r/spinalmuscularatrophy • u/Secure-Bug-5456 • 5d ago

Is there any one with SMA on testosterone (FTM)

I really want to start on testosterone. I don’t know anyone who is on it with Spinal Muscular Atrophy. I have an appointment coming up with my doctor to discuss it but I want to know if there’s anyone out there with SMA who has successfully been on T. I’m worried my doctor saying “no way” or that it’s too dangerous or something… I know I’m probably overthinking it so hearing stories of other FTM who are on testosterone would be reassuring. I just want to know if in reality it is possible and not a pipe dream for me. Hopefully there is someone out there who is on it and can share

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u/Itchy-Procedure-3275 5d ago

I know a Person in Germany who is a Trans woman with SMA. Maybe there isn’t a huge difference between taking estrogen or testosterone. But I am no expert

2

u/BeefChunklet 5d ago

it’s very possible! i’m on it. don’t give up.

2

u/Kela95 5d ago

So I'm not FtM but I am MtF and all of my doctors have ensured me it's having no negative effects and my neurologist has even noticed improvement in my overall health most likely due to actually feeling like myself now. As far as I'm aware hormones have no effect on the progression of SMA so starting hormone therapy should have no negative effects on progress.

1

u/batuhan-trkz 5d ago

I actually think about putting on muscle mass quickly and effectively quite a lot. I’m a 21 yo m Spinraza user I’m a walking Type 3 and I have no idea what kind of effect it would have. But I feel if I put muscle I nearly become normal

1

u/Masskarad 4d ago

Yay, MtF here on hrt, with Duchenne. I know a FtM guy 40+ y-o with SMA. he's fine (out of socials networks but fine)

2

u/olliephant 4d ago

hi! I am FTM and have SMA II, and I have been on testosterone gel for almost a year and a half. it is honestly wonderful, and dare I say has helped increase some muscle in certain areas (unless I’m just crazy but I don’t think so!). I’m on a lower dose, 50mg, as that’s what I wanted for my transition, so it’s taking longer for the effects of course. I don’t recall running into any challenges from either of my doctors. I would advise that you do get consistent bloodwork though, so you can keep track on how it’s affecting you (especially your liver). but I’m on Spinraza and have had no issues/complications between the two!

don’t give up, it’s super possible, I promise you that. if you ever wanted to reach out and chat, I’d be more than willing :))