Anyone taking Sohonos 1.5mg Capsules for Fibrodysplasia Ossificans Progressiva (FOP)? Share your experiences!
I've recently started taking Sohonos 1.5mg Capsules for Fibrodysplasia Ossificans Progressiva (FOP). I'm curious to know if anyone else is taking this medication and how it's working for them. The side effects list is quite long, and I'm hoping to hear about real-life experiences to better understand what to expect. I would also be happy to have a chat about how to manage these side effects. Feel free to share your thoughts if you're a caregiver or know someone who is affected. Let's build a support community together.
Anyone taking Sohonos 1.5mg Capsules for Fibrodysplasia Ossificans Progressiva (FOP)? Share your experiences!
I've recently started taking Sohonos 1.5mg Capsules for Fibrodysplasia Ossificans Progressiva (FOP). I'm curious to know if anyone else is taking this medication and how it's working for them. The side effects list is quite long, and I'm hoping to hear about real-life experiences to better understand what to expect. I would also be happy to have a chat about how to manage these side effects. Feel free to share your thoughts if you're a caregiver or know someone who is affected. Let's build a support community together.
Comments (9)
Has anyone experienced the behavioral changes? My sister started Sohonos a few weeks ago, and she's been a bit more irritable than usual. We're not sure if it's the medication or just the stress of the condition.
If you're experiencing any side effects, make sure to talk to your doctor immediately. They can adjust your dosage or switch you to a different medication if needed. It's important not to suffer in silence. Not all doctors are familiar with FOP, it's a rare disease but there are specialists out there.
I was scared to start this med because of the mood change side effects. I've been lucky so far and haven't experienced any of that. Fingers crossed it stays that way.
I'm on my third month of Sohonos and it's been a game-changer for me. The skin irritation was tough at first, but my dermatologist gave me some great tips to manage it. Just be patient and consistent with the skincare routine they suggest.
My pharmacy didn't have any Sohonos in stock and I've been waiting for over a month. I wish there was a way to get a refill more easily or a generic alternative. It's been tough, but hopefully, they get more in stock soon.
I started Sohonos last year, and I have to say, the joint pain has been pretty harsh. It feels like I'm constantly recovering from a workout I didn't do. Anyone else have this issue?
I've been on Sohonos for over a year now, and while it's not a cure, it's definitely slowed down the progression of my FOP. The dry eyes and mouth are annoying, but I manage them with over-the-counter drops and sprays. It's worth it to be able to move more freely.
I'm just glad there's finally a medication out there for FOP. For so long, it felt like there was nothing we could do. If you're hesitating, definitely give it a try, it feels good to finally feel like we have a shot at slowing this disease down.
I wish they had more info on long-term use. It's hard to find people who have been on it for more than a couple of years.