AUA 2016 Report on CyA- did I read this correctly!?

[MissM]

Hi All,

Here is the article I found:

http://www.urotoday.com/conference-p...-outcomes.html

Did they say that those With Hunners Ulcers Did not respond? I feel like I've read both sides regarding CyA, we need so much more research and trials on this!!

[ceera1231]

Re: AUA 2016 Report on CyA- did I read this correctly!?

I have read a lot of these since being diagnosed. Here is what i gathered from reading it. I am not a scientist.


Aim was to assess effect of drug on patients with IC. Patients used in study had to fail 2 classes of therapy. Patients were treated with Cyclosporine starting at 3 mg/kg divided twice a day and assessed monthly for 3 months to determine therapy. How they measured their symptoms was with the IC GRA assessment. (The assessment asks: “As compared to when you started the study [treatment], how would you rate your interstitial cystitis symptoms now?” The seven point scale is centered at zero (no change): markedly worse; moderately worse; slightly worse; no change; slightly improved; moderately improved; and markedly improved.) Of those who were in the study, 7 patients (27%) had Hunner’s ulcers and 9 patients (34.6%) were on chronic narcotics.

At the 3 month primary endpoint, 52.4% of patients were improved according to the GRA scale mentioned earlier and 38.1% had over 30% improvement according to the GRA scale. The authors concluded that based on several different parameters Cyclosporine can be effective therapy for patients with longstanding recalcitrant IC who had failed multiple prior treatments. This drug can also be successful in patients on chronic narcotics. Patients with Hunner’s ulcers were unlikely to respond to the drug.

I wish I knew what they meant by the last two sentences. I feel this could be just coincidental.

[MissM]

Re: AUA 2016 Report on CyA- did I read this correctly!?

I have read a lot of these since being diagnosed. Here is what i gathered from reading it. I am not a scientist.


Aim was to assess effect of drug on patients with IC. Patients used in study had to fail 2 classes of therapy. Patients were treated with Cyclosporine starting at 3 mg/kg divided twice a day and assessed monthly for 3 months to determine therapy. How they measured their symptoms was with the IC GRA assessment. (The assessment asks: “As compared to when you started the study [treatment], how would you rate your interstitial cystitis symptoms now?” The seven point scale is centered at zero (no change): markedly worse; moderately worse; slightly worse; no change; slightly improved; moderately improved; and markedly improved.) Of those who were in the study, 7 patients (27%) had Hunner’s ulcers and 9 patients (34.6%) were on chronic narcotics.

At the 3 month primary endpoint, 52.4% of patients were improved according to the GRA scale mentioned earlier and 38.1% had over 30% improvement according to the GRA scale. The authors concluded that based on several different parameters Cyclosporine can be effective therapy for patients with longstanding recalcitrant IC who had failed multiple prior treatments. This drug can also be successful in patients on chronic narcotics. Patients with Hunner’s ulcers were unlikely to respond to the drug.

I wish I knew what they meant by the last two sentences. I feel this could be just coincidental.

You're awesome thank you! I got most of it, but I've heard both it helps those with ulcers but then it doesn't. I REALLY wish doctors would do a large trial on this, it sounds like it could really help people who have exhausted all options. I might be trying this soon, I'll update y'all if I do!

[ceera1231]

Re: AUA 2016 Report on CyA- did I read this correctly!?

No problem. I am going to bring it up to my dr too at my next meeting. I am desperate at this point. I have read many people say it helps, but they side effects suck. I could deal with almost any side effect besides cancer or organ damage obviously haha idk what can be worse than this

[MissM]

Re: AUA 2016 Report on CyA- did I read this correctly!?

No problem. I am going to bring it up to my dr too at my next meeting. I am desperate at this point. I have read many people say it helps, but they side effects suck. I could deal with almost any side effect besides cancer or organ damage obviously haha idk what can be worse than this

Lol I feel the same way! anything is better than this! Lol

[MissM]

Re: AUA 2016 Report on CyA- did I read this correctly!?

No problem. I am going to bring it up to my dr too at my next meeting. I am desperate at this point. I have read many people say it helps, but they side effects suck. I could deal with almost any side effect besides cancer or organ damage obviously haha idk what can be worse than this

So I got my blood work results, came back ok. So now I have to go to a rheumatologist to have my symptoms assessed because I guess you can diagnose SS based on symptoms and biopsy, I guess negative blood work is common for Sjogrens. I am so freakin annoyed. So I asked my Urologust when I could just try the CyA, waiting on his response. Is nothing ever easy for me!? Only an IC patient would want a positive ANA result! Lol

[Mariamagnolia]

Re: AUA 2016 Report on CyA- did I read this correctly!?

I will be starting cyclosporine within a few weeks. Did any of you try this treatment? Curious to know the outcome - the clinical trials look really positive...
Maria