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janet_gardner2026-04-18

I recently started taking Sohonos 2.5mg Capsules for my Fibrodysplasia Ossificans Progressiva (FOP). The medication has shown promising results in reducing the abnormal bone growth, but I'm concerned about the side effects, specifically itchiness and rash. Has anyone else experienced similar issues? Also, how do you manage the skin-related side effects? Any tips or advice would be greatly appreciated. I wonder if any experts on Reddit can weigh in on the risks vs. benefits of this medication. This is a rare condition, so it's hard to find reliable information on treatment options.

1 min read
last active 1d ago
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Comments (10)

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ethan_olson3d ago

I've had some pretty bad episodes of dry, scaly lips, so I've been using a lip balm with SPF to keep them moisturized. If you haven't tried it, I recommend it.

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kathryn_peters3d ago

Has anyone else had issues with depression while on Sohonos? I've been feeling really down lately and I'm not sure if it's the medication or just the condition in general. Any advice?

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peter_tucker3d ago

I literally just finished reading up on Sohonos. Does anyone know if it's safe to take with other medications? I'm on a few other meds and don't want to risk any interactions.

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gary_cox3d ago

Be careful with this stuff. I've heard horror stories about people experiencing severe allergic reactions. If you start feeling weird, don't wait it out—get help.

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ashley_alvarez3d ago

I've had both good and bad days with Sohonos. The rash is annoying, but it's manageable. I wish there were more resources out there for FOP patients. It's so rare that info is hard to come by.

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justin_robertson3d ago

Sohonos has been a lifesaver for me. The side effects are manageable, and the improvement in mobility has been worth it. I've had to adjust my skincare routine, but it's a small price to pay for the reduction in pain.

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dennis_jordan3d ago

I've been on Sohonos for a few months now, and while it's helped with the bone growth, the dry skin and hair loss have been tough to deal with. I started using a heavy-duty moisturizer and it really helped. Also, talk to your doctor about different hair care products that might help.

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beverly_spencer3d ago

I had such a bad reaction to Sohonos that I had to stop taking it. I experienced swelling in my arms and legs, and it was really scary. If you notice any of these serious symptoms, get to a doctor ASAP. It is not worth risking your health over.

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joan_kim3d ago

I wish I could just take regular medicine for this and not have to worry about all these side effects. Sohonos has been pretty rough on my skin, but it's definitely worth it. I just wish there were more treatments available for us.

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cheryl_vazquez2d ago

This is a great discussion. I'm new to Sohonos and I'm trying to see if it's worth the hype. Can someone explain the psychological effects in more detail? And how do the behavioral/mood changes manifest?