Thank you for visiting the ICN Support Forum. We are so happy that you found us! The ICN Support Forum is home to 50,000 patients who have participated in our 24/7 support system. However, to protect the privacy of our members, members of the public can not read posts unless you have registered first.
It's easy to register! Just click the "sign up" button in the upper right corner of the page. Make sure you use a correct email address because we'll send you an email to confirm that you are a real person!! We also screen all new applicants to verify that they aren't bots or spammers! If you have any problems, please feel free to send a quick email to: [email protected]ic-network.com!
Does anyone take florinef and if so does it bother the IC. My doctor wants to put me on it for low blood pressure because of CFS/FM. I`m also wondering if there is a good list somewhere of what meds and supplements irrate the IC?
Ok, I`m getting a complex here. This is the second question I have asked with not one reply. My feelings are hurt and I really need some imput. I feel like I`m invisible here or something.
Sorry Sandy,
I can't answer your question at all because I don't have low blood pressure but just wanted to let you know that you're not invisible. to ICN! I'm sure you'll get a reply if someone has been on that med.
Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
Medicines:
Claritin 10 mg/AM for MCAS and allergies
Synthroid
Aciphex 20 mg in PM for GERD
Zantac 75 mg, one at night for MCAS and GERD
Singulair 10 mg in AM, for MCAS & allergies
Zyrtec 5 mg/PM for MCAS and allergies
Non-Medicinal Helps:
glucosamine 500mg/MSM 500mg 2 X/day
I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.
I can do all things through Christ which strengtheneth me. (Phillipians 4:13)
Thanks for the welcome Octoberfarm. I appreciate it. I have Fm/CFs along with the IC and it gets hard to balance it all. I don`t know what I would do without these support boards.
Hi, I take .4 of florinef everyday and we are still trying to figure out what caused my most recent flare. Probably not the florinef but I am not sure. I would introduce it slowly, just take a tiny bit for a few days and see how you do. Good luck!!
Thanks for your reply. I still haven`t started it. I read somewhere that it pulls potassium out of your body. That ends up in the bladder and I think potassium is an irritant of IC. usually. So, I don`t know if I`m going to take this stuff or not.
Comment