Has anyone taken Sohonos 5mg Capsules for FOP? What's the experience like?

Did anyone experience any mood changes? I've heard that's a potential side effect, and I'm a bit worried about that.

I've heard that Sohonos can cause mood changes. I've been on other meds that did that to me. I'm thinking of going for it again with the Sohonos and see if maybe my doctor can do a regimen that isn't so bad.

I've been on Sohonos for about 6 months now, and it's been a game-changer. The abnormal bone growth has significantly slowed down, and I'm experiencing less pain. However, I did have some dry skin and a mild rash initially, but my doctor provided some great skincare tips to manage those side effects.

I started taking Sohonos a few weeks ago, and I've had some issues with dry mouth and upset stomach. Is there anything anyone recommends to help with that?

I think the biggest challenge I've faced is the skin irritation. It was quite uncomfortable at first, but with some careful management and a good skincare routine, it's much better now. I'd recommend using a gentle, fragrance-free moisturizer and avoiding harsh soaps.

I've personally not taken it but I've been following the clinical trials. Some of the participants have shown really impressive results with reduced bone growth. It's promising to see such progress in treating FOP.

Jk, no this won't turn you into a werewolf, but keep an eye out for those behavioral changes. If you notice anything, talk to your doctor immediately. This is nothing to play around with.

I've had to switch medications a few times because of allergies. I worry about taking something new but Sohonos has been a huge relief. My doctor was bracing for the worst and was surprised at how well I took to the drug.

I wish this was around when I was younger. I've had FOP my whole life and have gone through multiple surgeries. I'm curious if this would have helped back then, but I'm glad to see progress in treatment options.