Based on these results oral trehalose might be better than IV:
prd-journal.com/article/S13...
The trial: clinicaltrials.gov/ct2/show...
Trial “extension”: clinicaltrials.gov/ct2/show...
Bioblast did a IV trial a few years back:
clinicaltrials.gov/ct2/show...
The results of this trial:
globenewswire.com/news-rele...
Maybe the authors of this are onto something:
There used to be a man in this group, Sunvox who frequently extolled the virtues of Trehalose. I bought some. When it arrived it was tiny and would have lasted 3 days! It was far too expensive for us to realistically pursue. If you can afford it, rock on, but I suspect most folk aren't in that position. Interesting to see someone else who is equally as evangelical about it, but I'll wait and see if in time it becomes proven and/or more affordable.
Sorry to hear that. But maybe you just picked the wrong supplier?
I think most people living in the EU will be able to afford 1-2 euro/day.
formmed-shop.de/inhaltsstof...
I wish you all the best.
My husband has been using trehalose instead of usual sugar in his coffee for ages thanks to the information shared previously by Sunvox (Joe). Works out £16 a bag and lasts about 6 weeks. Who knows if it helps but certainly is not harming!
"This suggests that the clinical effects of trehalose were more robust when given earlier, in patients with minimal disability, irrespective of their trinucleotide repeats."
Thank you for sharing that. The link wasn't working for me, but I found the paper so I thought I would repost the link. Too bad it only studied SCA3 and used 15 people. The clinical trial will be interesting, but it is only planning to enroll 40 people, still not many, and it will be 2022 before there are results. Also interesting the study is in Malaysia. It seems western medicine is not interested in a simple sugar.
Efficacy of Oral Trehalose in Spinocerebellar Ataxia 3
clinicaltrials.gov/ct2/show...
Oral trehalose maybe helpful for patients with spinocerebellar ataxia 3
prd-journal.com/article/S13...
Also interesting the study administered 100g per day. That's a lot of extra calories so one would need to adjust their diet accordingly so as not to gain weight, and it would make the cost £1.1 per day IF one were to try it:
Sorry for the incomplete links - and thank you CardiCorgi for helping out👍
Those are the links meant to be posted:
prd-journal.com/article/S13...
Bottom Line
Trehalose is a sugar compound found in several bacteria, fungi and plants. It is the source of energy and moisture for cellular membranes, but humans usually use it as a healthy alternative to table sugar. Trehalose powder may have a number of benefits, including the potential to support cognitive function, reduce oxidative stress with its antioxidant properties, hydrate the skin and eyes and provide protection from the sun. One of its most important mechanisms is inducing autophagy, a process the body uses to get rid of damaged or unnecessary cells that may cause disease.
While trehalose may have its benefits, it can also cause side effects, such as gastrointestinal issues. Some people may experience an intolerance to it because of a trehalase deficiency, which prevents the body from metabolizing trehalose. There is also research that associates it to a bacterium called C. diff, which causes severe digestive symptoms.
Overall, trehalose has been deemed safe overall by the FDA, but it is still important to speak with your physician to make sure this supplement is the right one for you.
Copied from community.bulksupplements.com
My attempts at managing SCA3
Partial Possible Treatment for some SCAs.
