Ibudilast

[Olivia H]

This has only just come to my attention but others may know more about Ibudilast, a drug approved in Japan? Now at a stage 3 trial in USA I believe, and I've only discovered this by chance today!

[Kayleigh]

Hi Olivia,

There is a recent article about it in ALS News today:-

https://alsnewstoday.com/2019/04/17/...-als-patients/

Best wishes
Kayleigh

[Olivia H]

Thank you

[Jer788]

Hi Olivia, I started taking it before I came to the UK and have started again now but I’ll need to find something to counter the nausea first. Possibly just me, but taking morning and night I constantly feel like throwing up.
Regards Jerry

[Olivia H]

Thanks Jerry. The nausea must be awful, but do you feel the medication itself has slowed your condition or improved things for you?
Regards
Olivia

[nunhead_man]

Hi Olivia,

Thank you - this was featured in a recent webcasts from the US - I think it is a US only study.

Note that it is a PDE4 and PDE10 enzymes and the MIF protein inhibitor.

Had to smile about your question about slowing the condition - my mum always asks me if riluzole, has had any effect on me and of course I do not know because I do not have another 1 of me that is not taking it :-)

Warmly

Andy

[Gillette]

Z

Had to smile about your question about slowing the condition - my mum always asks me if riluzole, has had any effect on me and of course I do not know because I do not have another 1 of me that is not taking it :-)

Warmly

Andy

I am on a double blind drug trial for a different drug. I have discussed it with the research team and said that I hope I am on the placebo as my MND is moving on quite rapidly. I am also taking Riluzole/Rilutek.

[Olivia H]

Hi Andy and Dina
Yes they are very good points, how can we know what impact something is, or is not having, because we are all so different. I sometimes wonder if there are lots of subtle variants of this illness, or protective factors that some of us have and don't even know about. I've had this for 7 years, don't take Riluzole, do take lots of antioxidants and copper 'off the shelf', who knows why one person has a different trajectory to another. I am very positive, but then it is easier for me to do that because I am not as bad as so many, although I can hardly walk of course.
Stay defiant.

Olivia.

[Jer788]

Hi Olivia, as Andy says you just don’t know as we’re all different and I haven’t been regular with it due to the nausea. I was also told by Ellie that you may need to be taking Riluzole also which I am not and 100 mg a day. I was taking 60mg reduced to 40mg. Let me get back to you all.
I am starting it again from Monday.
Best wishes Jerry

[Jer788]

Hi Dina, I hope so too. I seem to be deteriorating quite rapidly too. Stay positive though the words seem so empty to me from people who aren’t in the loop xxx Jerry

[Gillette]

Hi Jer778,

Do you constantly feel as though you are playing catch-up because of the rate of deterioration? I think that is one of the most difficult things to cope with, psychologically.

[Ellie]

Jerry, the clinical trials which showed positive outcomes for people with ALS were, and are, based on taking Ibudilast as an add-on therapy to Riluzole. And that's the basis of their patent, currently being considered by the US authorities.

Does your Neuro have to initially prescribe it or can your GP prescribe it? IDK what the UK protocol is, but I know someone will jump in to clarify it if you aren't quite sure.

Love Ellie.

[Vivek]

Dear pals friends
There was a research showing benefits of ibudilast with riluzole.
Kindly advise how to get ibudilast in the uk.
Best Wishes
Vivek

[Mandy124]

Hi Vivek,
Quite simply there is no easy way to get Ibudilast in the UK
There is a drug charity in Holland that will supply it if you get a DR to write a prescription, mu Neuro refuses to do so as its not licensed for use in the UK.
It can be bought directly from Japan at a number of sites, I have just ordered some at a cost of £700 for 1000 tablets
probably import duties and Vat to pay yet so its not cheap!
Dave

[Lynne K]

Hi Dave, please let us know how you go on with your Ibudilast. Thanks, Lynne