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kyle_palmer2026-04-17

I've been on Cystagon 150mg Capsules for a few years now to manage my nephropathic cystinosis. I've found it to be incredibly effective in slowing down the damage to my kidneys, but I'm curious to hear from others about their experiences with this medication. What side effects have you encountered, and how have you managed them? Have any of you had to deal with more serious side effects like fluid and electrolyte problems? I've had some mild issues with diarrhea and fatigue, but nothing too severe. Let's share our stories and support each other!

1 min read
last active 4/17/2026
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Comments (9)

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peter_tucker4/16/2026

I just started Cystagon a few months ago and it's been a bit rough. The nausea and vomiting are tough to deal with, but my doctor says it should get better with time.

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joyce_murray4/16/2026

I've noticed that Cystagon makes me really sleepy. Anyone else experience this? It's been tough to stay awake during the day.

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virginia_hughes4/16/2026

It's amazing how a tiny capsule can make such a big difference in our lives. It's not just about managing symptoms, but also about feeling more like ourselves again.

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grace_wilson4/16/2026

I joke that Cystagon is my 'cure-all' – it's not, but it does help a lot. Just keep an eye on those side effects and you should be alright.

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christopher_turner4/16/2026

I've been on Cystagon for about 5 years and it's been a lifesaver. I've had some weird side effects like changes in body odor, but nothing too serious.

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james_bradley4/16/2026

I've been lucky so far, just minor irritation in my eyes and nose. nothing too bad, but I hate the ear pain.

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james_morrison4/16/2026

Be careful with the electrolyte issues. I had severe dizziness and had to go to the hospital. Make sure to stay hydrated and monitor your electrolytes closely.

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sean_williams4/16/2026

I can't believe how expensive this medication is. It's a relief that it works, but the cost is insane. Does anyone know any programs to help with the cost?

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adam_owens4/16/2026

I had to stop taking Cystagon because of some severe skin problems. Has anyone else had similar issues? My doctor switched me to a different medication.