New to this - Interstitial Cystitis Network Support Forum

finale20 · 11-28-2009, 03:13 AM

I have suffered from IC for 4 plus years, and was in remission for a couple years. Now it is back with a vengeance. I feel like I am the only one suffering from this. I cannot take the medication because I become nausea. I just need a little support.

nottoc4 · 11-28-2009, 03:32 AM

Talk to you Dr. about bladder instills.They are not too uncomfortable and have really helped me. Hope you feel better soon. Jo

statesboro · 11-28-2009, 06:51 AM

I used to feel lost and as if I must be the only one. Of course, I was diagnosed back in 1997 while there was not as much information out about IC. Of course, I would still like more information being published. Regardless, I would figure it was Elmiron that had gotten you all nauseated. If so, I have never had problems with it. Anyway, remission must be nice. A cure would be even better. Ok. You are not alone now. I guess I should have given you a welcome by now. It sounds like you are not taking any medication now. I don't know, but the "IC diet" may help some. I am waiting on some Cystoprotek now. (ordered online) We do understand. You should hear from some others as well.

Glenda2 · 11-28-2009, 08:17 AM

Greetings and Welcome to the IC Board. A Great Place to Be.

I was diagnosed with IC on October 12th via a Cystoscopy.

Put on Elmiron. 100 mg's 3 times daily.

But it makes me Really sick.

Raw sore throat
Headache
Sinus pain
Stiff neck
Diarrhea
Minor hair loss.

After 13 days I had to stop taking it. On doctor's agreement.
Went and saw the doctor , he said Instills are the only other option.
I can't do Instills in the winter time due to my remote living location with too much snow.

So after being off it about 5 or 6 days I went back on it.
Took it for about 10 more days ( I forget ).

Then had to quit permanantly.

I am not taking anything for the IC , other then doing the Diet.

I do take Atarax (antihistamine) been on it 16 years. For itching.
Does nothing for my IC sadly.

Can't take the recommended Prelief because I take Protonix.

I do take the MSM-Glucosamine . No results yet.

Waiting for the Aloe Vera to arrive. Tried the samples , but 6 capsules isn't enough to make a difference I guess.

I hope you can get some help soon for your IC.
This is a miserable illness to live with.
I feel like hell all the time.