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    I had three treatments and the worse happened.
    I had high fevers, chills and treatment had
    to be stopped. I was disappointed because
    this was my last hope. My body rejected the
    drug and was put on high doses of antibiotics.
    Today, I still have frequent coughs and chills.
    I am sorry to say this treatment did not work,
    but if I had to do it over again, I would
    give it a try. I ended up with nemphritis.

    MarilynD

  • #2
    The thing I find the most scary about BCG, is that it uses a LIVE bacteria.

    Comment


    • #3
      Here is a little explanation of What BCG is.
      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.



      Who manufactures BCG-Tice®? BCG -Tice® was developed at the
      University of Illinois. It is manufactured by , Organon Teknika Corporation,
      100 Akzo Avenue, Durham, NC 27712 and distributed by, Organon Inc,
      West Orange, New Jersey.


      References

      1.Arnot Ogden Medical Center
      2.Bacillus Calmette-Guerin immunotherapy for refractory interstitial
      cystitis. Zeidman EJ, Helfrick B, Pollard C, Thompson IM: Urology
      1994 Jan;43(1):121-4
      3.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
      4.Battle Creek Health Services:
      5.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
      6.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
      7.Organon Inc, Patients leaflet: January 1998: , Organon Teknika
      Corporation, 100 Akzo Avenue, Durham, NC 27712 and
      distributed by, Organon Inc, West Orange, New Jersey
      8.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

      written by: Diane Manhattan (ICN Asst Mgr)


      Marilyn,

      I am sorry that the BCG did not work for you. But I know that one day soon you will find the right treatment plan. With the way research is going there is no doubt in my mind that your answer is out there.

      I had two sets of BCG and the only side effects that I had was headaches and fatique through out each set of instills. To date only urinate about 6-8 times a day. If it wasn't for the severe nerve damage in my bladder from the all the massive infections eating away at my bladder wall I know that I would be in tip-top shape.

      Comment


      • #4
        Diane,

        I have the same problem, neurological damage due
        to spinal cord injury. I must say though, up until six years ago, I had no bladder pain. My
        problems developed after having bladder suspension. It put me in a terrible position.
        It had to be dropped later for I was unable to
        urinate for one year. I did not know that it had
        developed into IC, for I would not have had the
        drop. I don't have to urinate frequently, I was
        left with the burning pain. One good thing that
        came out of my situation is that I am able to
        cath three times a day, empting the bladder which
        I was unable to do before my bladder suspension.

        I might also like to add that detrol absolutely
        burns unmercifully. I believe that there will be
        some treatment available soon. I keep in touch
        with my uro and nurse often.

        I thought I had a cross to bear, but my husband was just diagnosed with a deadly cancer multiple
        myeloma at 60 years old who was always in the
        best of health. We are shocked with the news, and
        he is in the beginning stages. He has renal damage.
        I just hope that I will have the courage to see him through all of this, for today, I cannot complain. He has been taken care of me for 38yrs.
        My heart hurts more than anything.

        God Bless All of You and Holidays,

        Marilyn

        Comment


        • #5
          {{{{{Marilyn}}}}}sending prayers to you and your husband.

          My problems didn't become obvious until I had my bladder suspension either [img]frown.gif[/img] That surgery basically ruined my life. Had I been properly dx'd with IC at the time I might have been able to educate myself on the disease and I would have known NOT to have the surgery done. Up until the time the surgery was done, my IC was managed with antibiotics and hydrodilations every 6-9 months.

          wishing you and your husband the very best~
          teri
          ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
          Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

          Comment

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