Tuesday, April 7, 2015

What I take for my interstitial cystitis

I've had a few people ask me on twitter what I take for my interstitial cystitis. So this post might be boring for those who regularly read my blog and don't have IC. Feel free to skip this post.

I am not a doctor so please do not start any medicine without checking with your doctor. Some of the meds I take are herbal but have been well studied with IC patients. Everyone has different reactions so if you do try anything listed here make sure you follow the directions and read the ingredients to make sure you are not allergic to anything in them. My doctors know all the meds I take including herbal.

This is what works for me after many years of trial and error. What works for one person may not work for someone else.

Prescription meds:

Ditropan XL - antispasmodic. Helps with frequency

Atarax - strong antihistamine. I only take this for really bad nights because it makes me so hungry.

Over the counter:

Claritin - for my allergies and my IC.

Nasalcrom - more allergy meds. This I take specifically for my IC and helps me a lot.

Zantac - for my stomach and reduces acid which is good for an IC bladder

Prelief - I take this before I have anything acidic. It lowers the amount of acid in food. I can drink beer and wine but tomato still bothers me even with prelief. I can have ketchup though!!!


Cystoprotek - I take 4 a day. I take it frozen because I have acid reflux and taking it frozen makes it easier on my stomach.

Freeze Dried Aloe from Desert Harvest - I currently take 9 a day but normally take six (three in the morning and three at night). I will be trying to reduce my dose soon as my last flare seems to have passed *runs through a forest and knocks on all the wood*

D-Mannose - Prevents and helps clear UTIs. I take it as needed if I feel like one is coming on. Do not get the kind with cranberry in it! Can be found at most drug stores or on Amazon.

I think the combination of the Cystoprotek and Aloe have been the key for me. It did not happen over night. I would say it took a good two years of slow improvement. If I'm having a flare I up my aloe hence why I'm taking 9 a day. You can actually take more than that if needed but it's not cheap.

I made the mistake of trying to lower my Cystoprotek dosage because of stomach issues and I had the worst flare I've had in years. I will not be doing that again.

Things I tried that didn't work for me:

Bladder distension and bladder instills aka DMSO treatment. I did instills at the doctors office once a week for about two months. They just didn't work for me and I smelled like an Italian restaurant (like garlic). It does work very well for some people.

Elmiron - the only prescription drug available specifically for IC. I was on it for about 7 months. I did not have side effects from it (my hair did not thin or fall out) but it didn't work for me. Cystoprotek works similar and that is why my doctor suggested that after Elmiron did not work.

Best of luck to all of us suffering. I hope one day there's a cure.


  1. Ooof, that's a lot of meds! I hadn't even heard of IC until I started reading your blog. It's amazing how many people walk around with "invisible" conditions. You really can never know what another person is going through unless you take the time to scratch the surface a little.

    1. When I type it all out it certainly looks like a long list. And that's very true. People can look completely healthy on the outside but that doesn't mean they are.