(f+s)ALS therapy??

Status
Not open for further replies.

jethro

Distinguished member
Joined
Nov 2, 2017
Messages
429
Reason
PALS
Diagnosis
09/2017
Country
HR
State
Croatia
City
ZAGREB
i described my problems in a post before, so i'm spread all over my "new" friend - gluckie (i call him debbie2).
i rewind my film - onset was at the same time, got somehow history of diabetesT2 in familly,
decided to take glycophage/metformin, bought yesterday,
by chance typed in youtube "metformin als" (everything i do/type i add als) and found:
just 454 views? since published (9 mnths)???by 5.5.21.


if so, ALS is a (just) condition, not disease
"motor neurons, which die, did not die".
again: mnd is not acronim for motor neuron DEATH, but DISEASE
i found this:
 
Last edited:

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,012
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
The preclinical for this was that metformin delayed onset in c9 mice No one even knows that this is particularly helpful in c9 PALS let alone others. Slowing or delaying something doesn’t mean it isn’t a disease but if you want you can call ALS a condition

anecdotally I have heard PALS in the trial say it doesn’t seem to help as well as c9 PALS who developed ALS while taking it. I tried to take it but it makes me sick
 

jethro

Distinguished member
Joined
Nov 2, 2017
Messages
429
Reason
PALS
Diagnosis
09/2017
Country
HR
State
Croatia
City
ZAGREB
when, how long and how many grams did you take/day?
i'll start as soon as i get it.
 
Last edited:

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
11,012
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I started at 250 and couldn’t take it. The extended release which comes in 500 to start I managed for 2 weeks. The goal dose was 2 grams a day divided which is what they study people took.
 

jethro

Distinguished member
Joined
Nov 2, 2017
Messages
429
Reason
PALS
Diagnosis
09/2017
Country
HR
State
Croatia
City
ZAGREB
trial is 6 months. just few drugs (i.e. antibiotics) can do something under 3 months. als is a condition which occured long before you can notice it. problem is that it has a spiral path, so when you're diagnozed, you'r 3/4 "there".
pals should be patient like crocodile. unfortunatelly, not everyone has that privilegy.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,532
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
My husband (SALS) was on daily metformin years before he developed ALS.

Just to be sure, you are taking Glucophage OR metformin, right? One is a brand, the other the generic.
 

jethro

Distinguished member
Joined
Nov 2, 2017
Messages
429
Reason
PALS
Diagnosis
09/2017
Country
HR
State
Croatia
City
ZAGREB
@igelb thanks laurie, this is very prescious info. there are many questions i have to ask. did you write about it? have no energy to investigate your 9700 posts... metformin or glukoxyz...? it is generic, don't know a name. today ill start with 500mg/day, today ill check my hba1c.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,532
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
If it is generic, it's metformin. The 2x/daily form may control glucose better than the 1x daily one.

My husband was diabetic pre-ALS as others have been -- don't think I've written anything else but feel to post or PM anything else I can answer. For any PALS that is diabetic, it is worth noting that at different stages of ALS, based on diet, exercise and weight, glucose control may wax and wane, suggesting adjustments of meds like metformin.
 
Status
Not open for further replies.
Top