Chlorpactin Anyone?

[Vicki]

I know this is a controversial treatment but it is the only thing other than silver nitrate that I have not tried. It was suggested to me by the doctor that originally diagnosed me. I declined it and switched doctors. I am at the point where I am desperate enough to try anything. I have had almost eleven years of this crap. My only other choice is bladder removal. I am only36, about to be 37. I want to have some quality of life. Right now I am only existing.
I know there was a guy who gave an on-line interview about it within the last year or so. He said to many docs use the stuff at .4% strength which is too high and that's why it got a bad rap. He suggests. .1% for the first treatment and .2% after that. I have an appointment in about a week and I am going to ask for it. -Vicki

[ICLori]

I'm with you, I would try every possible treatment in the book before giving up. That's why I'm going to go ahead and try Cyclosporine-A in a couple of weeks - the studies show a 75% or higher remission rate from IC on it, and the side effects didn't look too bad. Only two people in one study developed mild hypertension, and that resolved when they lowered the dose, so that doesn't sound too terribly bad, I'm willing to take a chance if there is a good chance I'll go into remission on it, you know?

Good luck with the chlorpactin, I understand 100% about wanting to never give up, always trying a new thing in case it gives you your life back. Hopefully this will work for you!

Blessings,
Lori

[Mrs. Burschman]

I'd try it too. Especially at the lower dose. I've heard of people getting a lot of relief from it.

Amy (Mrs. B) :bunny:

[Vicki]

Lori- Are you in a trial for Cyclosporine? I don't there is a doctor here in Arkansas that is using it for a treatment. Do they use Methotrexate with it? I know they use that for Lupous patients and somewhere I read about it being used for IC with good results. -Vicki

[ICLori]

Hi, Vicki, I'm not in a trial for Cyclosporine-A. Actually, I just showed my doctor a few of the studies showing that Cyclosporine-A is by far the most effective treatment to date for IC, and it is both safe and effective. (The recent studies showing this is part of the reason so many people are coming to the boards these days saying their doctor wants them to go on Cyclosporine-A.)

So when he saw the studies (if you do a search on the boards for Cyclosporine-A you will see the studies too and can print them off to show your doctor) he agreed (after making sure I was healthy enough by doing blood tests) to let me try Cyclosporine-A. I will have to go in for weekly blood tests so they can make sure my kidneys are not being harmed by the Cyclosporine-A. Not sure if I have to continue those tests for a long time or just for a month or so until they see how my body reacts to the medicine.

I plan to make an appointment in a couple of weeks to go in and pick up the prescription. I should know within a month or two of starting it, if it will help me or not. Generally people don't see any results until about four weeks of taking it.

Methotrexate is another drug used in autoimmune conditions such as lupus which has shown mixed results with IC. I am only going to be using Cyclosporine-A by itself for treatment for my IC because the studies that were done showing it to be effective, had only Cyclosporine-A being used.

Blessings,
Lori

[ICLori]

P.S. Here is one of the studies...this one came out just a few months ago, in December....this is one of the studies that helped convince my doctor to let me try Cyclosporine-A...

Pentosan polysulfate sodium is Elmiron, BTW.


@@@@@@@@@@@@@@@@@
Cyclosporine A and pentosan polysulfate sodium for the treatment of interstitial cystitis: a randomized comparative study.

Sairanen J, Tammela TL, Leppilahti M, Multanen M, Paananen I, Lehtoranta K, Ruutu M.

Department of Urology, Helsinki University Hospital, 00029 HUS, Helsinki, Finland. jukka.sairanen@hus.fi

PURPOSE: In a previous retrospective analysis, cyclosporine A (CyA) was highly efficient in treating patients with interstitial cystitis. A prospective randomized study with this immunosuppressive agent was warranted. We compared CyA to pentosan polysulfate sodium (PPS) in patients with interstitial cystitis.

MATERIALS AND METHODS: A total of 64 patients with interstitial cystitis meeting the National Institute of Diabetes and Digestive and Kidney Diseases criteria were enrolled in a randomized prospective study. Patients were randomized in a 1:1 ratio to 1.5 mg/kg CyA twice daily (27 women, 5 men) or 100 mg PPS 3 times daily (26 women, 6 men) for a period of 6 months. The primary end point was daily micturition frequency, and secondary end points were mean and maximal voided volume, number of nocturia episodes, O'Leary-Sant symptom and problem indexes, visual analogue scale for pain, and subjective global response assessment.

RESULTS: CyA was superior to PPS in all clinical outcome parameters measured at 6 months. Micturition frequency in 24 hours was significantly reduced in the CyA arm compared to the PPS arm (-6.7 +/- 4.7 vs -2.0 +/- 5.1 times). The clinical response rate (according to global response assessment) was 75% for CyA compared to 19% for PPS (p <0.001). Although there were more adverse events in the CyA arm than in the PPS arm, 29 patients completed the 6-month followup in both groups.

CONCLUSIONS: CyA is more effective than PPS in interstitial cystitis.
Publication Types:
Randomized Controlled Trial

[icsonja]

XXXXXXXXXXXXXX That is me crossing my fingers, toes, eyes and any other body part that will cross to wish you the BEST with your new treatments, both of you !!!
I am following right behind of you, in the "tried it all and looking for more" group so I will be praying for both of you to do great not just so that it will give me tje push to try another treatment, but because I really do care how you do.
ICers are amazingly strong women (and men), you all make us proud!!
Sonja:kiss:

[ICLori]

Thank you, sweetie, I hope we all find our miracle drug or treatment soon.

I don't have your e-mail anymore, please e-mail me, my address is: ILUVHIMMIES@aol.com.

I'm so sorry for what you've been going through - when it rains, it pours...I'm keeping you in my prayers.

Blessings,
Lori