sodium phenylbutyrate

holp

New member
Joined
Nov 27, 2020
Messages
1
Reason
PALS
Diagnosis
08/2020
Country
US
State
MI
City
Detroit
Hey, guys-

Anyone taking this expensive drug? Anyone found a way to get it at reasonable prices? If not for covid, I'd be looking into traveling overseas to acquire it -

sodium phenylbutyrate

my pals is taking tudca
 

Anjum nazir

Member
Joined
Dec 31, 2017
Messages
29
Reason
PALS
Diagnosis
07/2018
Country
IN
State
JK
City
Srinagar
No body has been successful in acquiring it and therefore we do not know how it works...hope somebody shares the experience....
 

Rae642

New member
Joined
Apr 5, 2015
Messages
2
Reason
PALS
Diagnosis
09/2014
Country
US
State
NY
City
Monroe
hi

I have been taking both prescription Tudca and Sodium Phenylbuterate since September. It is quite expensive, and I suffer from daily diarrhea.
the Tudca i order from Thesocialmedwork.com. They source medication approved in EU. A prescription and letter of intent from neurologist is required for customs.
The Sodium Phenylbuterate, also requires a prescription, and I get it shipped from Hopewell Pharmacy in NJ.
Both are 100% out of pocket, so I hope that the FDA approves Amx0035 quickly.
I am willing to suffer the digestive problems, because I have had positive results from the drug combination so far.
 

Samkl

Active member
Joined
Nov 1, 2019
Messages
85
Reason
Loved one DX
Diagnosis
08/2019
Country
AU
State
NS
City
Wollongong
Can you describe in what way positive, Rae?
 

Rae642

New member
Joined
Apr 5, 2015
Messages
2
Reason
PALS
Diagnosis
09/2014
Country
US
State
NY
City
Monroe
I am slowly progressing, but my last clinic I had noticeable improvement in the length of time I could exhale, over previous two clinics. Also what little shortness of breath I was experiencing, like on the stairs, has gone away.
I have limb onset, began in hands/arms, then moved to legs, then bulbar.
I have not noticed any difference in my limbs, positive or negative since beginning the new meds
 

Samkl

Active member
Joined
Nov 1, 2019
Messages
85
Reason
Loved one DX
Diagnosis
08/2019
Country
AU
State
NS
City
Wollongong
Many thanks for that. What dosage and frequency do you take of the two, Rae?
 

kellysal

Member
Forum Supporter
Joined
Oct 26, 2020
Messages
11
Reason
PALS
Diagnosis
10/2020
Country
US
State
FL
City
West palm beach
My Dr sent the prescription for Sodium Phenylbutyrate to The pharmacy and was sent to a specialty pharmacy. It was Miraculously approved by my insurance (copay 100.00) not to bad as I was told it could be 3.00- 8000.00. I was also told by my Dr. that they can send a prescription to a compounding pharmacy and have it made for 1000.00 out of pocket. I will start it this week with the Tudca
 

Samkl

Active member
Joined
Nov 1, 2019
Messages
85
Reason
Loved one DX
Diagnosis
08/2019
Country
AU
State
NS
City
Wollongong
Do you have to gradually up the dosage like the tudca? Unfortunately I bought for the PALS I know the 500mg tudca capsules when the advice seems to be start with 250mg. We’re in Australia, so I’m hoping another lot of 250 mg tudca I ordered will arrive soon from the US so he can start.
Kellysal, what are the specs for the sodium phenybutyrate you’ve been prescribed? Many thanks
 

kellysal

Member
Forum Supporter
Joined
Oct 26, 2020
Messages
11
Reason
PALS
Diagnosis
10/2020
Country
US
State
FL
City
West palm beach
My instructions say
Week 1
3g of sodium phenylbutyrate + 1 g Tudca

Week 4 on
3g of sodium phenylbutyrate + 1 g Tudca
Twice daily
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,620
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I heard on a webinar last night that phenylbutyrate is being approved more often ( though it seems hit or miss right now). The doctor also said that many insurances are updating their PA forms and soon there will be ones for ALS as well as the existing ones for its original indication. The down side is there are starting to be shortages due to the unexpected ( by the manufacturers) demand.

if anyone is getting approval ( especially by a medicare part d plan) will you share the company?
 

JlS85

New member
Joined
Oct 27, 2020
Messages
4
Reason
Loved one DX
Diagnosis
10/2020
Country
US
State
KS
City
Kansas City
We were able to get my husband's general practitioner to write a script for this (denied by 2 neurologists we asked). It took some work after initially being denied, but my insurance eventually approved it and is covering it with a $6 co-pay. My husband is not currently on Medicare and is on my company's insurance, Cigna.
 

lisa g

Distinguished member
Forum Supporter
Joined
Apr 17, 2019
Messages
245
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
JLS85,
That's very interesting on your coverage. My neurologist just sent in a prescription for sodium phenylbutyrate. I'm curious what process you followed once you were denied. My neuro said that they have an appeals letter that they've been having some luck with. I have Cigna also for my prescriptions. I'm just waiting to hear back from the pharmacy.
 

JlS85

New member
Joined
Oct 27, 2020
Messages
4
Reason
Loved one DX
Diagnosis
10/2020
Country
US
State
KS
City
Kansas City
Lisa g-
Honestly, we let my husband's GP, nurse, and pharmacy handle it for us. But from what I understood it was through an appeals process. Just a form they and the pharmacy had to fill out for us to get insurance to approve it. So it could be the same letter your neurologist was talking about. It took about a month to go through the appeals process before they approved it. We were so relieved! I hope it works for you too!
 

kellysal

Member
Forum Supporter
Joined
Oct 26, 2020
Messages
11
Reason
PALS
Diagnosis
10/2020
Country
US
State
FL
City
West palm beach
I was Approved by United healthcare
 
Top