tumeric or curcumin

gpduffy

New member
Joined
Oct 25, 2020
Messages
7
Reason
Loved one DX
Diagnosis
10/2020
Country
UK
State
NI
City
Belfast
Hi - can anyone recommend tumeric or curcumin, or any other supplement to improve/retain mobility, and at what dosage?

My mum is currently taking a multi vitamin and vitamin D, I also read interesting articles about vitamin E.

Many thanks

Gerard
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,862
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
My clinic recommends theracurmin hP twice a day. The theory is it reduces inflammation. Many forms of ALS are inflammatory

is she taking riluzole? At the MNDA last week the doctor from King’s London said it slows ALS by 38 percent. I thought I misheard and asked at my clinic ( Mass General) she said yes it is true and the numbers you hear are based on the original studies in the 90s with a lot of end stage patients. She also said it works best taken as early as possible. Although I have always been a fan of Riluzole I had never heard this but both sources said there are multiple studies supporting this
 

gpduffy

New member
Joined
Oct 25, 2020
Messages
7
Reason
Loved one DX
Diagnosis
10/2020
Country
UK
State
NI
City
Belfast
Many thanks Nikki for the information.

Is theracurmin hP available from health care providers or do we purchase separate? I wonder would the following be suitable:
commercial link removed

Mum was diagnosed at the end of October and received Riluzole (50mg) within one week. We will try anything to ensure mum's condition does not deteriorate. Mum's also on statins, which I have major concerns about.
 
Last edited by a moderator:

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,862
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
It would be purchased separately. I get my theracurmin from US Amazon. It is 90 mg active ingredient per capsule What you posted looks similar but lower dose. The important part was that the formulation had increased bioavailability
 

richdees23

Active member
Forum Supporter
Joined
Apr 24, 2020
Messages
32
Reason
PALS
Diagnosis
02/2019
Country
US
State
NJ
City
FREEHOLD
i take riluzole (50mg/2x a day) and one turmeric/curcumin capsule a day. i used to take a theracurmin capsule but had difficulty
getting them on amazon. i've never had any side effects, but its difficult to measure any significant positive effects the supplement might have. i really can't say i've witnessed any physical improvements, but i have no reason to stop taking it.
 

lisa g

Distinguished member
Forum Supporter
Joined
Apr 17, 2019
Messages
298
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
20201215_101144.jpg This is the brand that is recommended by Dr. Bedlack of Duke
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,862
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Yes that is what mgh says too. I could not find the exact thing on amazon uk. That brand was something else on the UK site that looks similar but isn’t when I read the ingredients The op had ( in a link I had to remove) something that looks right but lower dose in a different brand

but in the US you should be able to find what Lisa posted ( unless they are out) thank you Lisa
 

kellysal

Member
Forum Supporter
Joined
Oct 26, 2020
Messages
15
Reason
PALS
Diagnosis
10/2020
Country
US
State
FL
City
West palm beach
MGH said Theracurmin HP. I ordered it yesterday. Is this the correct mg? It seem to be the only option and the document they gave me doesn't specify mg's. I'm interested in Supplements but its so confusing . MGH gave me 4 , Theracurim HP, Acetyl-L-Caritine, Tudca and L-Serine. Dr Bedlack has several others . Is it the combination? Is Dr. Bedlack the supplement specialist?
 
Last edited by a moderator:

richdees23

Active member
Forum Supporter
Joined
Apr 24, 2020
Messages
32
Reason
PALS
Diagnosis
02/2019
Country
US
State
NJ
City
FREEHOLD
i was taking the brand lisa posted. is it available on amazon us?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,862
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
What you ordered was right Kellysal ( commercial links not allowed). You should see the bioavailability in the description and on the label.

dr Bedlack does trials of supplements people say reversed or stabilized ALS to see if he can replicate results

mgh is really open to supplements and encourage the ones they believe in. The ones you have are targeting different mechanisms. I am sure they gave you handouts on how to wean up. I wouldn’t start everything together.

yes Rich I got what Lisa posted on amazon
 

kellysal

Member
Forum Supporter
Joined
Oct 26, 2020
Messages
15
Reason
PALS
Diagnosis
10/2020
Country
US
State
FL
City
West palm beach
Yes I just ordered it yesterday on amazon US
 

frankb

Senior member
Joined
Jun 8, 2011
Messages
566
Reason
PALS
Diagnosis
10/2010
Country
US
State
Georgia
City
Sandy Springs
i have been taking tudca for a couple of months but i like the idea of theracurmin. any advantage / disadvantage in taking both?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,862
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
they work on different pathways so that would be an advantage. As you can see Mass General doctors are recommending both together (and other things aswell).
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,087
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I've been taking it since onset and increased the dose after talking with Bedlack. I take the kind he recommends but there are others that are similar in bioavailability.

I would advise anyone taking Riluzole to take Tudca. It'll protect your liver. If you can't tolerate Tudca (always start low and work up) Milk Thistle has some of the same properties and might be easier on your stomach. I've tried Tudca three times and my stomach is tolerating it at a lower dose but not the recommended dose.
 

morleyde

Active member
Joined
Apr 4, 2018
Messages
35
Reason
DX UMND/PLS
Diagnosis
9/2017
Country
US
State
MO
City
Saint Charles
Kellysal,

What are the "several others" that Dr. Bedlack recommends?
 
Top