Dazals trial

[Anne123]

Hii everyone,

I dont know if anyone has taken part of this trial with dazucorilant or lighthouse trial. (Triumeq)

I know there can be differents in the trials here and in the uk..

Buth my dc suggesed to me that i can try 1 of these as soon as possible because i am still in the 1 year of symptoms. I am a little bit scared because i go on or last family vacation together soon, at least i think that. Dont know what the future holds. Buth i really want to be on my best when we fly off to turkey.. And also want to take every change to stay here as long as possible☺️ i lean more to the dazal trial myself..

Buth is there someone who has taken part of this trials? I can not find a lot of people here that are following this trial..

Thanks !

[michelleroberts]

Hi Anne123 I am on the Lighthouse trial - Triumeq. I was diagnosed in Feb this year after 16 months of tests. I have been taking the drugs for five weeks and no debilitating side affects. The first few weeks I was more tired than normal and my twitching increased and they seemed stronger but that has settled down.
My trial is from Sheffield - it does take a few weeks to set up as there are lots of tests to have, my first appointment was 4 hours, you then wait 2-3 weeks to make sure all is ok with bloods, my second appointment when you collect the drugs was almost 6 hours with lots more tests!
I am sure you will be ok and maybe you can fit appointments around your holiday?
Enjoy Turkey xx

[Vivienne47]

Hi Anne123 and Michelle, I am also on the Lighthouse II trial with Triumeq, 7 months in and still hoping. . . I was offered six trials at King's and studied the science carefully (I am a scientist). I thought Triumeq was the best horse to back currently. I'm happy to share all the background data I found on it if you want to message me with your contact details.
I believe it is addressing a possible causative mechanism (activation of Herv-K) There is good data on this causing mischief in cells and we all have it in our bodies from when we were very primitive humans. It's an ancient retrovirus that has got into our germline in as many as 60-100 copies dotted around. It is only when it gets triggered in neurones that the damage starts to happen and possibly cause our ALS symptoms. Triumeq is an HIV drug and at least two of its 3 components have been shown to be active against Herv-K reverse transcriptase and integrase - these enzymes help the virus multiply and insert itself once activated. It can no longer make active infectious virus after millions of years of silencing, but it CAN make some nasty proteins that are toxic inside neurons.
The other drug I have put my money on is Proleukin (Interleukin-2) following the MIROCALS trial. The data is very good from the Phase 3, through the detail of this has yet to be published. I have obtained this privately. Again I can share details of how to get hold of it via a London consultant if you message me.
Good luck both of you on your battle with this insidious disease. Mine started in my right foot and so far has not moved further than my right hip. Very debilitation as it is affecting my walk badly, but I feel fortunate that the rest of my body is so far untouched. Perhaps Triumeq has something to do with this?

[Vivienne47]

I realise I should have put Anne123 and michelleroberts to hotlink to your names and alert you to my post. I'm new to this forum.

[Ellie]

Vivienne47 A warm welcome to the forum. Sorry you've had to join us but heartened to hear that your symptoms thus far are still confined to one limb - long may it continue, Triumeq or not.

The other drug I have put my money on is Proleukin (Interleukin-2) following the MIROCALS trial. The data is very good from the Phase 3, through the detail of this has yet to be published.

Are you referring to the MIROCALS Phase IIb trial? I’m not aware of any Phase III trial being completed but, if you are referring to Phase IIb, yes, it produced some tantalising results.

Wishing you the very best on Triumeq/Lighthouse Trial.

Love Ellie xx

[Aadam]

Vivienne47 Hope you are well as can be... interesting re Triumeq - I sent you a private message if you wouldn't mind checking. Thanks.

[Vivienne47]

Here is the King’s press release on MIROCALS

[michelleroberts]

Vivienne47 thank you for the information xx

[Ellie]

Here is the King’s press release on MIROCALS

Yes, that’s in relation to the Phase IIb clinical trial.

I've posted an update on the existing MIROCALS thread which people can find here if they're interested.

[Anne123]

So finally being approved for the dazals trial! Starting today taking 4 soft capsules at once at the same time everyday. Hoping the side effects will stay away.

Happy to be in a trial, feels like doing something against this wolf. Having symtpoms wide spread with the biggest problem in my right arm.

The doctor was optimistic that my age could be good, but he could not give any guarantees.
Some people I have met in the same age group have a slow progression with complaints all over the body. But no muscle loss yet.

Sometimes it is difficult to do exercises given by the physiotherapist because the cramps become very severe. But keep courage.

[Ellie]

Anne123 Best wishes for the trial.

Have you tried taking magnesium glycinate or CBD oil for the cramps? Or, if your muscle tone is high, your doctor could prescribe Baclofen.

I'm sure you're warming up before doing the main stretches but it helps if your muscles aren't actually cold too, so keep them nice and cosy. xx

[Anne123]

Ellie. Thanks for the advice. I am already on baclofen for a while. Buth the CBD is a good one, i will ask my mdl arts if i can take it, i know that it can be really helpfull. A lady on my job was taking it for unexplained neurologic problems and pain. Also it helps to calm down somewhat. Stupid that i didnt remember it myself.

I need to be more patiënt with giving my muscles the time to warm up. Still not so good at it🙄 Buth being patiënt is better than cursing because my muscles are tighning up out of the blue.

Still trying to adjust after 5 months, find it very difficult because you want so much. Buth i know it is the best for my body.