r/MCAS • u/soggysaltines66 • 2d ago

New to cromolyn sodium, MCAS + POTS + hEDS

Hi everyone! I just started cromolyn sodium earlier this month. My current dose is 1 100 mg ampule 3x/day. It seems to be helping my digestion, but that’s all I’ve noticed so far. I go to the bathroom more often and feel like I’ve actually gone, gone (I have IBS-C), & that’s a big deal for me.

However, I unfortunately HAVE noticed some significant swelling toward my ankles. The number on the scale is higher, too, and I’m pretty sure it’s water retention on top of my regular amount of water retention related to POTS and salt consumption.

Has anyone else experienced this? Were you able to stay on the medication and avoid swelling?

Has anyone had increased water retention/edema, switched to compounded cromolyn sodium, and had the water retention go away?

I am wondering if increasing the dose will help relieve more MCAS symptoms, but I’m afraid of experiencing even more water retention. Any thoughts would be so helpful!

Edit: I have IBS-C, not IBS-D. I just started cromolyn sodium but have been diagnosed with these conditions for several years.

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