December 18, 2019 at 11:19 am #14046
The recent news that Ibudilast will help PALS early in the disease has made me consider purchasing Ibudilast overseas since it has been sold in Japan and Europe for some time. Does anyone have experience doing this and if so what has been the outcome? Thanks
December 19, 2019 at 3:32 pm #14063Martino CarettoParticipant
Hi. I am a PALS, onset in 2016,diagnosed in 17, now with feeding tube and on ventilator, male, 69 years old. I was ” prescribed ” Ibudilast about 5 months ago: I order it through ” The social medwork ” a Dutch company: they source it in Japan and have it delivered to my front door. Your doctor could write a letter to them stating that he/she recommends it for you. They will then help you ordering it.
December 20, 2019 at 10:12 am #14067
Hi Martino. After 5 months are you seeing improvement? Thanks
December 20, 2019 at 10:39 am #14069Martino CarettoParticipant
Well, the best hope would be to slow down progress, so I do not see an improvement and I cannot say what the progress would have been without it.
However progress on ALSFR scale has been 2 points in about 8 months.
I am also on Radicava and Riluzole.
In a nutshell, I cannot really answer your question with certitude. The neurologist recommended it and I complyed…
I would try anything that might help…
Bye for now.
December 24, 2019 at 10:36 am #14085Karen KyleParticipant
iT CAME QUICK. It depends if they have it. Had a prescription from my Dr. Now I have no problem with holding my head up.
March 10, 2021 at 12:44 am #17992
Dear Martin, Hi, hope everything goes well and your pALS to be stopped by these medicines, but my mother has Bullbar Palsy, and was on radicava but her neurologist does not let her take radicava anymore due to her respiratory weakness, she uses bipap, but as you mentioned you are on ventilator and use radicava, I wondered if with breathing weakness people can use radicava?
December 26, 2019 at 9:38 am #14094
Hi Karen. So it looks like Ibudilast has improved your symptoms, is that correct? How long have you been taking it? Thanks
December 28, 2019 at 3:57 am #14110Jens BussParticipant
Hi to all of you
I did the same, bought it from social medwork. But I take it for 10 days only, so no improvement yet. But starting from January I will combine it with TUDCA and Ammonaps. The idea is to copy AMX 0035. As you can see, I even try all what might be helpful. I’ll keep you updated if there is any improvement.
By the way, my name is Jens from Germany. I have been diagnosed with ALS since 18 months. I still can walk a couple of meters with actually no bulbar symptoms.
I am do my own trial, because my progress is too slow for being part of a official trial.
December 28, 2019 at 10:53 am #14111AmandaKeymaster
@Phillipjax, thank you for linking the websites. I have not had the opportunity to review them, but will ASAP. It is very important that pALS stay informed with data. Providing the links will help our members research!
February 25, 2020 at 3:29 pm #14622OwenParticipant
Hi all- I’d be interested in hearing an update on whether or not Ibudilast has helped at all. The Phase 3 trail has been pending for a while now.
I’d also be interested in hearing if anyone knows the dose and ratio AMX 0035 used between TUDCA and sodium phenylbutyrate (i.e. how many mg of TUDCA, how many mg of sod phenyl), and where you could buy sodium phenylbutyrate in the US online?
- This reply was modified 2 years, 2 months ago by Owen.
March 10, 2021 at 1:10 am #17993
Hi, I want to start giving TUDCA to my mother, a bit afraid of side effects, if there is no side effects I want to start it, can you help me on that?
March 10, 2021 at 10:39 am #17995Dagmar MunnKeymaster
I agree with Amanda. Please consult with your mother’s doctor first.
It’s easy for caregivers or family members to become impatient or enamored with the “latest treatment” in the news – – and want to take over medical management of their pALS – – from the doctor’s control. But your pALS’s doctor is the team leader and can see the big picture.
April 18, 2020 at 10:44 am #15134
I would also like to know how best to acquire Ammonaps in order to replicate the AMX 0035 trial. Is this by prescription and has there been any side effects?
May 2, 2020 at 3:55 pm #15221
is anybody take Tudca along with Riluzole and Radicava?
i see Tudca clinical trial excluding people take Radicava.
Appreciate your support with some insight, as My Brother Planning to take Tudca along with the current Radicava protocol
May 2, 2020 at 3:58 pm #15222
did you get some feedback from the forum on your question?
May 3, 2020 at 2:24 pm #15224Glen NorthParticipant
I tried both Radicava and Tudca. I continued to progress. I didn’t notice anything.
May 3, 2020 at 3:18 pm #15225
Many thanks Glen for your kind reply/
did you get both at the same time ? or one after the other ?
May 4, 2020 at 10:20 am #15242Glen NorthParticipant
May 6, 2020 at 10:16 am #15269EmmaParticipant
Greetings. I am 58 yo female with onset in my limbs August 2017. My formal diagnosis was May 22, 2018. I am currently on Riluzole and Ibudilast. I have been taking Riluzole since July 2018 and recently started taking Ibudilast. On Ibudilast for 7 weeks now and feel no difference. I felt I would try it as long as I had no bad side effects. The only thing I found is it’s easier on my stomach after I eat a meal. I take 10 pills/day (100mg) which is required dosage. Got the prescription from my doctor who put me in touch the a social network for coordinate the order,
May 7, 2020 at 4:36 pm #15281Romolo PalliniParticipant
I did a long Ibudilast trial at Mass General.
No issues , but did not see any real benefits.
and scans to my brain did show no reduction of inflammation.
trial was 9 months.
i was on both riluzole and Neudexta.
March 6, 2021 at 1:35 pm #17967Giselle VargasParticipant
Following up with those of you on Ibudilast? Are you still taking it? Seeing any benefits? Breathing any better?
I am also curious if anyone is taking BOTH ibudilast and sodium phenylbuterate.
( sounds like Ammonaps must be the European name for SPB )
Thank You in advance!
March 11, 2021 at 8:53 am #18003Ahmed YusufParticipant
You can learn everything about Ibudilast by studying the text at https://endals.altervista.org/#ibudilast .
Note the key statement near the end: “Within a subgroup of 34 Early-Stage patients, 11 (32%) experienced stable disease or improvement, which is an astonishing achievement if accurate. Each of the 11 is represented by a red line in the graph below, which comes from this very detailed 2018 trial report (a link to the report is given).
“After 3 elapsed months each of the 11 patients remained either stable (the line becomes horizontal) or improved (the line slopes upward). The remaining 22 patients (68% of the 34), represented by blue lines, continued to decline, but some less rapidly than others.”
If true, this is exceedingly important, because NO OTHER drug offers stability or improvement – all others attempt to REDUCE THE RATE of decline. So, Ibudilast may be hopeful, especially for those with early stage disease.
The Japanese pharmacy and the drug dosage are given. It would be risky to buy from Europe. Such a lengthy distribution trail (Japan to Europe to USA) offers too many opportunities for a counterfeit drug to be introduced. The Japanese pharmacy, which is linked in the article, is located in the same city as the manufacturer’s research center, making counterfeit substitution unlikely.
March 12, 2021 at 11:44 pm #18023
Dear Amanda/Dear Dagmar, Many thanks for your reply and kind comment, the doctor said better not to use it but not very strict this doctor just accepts approved medicines.
Thanks a lot
March 13, 2021 at 10:55 am #18024Ahmed YusufParticipant
Ali & Everyone,
Most physicians will not recommend drugs that are not FDA-approved, since such recommendations exposes them to lawsuits in this very litigious society. However, keep in mind that this is not a new drug. It has been used in Japan and other Asian countries for more than a decade as a neuroprotectant. And, Phase 3 trial participants are dosed at 100mg (10 capsules) per day.
In addition, it is important to point out that the “good news” on Ibudilast thus far is based solely on an early-disease subgroup of a completed Phase 2 trial.
The definitive verdict will be known upon the completion of the ongoing Phase 3 trial, which ends in late 2024, with a report available months thereafter.
Nevertheless, the Phase 2 results are hopeful for some. And, most cannot wait.
Finally, the Phase 3 trial is closed, and half of its 230 participants are receiving a placebo, unfortunate for them. But, you can “participate” informally in the trial and get the same experimental therapy, and (unlike trial participants) you don’t risk receiving a placebo for years..
PS: Do not take my word for it. Study the discussion at https://endals.altervista.org/#ibudilast, as well as the supporting documents linked there, and decide for yourself. After a few hours of study you will be able to make a decision.
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