal presentation of data is to be in May of this year. have been waiting for this news.
Hope to hear from you again, Imclineal

Hi lmclineal,

This is indeed encouraging. Really happy for you and your wife! Seems like higher dosage and longer period of intake could make a bigger impact. Proud of you knowing how to improve the efficacy of the drugs by taking the pills in the morning which probably the best time for absorption. Will keep u updated. Thks for sharing.