February 28, 2020 at 2:17 pm #14655Dagmar MunnKeymaster
One of our forum members is asking about Ibudilast:
“I recently visited my ALS doctor and discussed taking Ibudilast (https://alsnewstoday.com/mn-166/) which is not FDA approved here in the US but available legally by mail from Holland and Japan. She said her patients that are taking it seem to have good results (not reversing, but slowing progress) with little negativity. My husband just recently inquired about getting it from Holland and they quoted him 760 euros which converts to $834 us dollars. Do you know of anyone taking this and does this dollar amount sound right?”
If any of our members have information, thoughts or suggestions on this – – please share them here. Thank you!
March 3, 2020 at 4:38 pm #14691LizParticipant
I would be very interested to hear if anyone has tried this
March 3, 2020 at 4:44 pm #14686Andy StrawParticipant
I don’t have answers to the specific questions. However, I see that a phase 2/3 clinical trial is planned, though not yet recruiting: https://clinicaltrials.gov/ct2/show/NCT04057898 even though it was announced almost a year ago: https://alsnewstoday.com/2019/04/17/fda-approves-pivotal-phase-2b-3-trial-ibudilast-als-patients/
March 4, 2020 at 12:20 pm #14717
I leave no too far from Mass General, and was on and Ibudilast “official” trial for 1 year.
I took 10 pills each day, and undergo 3 Brain scanning to verify if Brain inflammation would decrease.
Results: inconclusive. not only for me but for most people on the trial. I got the full (verbal) report from my MGH doctor.
Good news I had no side effects even if the dosage was massive (compared to what they use for MS treatment).
I know some people continued to take it, as they believed it helped.
I Korea , the doctors advice to take Ibudilast, again as they believe it helps.
in Summary, if you have the financial means, no arm in trying since side effects are (at the least for me) negligible.
unfortunately seems ALS reacts to treatments differently from person to person.
please contact me if you need further details.
all the best
March 5, 2020 at 3:35 pm #14735Martino CarettoParticipant
I have been on Ibudilast for about 6 months.I am 69 years old, diagnosed in June 2017, wheelchair bound, on ventilator and with PEG tube. I get it from Holland at the price mentioned in the question. Reliable service. Difficult to say if and how much helpful. I am also on Radicava, same conclusion, but I thought I would give a chance to anything that might help.
March 8, 2020 at 10:32 am #14745
I noticed that among the exclusion criteria for the ongoing Ibudilast trial is that the patients are not on injectable Vit. B12 or Nuedexta. Can you say if you were on these medications at any point before starting the trial ?
I am about to start inj. Vit. B12 and generic Nuedexta but I don’t know if I can then use Ibudilast at some point without having to discontinues the Vit.B12 and Nuedexta ?
Is it a question of toxicity why Ibudilast should not be used with these medications or is it, for the purpose of correctly interpreting the results of the study, they want to eliminate any potential improvement (confounding factors) from these other medications (and not incorrectly attribute them to the effect of the Ibudilast) ?
March 10, 2020 at 6:01 pm #14778
I was on Neudexta , but started b12 injections only after is stopped Ibudilast trial.
i hope this helps
ps: where is the Ibudilast trial? What is the dosage?
ibudilast seems very effective for MS treatment.
all the best
March 13, 2020 at 11:06 am #14815
Thanks for the information. It’s a MGH trial; I don’t think they are recruiting yet.
I am thinking of sourcing generic Edaravone from overseas. Do you know if it can be used on patients using Nuedexta and Vit. B12 injections ? Have you ever been on Edaravone ?
March 13, 2020 at 7:42 pm #14819
I did my trial at MGH too. Strange they start a new one, since mine was not successful.
i will send a mail to my doctor , she was the lead on my trial, and ask more info.
will let you know.
imwas on Neudexta, and oral B12. I started radicava just ad the end the trial, as recommended by my dr. So I assume radicava is allowed.
March 16, 2020 at 3:10 pm #14852
Thanks for the info. Romolo.
I am on generic Nuedexta and high dose injectable Vit. B12 (used to improve limb strength).
I think with the future Ibudilast trial they will have participants with onset of symptoms less than 18 months and who are not on Nuedexta, B12 nor Radicava.
I take it that in your trial, Ibudiladt didn’t have a significant positive effect ? What was your experience with Radicava and are you still taking it ?
March 17, 2020 at 3:59 pm #14865Ahmed HassanParticipant
is high dose of Vit. B12 help reducing ALS Progression?
My brother have a high Vit. B12 results already (with no injection)
he already on Radicava
March 17, 2020 at 5:25 pm #14869
I did post some details on March 4th (see above).
in short no efficacy has been proven on all the participants to the study.
the measurement was done by brain scans (3 in total), and no significant impact was noticeable.
giVen that, I will wait for other trials , as once you join a trial, you are precluded to partecipade in others.
I am on radicava, but honestly can’t tell if it helps.
March 18, 2020 at 9:40 pm #14884Dee HagenParticipant
I have a couple additional questions. What’s the dosage that you get from Europe and how long does the dosage (that costs 760 euros) last? Is it a monthly cost or other?
April 2, 2020 at 1:24 pm #15030
Hope that you are well.
Have you heard about how effective Perampanel (an anti-seizure medication) is in ALS patients ? There are ongoing trials (at at least three sites worldwide) trying to assess its effectiveness.
Perhaps persons around MGH may have some early news as to how things are progressing in testing the efficacy of this agent.
April 2, 2020 at 3:11 pm #15031
Monday morning i have a video call with mi MGH docty. I will check with her.
this is the first I heard of Parampanel .
will let you know.
May 6, 2020 at 12:07 pm #15271
The high dose B12 injections are given to attempt to improve limb strength primarily.
May 7, 2020 at 2:33 pm #15278Stacie FlemingParticipant
Hello – My husband has been taking ibudilast for close to a year now. He gets it through Europe as well for about the same price that was questioned. He also takes Riluzole and Neudexta, along with a cocktail of vitamins. The doctor prescribed a very large dosage – my husband takes 50ml less than prescribed because it was too much for his stomach at the full dosage. I am curious why the trial docs do not want patients also on Neudexta? Is it a safety issue? As far as whether it is slowing progression, it is really hard to say. My husband was 40 when he was diagnosed – 39 when he had his first symptom. He had an uncle who passed from ALS, but they have not found any known familial ALS genes.
Good luck to those looking to try it.
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