Announcement

Collapse
No announcement yet.

AUA 2007 - Cyclosporine Shows Promising Results for IC in Brazil study

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • marsi4
    replied
    Cyclosporine

    Hi Hdb1982,

    I appreciate you sharing this important information. I myself would never take such a med. You are not being negative or being what you referred yourself as. This med has serious side effects. Suppressing the immune system can cause many other health issues. I would rather have a cystectomy than alter the way my immune system functions. The benefits to me are not worth the dagerous risks. Most doctors are sensible when prescribing this med and will not prescribe it for ic.

    Marsi4

    Leave a comment:


  • hdb1982
    replied
    This drug caused my 18 year old cousin cancer after a kidb=ney transplant. The cancer ate his vocal cords and at 21 he can no longer speak. I know these effects are rare but knowing someone eho experienced them first hand is ehough for me to stay away from it. Hopefully it will help some. I just realized I am being very negative today. Sorry about that. My hormones are crazy. Can't wait until Monday when I can take a pregnancy test. Hopefully I will get a positive and have a legit excuse for being a b**** these past few days. Anyway sorry about that. Don't hesitate to tell me I am being a b*&** and smack me out of my own little world.

    Leave a comment:


  • Igottabooboo
    replied
    I've taken cyclosporine for dry eye as well as peristomal ulcers.
    For the ulcers the brand name is Neoral. And let me warn you. . .this stuff can give you some pretty nasty side effects. While using this medication, you have to have your liver and kidney functions tested every 2 weeks. (This med started affecting my liver). I recall getting really sick from this stuff one night. I couldn't even talk. The only way I can describe it is that it was like someone had slipped me a "mickey". The next morning I told my husband to make sure I NEVER took that medication again!
    I realize that my experience with this med doesn't mean that anyone else will get the same reaction. If this med brings you relief from your IC symptoms then you may feel it is very much worth dealing with the side effects. Just make sure that you do your research.

    Leave a comment:


  • Charisse
    replied
    My dog takes cyclosporine drops for a "dry eye" immune condition.

    Leave a comment:


  • darlene
    replied
    I don't think I will get too excited about the prospect of using cyclosporine, an immune suppresent for IC.. I have been using Imuran, another immune suppressant, for nearly 20 years for Crohn's disease. I still have IC. I never ask to have my dosage increased because higher doses can cause increased risk of cancer and other serious blood disorders. These are very serious drugs that can make getting over the flu or other infections very difficult. One's entire immune system is suppressed. This is not a targeted treatment that would only suppress blood cells that may cause IC. It would make sense, to research this drug, before taking it. Darlene

    Leave a comment:


  • tiffRN83
    replied
    Thanks for the tip, I'll have to talk to my urologist at my next appointment in a few weeks. All of the kids I took care of at my last job who had heart transplants were on it, hope it can help those of us with IC who don't respond to typical treatments.

    Leave a comment:


  • L. Thomas
    replied
    My IC was originally diagnosed with the survey. It does have a rating for pain and # of time you go to the bathroom each day. I don't remember for sure what my score was the first time I took it. I think the total score is 35 and I believe I had 32. After treatment (and I KNOW it doesn't work for everyone) my score was 0 the first time and has increased or decresased by 3-4 points over the years. I complete a survey with each 6 month follow-up. When it goes up we talk about changes. When score goes down we talk about changes.

    I have had 3 urodynamics for a totally unrelated condition. I was being treated for IC based on symptoms and the cysto confirmed IC. The urodynamics would have never been performed to diagnose IC. My urogyne thinks that more invasive testing are not necessary to "diagnose" IC when the symptom scale is as accurate predictor. I think all MD's should pay attention to symptoms rather than trying to "diagnose" with invasive test before they will try any treatments. If the treatment works who cares what they call it.

    Leave a comment:


  • stacym
    replied
    Where can I find the 'O´Leary-Sant interstitial cystitis symptoms index'? I wish they would have reported symptoms as 1) how many times a day going to the bathroom and 2)pain scale.

    Thanks. Stacy

    Leave a comment:


  • smcclafferty
    replied
    Thanks Jill...I love information like this...it gives this pessimist the hope I need...

    Leave a comment:


  • mesafire
    replied
    The full abstract

    [121] EVALUATION OF SYMPTOMS IN PATIENTS WITH INTERSTITIAL CYSTITIS TREATED WITH CYCLOSPORINE A

    Jamil Chade, MD, Antonio M Lucon, MD, Daher C Chade, MD, Miguel Srougi, MD, PhD. University of São Paulo, São Paulo, Brazil

    Introduction and Objective: Interstitial Cystitis (IC) is a troublesome disease of the urinary bladder. Although 15 different types of medical treatment have been used, none of them has been successful and the patients are reluctant to accept the majority of them. We report our experience with cyclosporine A for interstitial cystitis.
    Methods: Two male and 34 female patients who fulfilled the NIDDKD (National Institute for Diabetes and Digestive and Kidney Diseases) criteria for the diagnosis of IC were included in this study. Diagnosis was confirmed by voiding diary, urodynamic evaluation, cystoscopic examination, and biopsy of the bladder. The symptoms were measured using O´Leary-Sant interstitial cystitis symptoms index (ICSI) before and after the proposed treatment. All patients had been treated with other drugs previously, unsuccessfully. After signing the informed consent, they received 1.5 mg/kg of cyclosporine A, twice a day, for 12 months. The patients were re-evaluated for the symptoms (ICSI) and by urodynamics at 6 and 12 months of treatment. Results: All patients prior to treatment presented with the maximum ICSI score of 36. The mean ICSI score decreased from 36 to 21,6 at 6 months of treatment, and to 15,2 at 12 months (p<0,001), with a mean decrease of 15,4 and 20,8, respectivelly. The mean decrease from initial symptoms score to 6 months after was 15,4 (p<0,001). The mean decrease from initial symptoms score until 12 months of treatment was 20,8 (p<0,001). Considering the bladder capacity evaluated by urodynamics, a mean increase of 92,9mL at 6 months and 107,4mL at 12 months of treatment was found. All the patients had biochemical analysis before and after the treatment, and no abnormalities were found for liver and renal function.
    Conclusions: Considering the treatment of IC, cyclosporine A represents a new alternative. The good tolerance, safety, and promising results recommend the use of cyclosporine A for the treatment of IC.

    Leave a comment:


  • Trishann
    replied
    I think it is a medicine people take when they have a transplant so their body won't reject the new transplant. Example: heart or liver transplant. But they are beginning to use this medicine for other reason.

    Take care, Trishann

    Leave a comment:


  • mesafire
    replied
    OK. Excuse me for sounding ignorant, but is Cyclosporine A availble to use now in California? Thanks for the reply. Mr. Phil

    Leave a comment:


  • icnmgrjill
    replied
    Finding this study -

    Go to the website: http://www.aua2007.org
    Click on Abstracts
    Click on Search Abstracts
    Register with your email address and select a password
    Then just do a keyword search for Interstitial Cystitis or by the researcher name

    That's from memory... but it should get you there!

    Jill

    Leave a comment:


  • Trishann
    replied
    Jill this stuff really scares me because of what Lori and some of the others went through with it. But I also think maybe it is like all other drugs, some will be able to do good on it and some won't do good. Maybe it will be a good thing if you have a doctor that will keep an eye on you and making sure that it is not working against you. Having a good doctor I think is the key when you are taking this any kind of medicine. That would be great if this thoes help a lot IC'ERS.

    Sending hugs, Trishann

    Leave a comment:


  • mom_in_ma
    replied
    Jill,
    Is there any way to find the full study? I'd like to know more about this one. There was a similar study in 2005 that found cyclosporine A was significantly more affective than elmiron. I'm convinced that my IC is autoimmune in nature and would like to talk to my doctor about this.

    Leave a comment:

Working...
X