Sodium phenylbutyrate powder

[James Bonner]

How are you taking it?

[Kim]

I am taking it in Canada and pay $3000/ month.

[Patti]

Sodium phenylbutyrate is considered a Tier 5 drug – one with the highest copay.
BCBS losts Tier definitions here: https://www.bcbsm.com/index/health-insurance-help/faqs/plan-types/pharmacy/read-drug-list.html

Most drug plans follow Medicare and the same process usually applies to Medicare Part D and private plans. From https://www.bcbsm.com/index/health-insurance-help/faqs/plan-types/pharmacy/read-drug-list.html:

<h2>Request a formulary exception</h2>
<p class=”swift-in-viewport”>If you or your physician believe that the non-covered medication would be the most effective for treating your condition, the next thing you can do is to request a formulary exception. A formulary is a list of prescription drugs covered by the Medicare plan. Every Medicare Prescription Drug Plan and Medicare Advantage Prescription Drug plan has one, although the specific medications included by each plan’s formulary will vary. Formularies may change at any time; you’ll be notified by your Medicare plan if necessary.</p>
<p class=”swift-in-viewport”>A formulary exception can be granted if your doctor and/or Medicare plan determines that the prescription drug you requested is medically necessary for your health, so you will need a written statement from your doctor or health-care provider to support your case. (In some cases, your doctor can also make an oral statement to your Medicare Prescription Drug Plan or Medicare Advantage Prescription Drug plan.) Once your Medicare plan has received the statement from the prescribing physician, it will make a determination whether or not to cover the non-formulary medication. For a standard formulary exception request, your plan will make its decision and notify you within 72 hours of receiving the prescribing doctor’s statement.
If waiting 72 hours for a decision could endanger your health, you also have the right to ask for an expedited formulary exception request. If you submit an expedited request, your Medicare plan must respond within 24 hours with its decision.</p>

[Richard]

I take  this in a liquid form for $550 a month. Capsules cost $720 a month. It is available at  compound pharmacy.

<span class=”meddata”>Hopewell Pharmacy | 1 West Broad Street Hopewell, NJ 08525 | 609-466-1960</span>
<div class=”medinfo”><span class=”meddata”>1 West Broad Street, Hopewell NJ 08525</span></div>

[Nina]

Has there been a trial on this compound? Does it have good results?

[Richard]

I have an RX from my neurologist for this. I also take 1500mg Tudca. Both of these are the medications in AMX 0035 although the actual medicine from Amylyx Pharm in their clinical trial is a quality control blend vs these raw supplements. The Phase 2 clinical trial showed good results in slowing progression and there is hope it will be FDA approved in early/mid 2022.

<span class=”ILfuVd”><span class=”hgKElc”><span class=”kX21rb ZYHQ7e”>Sep 23, 2021 </span>The ALS Association is applauding the recent change of heart by the U.S. Food and Drug Administration (FDA) to consider AMX0035’s <b>approval for amyotrophic lateral sclerosis</b> (ALS) without requiring results from an additional clinical trial.</span></span>

[Mike Minardi]

Can’t tell your daily dosage from the message. My wife is taking the combination of sodium phenylbutyrate and tudca as mentioned in another post. Her SP dosage is 6 grams / day (12 500mg capsules which we dissolve in water and give through G-tube) plus 2G of Tudca (4 500 mg capsules per day).

We source the SP capsules from Johnson Compounding Pharmacy in Waltham, MA. They are an outstanding compounding pharmacy and they are licensed in Illinois which is where we live.

1000 500 mg capsules, we currently pay $1450. If you are dosing 6g / day like my wife, then I think you are getting a very good price. If you need more information, please send me a private message.

[Karl Schachtner]

I also take it in a liquid form. It comes in a liquid suspension with Tudca, which is supplied to me by a compounding pharmacy, WellPack Pharmacy in Tallahassee, Florida, for $550. per month.
Funny thing about this. I was warned that it would be very, very bad tasting. But I had no idea that something could taste so bad! I gagged on it and immediately spit it out, no way I could swallow, plus it sticks in your mouth. I take it through my feeding tube. If I didn’t have the tube, I don’t think I could take it.

[Eric Kentor]

It appears to me that you are getting it at a good price.  I had planned to start it several months ago, but then became eligible to enroll in the HEALEY clinical trial (Regimen D), so I set it aside.  I had purchased a one month supply for about $1,000.

For anyone out there taking sodium phenylbutyrate + TUDCA, how have you responded to the combo therapy?

Good luck to you all.

[Chris Spott]

Can anyone guide me on  how to find Sodium phenybutyrate at these cheap prices.  I havent been able to track down anything under $5,000 for my prescription (3g 2x daily)?  Needless to say I have not been taking it.

[Richard]

The below link to Hopewell Pharmacy in NJ fills my RX at $550 for a months supply. Two pint bottles with a measuring syringe to take twice a day. Can buy Tudca on line at Double Wood Supplements.

[Eric Kentor]

Several months ago, I was referred to a compounding mail order pharmacy in New Jersey.  The initial dose I was prescribed came to $1,050/month (though it may be a lower dose than your current one).  I did not follow up after the first prescription because I enrolled in the HEALEY trial instead.  The pharmacy is Hopewell, and I included below what I think is their website.  Good luck.

 

https://www.hopewellrx.com/

[Bill]

I hope the phase 3 trial shows better results than the phase 2. The results were similar to Riluzole (or less) depending on different Riluzole numbers. Highly hyped in Amylyx investor releases. Some people misunderstand what significant means in a drug study data. It means a significant correlation showing with results. It does not mean necessarily a significant improvement.
Post should also be asking what results this mix is bringing.

[Chris Spott]

True.  And given that ALS effects everyone differently how are these “results” measured is interesting.  I read through the various test results on Riluzole and Radicava before taking both.  The results seem pretty circumstantial at best yet they were approved by the FDA.  In the end, my insurance was covering it so I thought I would take it with nothing to loose.  I have been on both for a year and have continued to progress.  Slower? Who’s to say?

[Len Sansoucy]

My neurologist wrote me a prescription for the sfb and I buy the 500 mg Tudca capsules on line. I was pleasantly surprised that my insurance ok’d it. Presently getting an 85 day supply of sfb for just a $25 dollar insurance copay. I keep expecting my insurance to balk at the cost but I’m on my third refill now and just keeping my fingers crossed.

[Bill]

Glad to hear that Len I know of another whose insurance covered also. It would be worthwhile for people to check.