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  • Completed BCG Study

    Greetings,

    Just wanted to say that I just completed my inital six weeks of treatment in the Stanford BCG trial.

    I'm almost 100% certain that I didn't get the placebo as I got flu like symptoms with headaches and join aches after the first couple treatments.

    Overall, I had a very positive experience and I can't say enough nice things about the people in charge of the study. They were wonderful!!! So refreshing to meet people in the medical community that actually care about solving the IC mystery.

    My next step is to basically sit and wait for six months to see if anything happens.

    At the six month point I'll have the option to repeat the treatments.

    Feel free to email me if you have specific questions.

    Derrick

  • #2
    Please be sure to post and let us know how you are doing. It's always exciting to see new studies --- one of these days, the cure will be found.

    I really admire you for participating in the trial.

    Thank you.

    Hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Derrick,
      I am happy to hear your treatment went well. I have a warning for others who might be testing BCG. The bacteria used, is weakened, but still alive. Please make your doctor aware of any drug you are taking for any other illness. If you are taking immune suppresants, or Remicade for any other condition, the results could be disastrous. Remicade has been deadly in patients who also have TB. Immune suppresants combined with a weakened, but not dead bacteria could also be very, very, dangerous. Please, please, let your doctor know about ALL drugs you are taking before doing the BCG trial.

      Comment


      • #4
        I have completed my 6 months after the first instillation of BCG in the study at the University of Maryland under Dr John Warren. I hope you have at least as good results as I have experienced. I will have my 6 month clinic visit on Tuesday, May 21, 2002. I have not had my normal IC pain in nearly 4 months. I still have some frequency, urgency and nocturia. But I was having to void from 30 to 36 times in 24 hours before the BCG and now I am down to 20 to 24 times in 24 hours. I also think that my bladder has increased capacity since my prestudy voiding diary was about 100cc each time but now it averages about near 200cc and sometimes nearly 300cc. I find that I will have some cramping when I hold urine too long, but it resolves in a matter of about an hour.

        If anyone is thinking about BCG, I will tell you that it has been a great help to me. I still have some discomfort from cramping, but less each week. What I have now is like a hangnail compared to the pain of IC!! I would like to have less nocturia, I still get up 5 or 6 times most nights. Even that is a big improvement for me since I now get one or two streches of 2 or 3 hours of uninterrupted sleep since the BCG.

        I also can vouch for the great care and consideration given to me by all the staff and Drs John Warren and Toby Chai of the UM Research Center. They are more interested in the comfort and care of IC patients than I could ever have hoped. With groups like this working for us, IC will a lesser problem for our children because they will find treatments and a cure.

        Best wishes and prayers for all.

        Pop.

        Comment


        • #5
          Pop,

          I am so glad the the BCG has also helped you. I am also one of those that did the BCG and the BCG did wonders for my IC.

          According to research, BCG is showing very promising results and the sucess rate is about 80%.

          Diane
          Diane sadly passed away in October 2003. We are honoring her memory and contribution to the IC movement in the IC Angels program. Learn more about that, and about Diane, at: http://www.ic-network.com/icangels/

          Comment


          • #6
            I'm interested in knowing what the theory behind instilling the BCG. Anyone know much about it??

            Comment


            • #7
              What is BCG?
              Bacillus Calmette Guerin

              BCG -Tice® also known as Bacillus Calmette Guerin or the Tuberculosis bacteria/virus. It is a vaccine, composed of a live weakened strain of "Mycobacterium bovis" which is derived from cows. BCG is administered in two ways, either by intradermal injection or intravesical. 1
              Intradermal injections of BCG-Tice®, Outside the US, has been used for the prevention of Tuberculosis. Intravesical treatment of BCG-Tice® is FDA-approved for carcinoma in situ (CIS) of the bladder. In January of 1994 a published report in, Urology 1994 Jan;43(1):121-4, titled "Bacillus Calmette-Guerin immunotherapy for refractory interstitial cystitis" by Dr's. Zeidman EJ, Helfrick B, Pollard C, and Thompson IM; Urology Service, Brooke Army Medical Center, San Antonio, Texas, suggested that BCG may be an effective treatment for Interstitial Cystitis.2

              How was it learned that BCG could be used as a treatment for IC?

              BCG treatment for Interstitial Cystitis was found by accident. A woman who was thought to have had carcinoma in situ of the bladder underwent BCG treatments. She was misdiagnosed and it was determined that she had interstitial cystitis and not carcinoma in situ of the bladder. However, after completing the treatment course of BCG, her symptoms of Interstitial Cystitis resolved.3

              How is BCG administered?

              BCG is administered (as per research trials) in six weekly instillations. The intravesical dose consists of one vial of Tice-BCG suspended in 50ml preservative-free saline.3 The BCG and diluent is administered through a catheter. You are asked to hold the medication in place for 2 hours, Rotating every 15 minutes from side to side, back to front. This enables the medication to be distributed equally in the bladder.3,7

              In order to hold the medication for this suggested period of time patients should not drink fluids for four hours before treatment.

              (Note: Many physicians that are doing BCG treatments out of the study trials, require that you hold the medication for at least 45 minutes.)

              What are the possible side effects?

              "Flu-like" symptoms: fever, shaking chills, increased fatigue, nausea/vomiting, headache or dizziness, joint pain, coughing, skin rash, blood in the urine, severe urinary symptoms, or other disturbing effects.7

              Can you contract the TB Virus while on BCG?

              One of the risks of BCG is becoming ill from the treatment with high fever, chills or sepsis. It is unlikely to actually contract TB. The risk of a serious side effect is low based on our experience in bladder cancer and would occur more likely in men due to catheterization of the prostate and potential bleeding associated with this. (Quoted, Dr. Peters: Chat transcript May 18th, 1999)

              What Special Precautions Should Be Taken After Receiving BCG Treatment?


              For safety reasons, urinate to expel the liquid by sitting down on a toilet.
              Add two cups of chlorine bleach to the toilet bowl after urinating, and do not flush for at least 15 minutes.
              Repeat this process each time you urinate for 6 hours after each treatment.
              To avoid contamination, cleanse your hands and genital area thoroughly each time you urinate Drink plenty of fluids to wash out your bladder during the hours after the Tice BCG treatment.4

              How does BCG work as a treatment option for IC?[

              The method of action of BCG is still unknown, However, it is thought that "efficacy of BCG in treating Interstitial Cystitis may be due to stimulation of type 1 T helper cell response, allowing for destruction of stressed immunogenic cells and promoting reparitive conditions... Correcting the underlying abnormal immunoligic event may be the reason why intravesical BCG is effective in treating interstitial cystitis.""3,5,6

              Another possible factor, as observed in uncontrolled trials, is evidence that "Interstitial cystitis may be associated with low urinary nitric oxide level and increasing nitric oxide in the urine has shown to correlate with an improvement in symptoms. Intravesical BCG, has been shown to be a potent stimulator of urinary nitric oxide in the bladder cancer patients".5,6

              Intravesical BCG may be effective in treating IC by correcting an aberrant immune imbalance in the bladder, leading to long-term symptomatic improvement, as reported in, Urology 1999 Sep;54(3):450-3.8


              What does BCG do to the bladder lining?

              BCG is considered less caustic than Silver Nitrate or Clorapactin. It slouths off or eats away the tissues of the bladder wall. Silver Nitrate or Clorapactin burn away the tissue of the bladder wall.

              [b}references[/b]
              Arnot Ogden Medical Center

              Bacillus Calmette-Guerin immunotherapy for refractory interstitial cystitis. Zeidman EJ, Helfrick B, Pollard C, Thompson IM: Urology 1994 Jan;43(1):121-4

              The Efficacy of Intervesical Bacillus Calmette-Guerin In The Treatment of Interstitial Cystitis: Long Term Followup; Kenneth M. Peters, Ananias C. Diokno, Bruce W. Steinert and Jose A. Gonzalez; Department of Urology, William Beaumont Hospital, Royal Oak, Michigan. Journal of Urology: Vol 159, 1483-1487, May 1998

              Battle Creek Health Services:

              Expression of nitric oxide synthase and heme oxygenase in interstitial cystitis (IC) bladder biopsies Michael R. Ruggieri, Sharon Filer-Maerten, Philip M. Hanno and Michel A. Pontari, Philadelphia, PA. NIH grant # R01DK49501 and #R01DK39086

              Urinary nitric oxide synthase activity and cyclic GMP levels are decreased with interstitial cystitis and increased with urinary tract infections. Smith SD, Wheeler MA, Foster HE Jr, Weiss RM J Urol 1996 Apr;155(4):1432-1435

              Organon Inc, Patients leaflet: January 1998: , Organon Teknika Corporation, 100 Akzo Avenue, Durham, NC 27712 and distributed by, Organon Inc, West Orange, New Jersey

              Preliminary study on urinary cytokine levels in interstitial cystitis: does intravesical bacille Calmette-Guerin treat interstitial cystitis by altering the immune profile in the bladder?Peters KM, Diokno AC, Steinert BW: Department of Urology, William Beaumont Hospital, Royal Oak, Michigan 48073, USA.Urology 1999 Sep;54(3):450-3
              Diane sadly passed away in October 2003. We are honoring her memory and contribution to the IC movement in the IC Angels program. Learn more about that, and about Diane, at: http://www.ic-network.com/icangels/

              Comment


              • #8
                I would like to try the BCG treatments. Are there any doctors or facilities in the South (near Memphis, Tenn.) doing these studies?

                Comment


                • #9
                  lyse3,

                  Talk to your doctor about BCG. In the md section,
                  http://www.ic-network.com/md/ we have a listing of where the trials are being done.

                  If your doctor uses BCG for his bladder cancer patients, than perhaps he would be willing to treat you with BCG also.

                  Diane <img src="graemlins/lmao.gif" border="0" alt="[lmao]" />
                  Diane sadly passed away in October 2003. We are honoring her memory and contribution to the IC movement in the IC Angels program. Learn more about that, and about Diane, at: http://www.ic-network.com/icangels/

                  Comment

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