Dutasteride and ALS

[Vivienne47]

Hi Marie. In the Uk dutasteride is available via a commercial site . Link removed] but they ask for permission to contact GP before selling and don't sell to women (it is dangerous if you are of childbearing age or have anyone in the house who is). I am getting it though a young male friend who has ALS. It is very affordable, £84 for 180 capsules. I tried Proleukin which was very expensive ~£1,000 per month.

 

[Nikki J]

You are all free to pursue whatever you wish. I will again point out this is written by a PhD candidate in health sciences and is pure theorizing. No lab research at all in ALS - not test tubes not mice not zebrafish nothing.

Vivienne we have a FALS section. There are specific c9 groups on facebook if you want to join. I do not currently belong to any but know they exist.

 

[Smjacobsdmd]

I have been on dutasteride for about 15 months as well as the three Rs. I am probably an average progressive but it goes somewhat in spurts. Recently started high dose sublingual B12 that seems to be increasing my energy.

 

[Marieb425]

Smjacobssmd - thank you for the info! We confirmed with my husband’s neurologist and PCP and they see no harm in trying this out. The only issue is that he can’t swallow any medication and it’s a capsule so I put gloves on and was trying to squeeze the liquid out so I could put it in his feeding tube. How do you take yours? Are you able to swallow it? I’m wondering if I can get a tablet form that can be crushed. Feel free to send me a message if you prefer. My husband has been fast progressing (in my opinion). Thanks!

 

[lgelb]

Marie, please don't do that. There is a strong warning against opening the capsules, let alone tube use. The capsules are designed around safe dosing with a gradual release of a measured amount of drug. He and/or you could be seriously harmed. For example, this drug even in regular predictable dosing carries an increased risk of dizziness and trouble breathing.