Life with Procysbi 75mg: Managing Nephropathic Cystinosis

I've had this for years and the doctors always say it’s normal for such a strong medication. I'm just happy it's actually working!

I've been on Procysbi for a while and the side effects have been manageable. The main one I’ve noticed is the tiredness. I just make sure to rest when I need to. I really like how it’s improved my overall health though! The medicated has helped me avoid dialysis.

I've been on Procysbi for a couple of years now, and while it's not a walk in the park, it's been a game-changer for my kidney health. The initial side effects were tough, but they eased off after a few months. Try taking it with food and plenty of water. Also, talk to your doctor about adjusting the dose if it's too harsh on your stomach.

The severe dizziness and eye pain are the worst, but I guess that’s the trade-off for keeping my kidneys healthy. I'm happy with it overall. Just try not to panic, it's an annoying process, but it helps.

I'm just about to start on Procysbi. I'm really nervous because I've heard about some of the side effects. What causes the most issues for you?

I actually find the change in body odor the worst. It's not life-threatening, but it's definitely weird. And Procybsi’s bad breath is awful.

I've had some experience with black, tarry stools. It's a bit scary, but I've read that it can happen with some medications and though awful, should only last about a week or so. It’s worth talking to your doctor about it, of course, but it might be normal.

I've heard some horror stories about the skin problems but I have to say I've been lucky. I've only had a few stretch marks and some joint pain, but it’s a small price to pay for feeling healthier.

I've actually heard good things about this medication. My cousin and a few friends have all said it’s been helpful, just annoying to deal with at first.

I've been on Procysbi for about 6 months now, and the biggest issue for me has been the dizziness. It's not constant, but when it hits, it's bad. I've found that lying down and resting helps it pass. It’s the worst after a walk so try taking it easy for a few days to see if that helps. Also, make sure to stay hydrated; it can make a big difference. I've also noticed that my body odor has changed a bit, but that's the least of my worries.