Old 04-19-2017, 04:00 PM #1 (permalink)
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Default Skyrocketing Alt/AST on Riluzole?

Long story short was screening for a trial. Everything good except for liver function so I'm rejected for a month and taken off riluzole. I rarely have a single drink and eat no processed foods.

Only changes in life as far as meds/food are:
Started riluzole 2/6/17
went gluten free 2/10/17

ALT (17-63 u/l)
ALT 2/14/17- 36
ALT 3/7/17- 41
ALT 4/13/17- 182

AST (15-41 u/l)
AST 2/14/17- 28
AST 3/7/17- 28
AST 4/13/17- 63

Has anyone else had huge spikes like this with Riluzole? I'm seeing a GP tomorrow but I have zero faith in a GP's knowledge of Riluzole, ALS, or anything outside of flu shots and z packs.

Thoughts?
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Old 04-19-2017, 04:08 PM #2 (permalink)
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Default Re: Skyrocketing Alt/AST on Riluzole?

Yes it happens to some. I don't think anyone can predict which person will have it if they seem healthy. I think the numbers usually go back down if you stop riluzole promptly as you did

I thought you were going to have a biopsy to rule in/ out celiac? What happened with that?
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Old 04-19-2017, 04:32 PM #3 (permalink)
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Default Re: Skyrocketing Alt/AST on Riluzole?

Biopsy was scheduled for may. Was trying to get into np001 so it was going to be canceled. I've been Gluten free 100% since feb just to be safe. My celiac blood test was through the roof so they said to go that route as a precaution period. Basically told me I'd have to go back on gluten for a month before the biopsy and I say heck no. After a month off of it I had a definate exposure and was sick as a dog for 3 days.
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Old 04-19-2017, 04:44 PM #4 (permalink)
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Default Re: Skyrocketing Alt/AST on Riluzole?

I don't blame you for not wanting to reexpose yourself to gluten but my understanding is that the biopsy may give a false negative if you are gluten free as the inflammation subsides with gluten free eating. What does your neuro say? Given all of this is there doubt about ALS? It would be so wonderful if you turned out to have a mimic!!!
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Old 04-19-2017, 05:28 PM #5 (permalink)
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Default Re: Skyrocketing Alt/AST on Riluzole?

Nope. Gene testing came back SOD1. We got all excited about the celiac as a mimic and then got the gene test back. Plus my father had ALS so I wasn't counting on a 1 in 3 mil mimic with family history. I knew I was hosed.

And yes it would have a false negative. I wasn't able to do the biopsy if I was enrolled in the trial so we just canned it along with me not wanting to get back on gluten. Neuro agreed.
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Old 04-19-2017, 05:31 PM #6 (permalink)
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Default Re: Skyrocketing Alt/AST on Riluzole?

So sorry. Are you looking into the sod1 gene blocking trial then? I know it is not at Duke but I have heard that they help with travel expenses.
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Old 04-19-2017, 06:27 PM #7 (permalink)
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Default Re: Skyrocketing Alt/AST on Riluzole?

The biogen trial is interesting and not too far from me *few hrs but its going to have the same restrictions if not more. With the high levels and coming off riluzole pretty sure no one is going to touch me for 30+ days. They aren't starting enrollment for that trial until sometime in May. I have the info but was more interested in the NP001 trial due to my high inflammation levels and it being local.

Going to see my GP tomorrow as a precaution on the high ALT/AST but removing the riluzole and will wait the month and reaccess the situation.

I did put some funny numbers together though. I was told only about 25% people are clearing CRP levels to get into NP001 which is oddly close to the original phase 2 findings of those who benefited from the treatment. Appears they have really narrowed this down.
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Old 04-19-2017, 07:33 PM #8 (permalink)
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Default Re: Skyrocketing Alt/AST on Riluzole?

I heard at my last clinic that the sod1 is going to have an open label extension after the trial. Meaning everyone in the sod1 arm will get the real thing after. just fyi.
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Old 04-19-2017, 08:12 PM #9 (permalink)
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Default Re: Skyrocketing Alt/AST on Riluzole?

Was that specifically for the biib biogen trial? I heard there's another aso trial gearing up too but haven't seen specifics. I do alot of work with biogen and hate to poke around but I might now.
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Old 04-19-2017, 08:29 PM #10 (permalink)
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Default Re: Skyrocketing Alt/AST on Riluzole?

Yes biogen. It was casual conversation as I am c9 not sod1 but the source was involved in the trial. They seemed optimistic about it though of course no results yet. I would be begging for this trial if I were sod1. I am jealous lol
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Old 04-20-2017, 06:09 AM #11 (permalink)
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Default Re: Skyrocketing Alt/AST on Riluzole?

Over NP001? I know the biogen is just a phase 1 trial and wasn't sure if it was worth writing off NP001 for since I did test positive for the high inflammation that showed so much success in a segment of the last trial.
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Old 04-20-2017, 06:32 AM #12 (permalink)
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Default Re: Skyrocketing Alt/AST on Riluzole?

if I had the choice yes. But I am not you. My reasons? Antisense aims to treat the cause. Everything else is treating effects. It has worked in lab animals and IPS cells. The same theory has worked for other diseases in humans. This is actually the second attempt. There was an initial trial about ?5 years ago. They did lower sod1 levels and nothing bad happened but they decided to reformulate it and this is the result.

But none of us have crystal balls and maybe NP001 is better for you. I hope whatever you choose it works well

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Old 04-20-2017, 11:13 AM #13 (permalink)
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Default Re: Skyrocketing Alt/AST on Riluzole?

I'm going to touch base with my neuro on it.

The real reason I was looking at NP001 was the outstanding results they had with high inflammation patients and and narrowing the patients that went into the trial. They've basically limited the enrolled base to meet the previous successes which is great. I was hearing that a very small % of people were able to get into the new trial and that % was very close to those who showed positive results in the original phase 2.

Maybe I just get scared on phase 1 trial designations but def something to think about. I'm off of anything for 30 days though since I got yanked off riluzole with the liver function. If I can get the levels down I am back in the ring.

Sadly I thought my progression had kicked into full gear and have been extremely weak and had stomach pain, etc.

2 days off riluzole and I already feel slightly better. Looking back my symptoms drastically accelerated upon starting it. I don't think its just mental either though. I woke up this morning and popped right out of bed which is normally a chore. Took my "take my pill" phone alarm going off to remember I was off of it so doubt its just placebo mental effect.
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