Therapy with ibudilast - failed

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jethro

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just to inform forum that i was hardly waiting for a new als prolonger, paid reasonable, didnt pass the customs, so all my ships - sinked.
they showed me ibudilast on customs. opened the box, saw all vials and powder, kiss godbye.
intented to be as a add-on to rilutek.
it is returned to sender.
i'll try other wave to get it. by then, stay good without any kind of flags.
 

Nikki J

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I am sorry Jethro. What a disappointment
 

KimT

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I'm so sorry, Jethro. Every PALS should have the right to try whatever they believe might help. We can't even get it together in our Country to legalize cannabis in every state. My ex-husband, out of the kindness of his heart, was mailing me some from another state for a year before Florida became legal. But if one country can't even agree, I guess there is little hope for some kind of International agreement for terminally ill people.
 

jethro

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i'll find a way... through my journey to get a trial drug, maybe "they" invent real one :)
i dont know what to do with all these supplements i bought for a 1,5 years. i wont survive, so now i'm wiser: i dont buy anything for more than 3 months.
sadest thing is that even if i buy vials (edaravone, mn166 ... etc), they will end in a trash. who needs it? can not even give it to someone. but i'll find a way to give it to someone who will need it. that is for sure, and i wont die before it ends in a hands who need it.
cheers!
i think that i should play loto!
 

Bestfriends14

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Hi Jethro,
I'm so sorry for your disappointment. If I may ask, how and where were you able to order Ibudilast from? It must have been very frustrating to have it at your hands but in control of customs. Why can't ALS patients decide for themselves on what to do with their own bodies? Sigh...
 

jethro

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i bought it via irc.bio. service is professional. not sure, but they are located in delaware. i paid in south african ZAR. i bought supply for 1 year, app 330 usd.
 

Bestfriends14

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Thanks, Jethro. Not sure if we'll give it a try but we will definitely check out the website.

Take care.

Joanna
 

Kristina1

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what is ibudalist? my neuro never mentioned that drug.
 

jethro

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@kristina, it would be miracle if he has heard about ibudilast, gm604 etc. they are butchers, not humanists, explorers...
dont expect doctor to help you! you can expect advice, but your decision is which way to chose.
once again: if i listened to my neuro&neurochirurgist, i will be criple for 22 years. all i got was pills (antiepileptic) and thats all. "after you run out of it, come for another dose".
i used it 3-4 and throw them away, together with all i got.
doctors can not do anything that you can with your als.
 

mbg1977

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all i got was pills (antiepileptic) and thats all. "after you run out of it, come for another dose".
.
why they prescribe you antiepileptics? which ones and why?:confused:
 

jethro

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@mbg1977 sorry, i mentioned that several times, but in some other posts. 21 years ago i had very bad accident. coma, trauma SAH, bad brain injury and i woke up blind, no speach, RIGHT side palsy. all doctors said was: we can not do anything. it's in a god's hands. all we can do is to give him pain killers and antiepileptics (tegretol) . doesnt anything to do with my als.

what is very interesting is: since 1996 i have dizziness which culminated in 2015. i thought it is anyhow connected with a car accident, right hand weakens, right leg weakens, just like than. never heard of als in 2015.
unfortunatelly...
 

Kristina1

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jethro im sorry that you have had such a bad experience with your doctor. I do feel I am in good hands at my als clinic though. They have put all available options on the table for me and gone to bat with insurance. they aren't perfect but i do trust their advice. looks like this clinical trial is not recruiting so id guess that's why it didnt come up.
 

jethro

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what is ibudalist? my neuro never mentioned that drug.
The exact way ibudilast works in ALS is unclear but it is known to block the action of enzymes called
phosphodiesterases (PDEs) and of a substance called macrophage migration inhibiting factor (MIF),
which are involved in regulating certain functions of brain cells. By blocking MIF and PDEs, the
medicine is expected to suppress the production of inflammatory molecules and to increase the
production of ‘protective’ molecules. In addition, ibudilast reduces activity of glial cells (a type of brain
cell thought to be involved in the development of ALS). Together, these actions are expected to
improve the symptoms of ALS.

European Medicines Agency - Human medicines - EU/3/16/1801
 
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