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  • yvette
    replied
    Grammy, I know there used to be a couple people here who had pain pumps implanted...but not sure if they post here anymore...You might have better luck reposting in a new thread (this one is so old--from 2001) I wouldn't want your post to be buried under BCG if there is someone with pain management experience could that help you.

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  • Grammy
    replied
    Grammy

    Diane I have had a hypogatric nerve block done a couple of times without lasting effects. It sounds like your mother is going to have nerves cut. I was told that once you cut nerves they will eventulally grow back in time. Currently my pain doctor is suggesting a trial of a pain pump and I do not think I have ever seen anyone post on this site about having an implanted pain pump for pelvic/bladder pain. He said that he most likely would use something like fentenyl in the pump. Apparently you undergo a trial similiar to what you would do for an interstim. . He also said that just a tiny bit of medication in a pump would work as effectively as taking many oral medications that would put you to sleep. So I would be interested to know if any of you have a pain pump and if it has made your life a lot better.
    Last edited by Grammy; 06-11-2008, 03:57 PM. Reason: mistake in a word

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  • Smackey
    replied
    I also participated in the BCG Study several years ago in Baltimore. I was pretty lucky, I had few side affects and had 2 years of little to no signs of the IC. Unfortunately it doen't last forever but it was worth it.

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  • BaltoDCIC
    replied
    Yvette:

    I participated in the BCG study that was done several years ago and, for most of the participating patients, it did not provide any relief. It is not recommended for the treatment of IC and will not be getting approved by the FDA for it either.

    Although I didn't have many side effects from it, I didn't find it at all helpful either.>Tina

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  • liz2
    replied
    SuzZ, please keep us posted. There is a uro in Austin, TX (4 1/2 hours away from me via a two-lane road with unimproved shoulders)that is working with BCG and swears by it. Could you ask your uro about the problems that may occur with an IC patient with Hunner's ulcers.

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  • yvette
    replied
    repost

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  • dianeO
    replied
    Hi, I am caring for my mom, who is in severe IC flare. She has had BCG through last Dec/Jan and is still hoping against hope for some improvement. Her flare seems to be the result of the BCG and she is under the care of a pain clinic for uncontrolable pain, as many of you can relate to. I wonder how long she has to wait for some sign of improvement. She has been offerred the option of hypogastric nerve block to permanently cut the bundle of nerves which control that area of pain. She is considering waiting for some sign of results from BCG, which I don't support, but it is her condition. What time frame do any of your guests see for improvement of no improvement, and what percent improvement???

    ------------------

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  • suz z
    replied
    Well, I AM going to do a second round of BCG starting next Monday. I did it two years ago. If it helps me again like it did before it will be worth it. Wish me luck.

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  • Debra
    replied
    Hi LM,

    I'm the one who posted about getting bladder infections since the BCG. To be honest, I really have no proof that the infections are related to the BCG...it was just a hypothesis borne out of frustration. My doctor does not attribute the infections to the BCG. It's hard for me to imagine that the infections are mere coincidence, but it could definitely have to do with something other than the BCG. I just don't know exactly what.

    I don't know if the BCG really helped me much. I do know, though, that I don't think that I experienced severe harm as a result of going through it (the process was not fun, however), and I have heard about people who have really experienced positive results. Because I don't know where I'd be at if I hadn't done the BCG, I can't judge whether it worked, did nothing, or made things slightly worse. So, it's good to be weighing the pros and cons, but maybe not so much to really really worry about.

    Good luck! Keep asking lots of questions about this.

    Take care,
    Debra

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  • LM
    replied
    Hi Yvette,
    Well it's kind of complicated. I do wish I had done it over the summer when I was scheduled because in October I developed this new urethral thing which I don't think will respond to any bladder treatment and that upsets me. I guess at the time I was supposed to do it there were other things going on that were influencing me. For one thing, I had vaginal stuff going on and I was afraid having a catheter might push any infection into my bladder - in retrospect that fear was probably unfounded. Also I guess I was a little afraid of the treatment itself...like the toilet bowl thing..I mean if it's too dangerous to go in the toilet (which you can put human waste in) it got me scared, why is it OK to put right in my body? My family also scared me a little...my mom has this image that it's like pouring acid on my bladder and they think that would be a crime and I would just do more damage...etc.etc. Although I figure I already have zero life now from my symptoms, I have to do something drastic. My pharmacist also doesn't like it because she has one customer who had it and is now a carrier (?)I don't really know what that means. I had also had a phone consult with Dr. Whitmore who was very optimistic that I would get better on the Elmiron along with other, less drastic things. I think she is one of the doctors who thinks BCG is too drastic. She doesn't even like DMSO for this reason. I was really drawn to it though because I had been to a doc in the US who used it often and had good success...better than the other treatments. It's still there in my mind as a backup but I've been waiting since October now for this new problem to go away (which it hasn't). Oh yeah, I also was having bodily pains during the summer which got me thinking of autoimmune disease and I started thinking if BCG is a bacteria then maybe it has potential to trigger autoimmune disease.I was afraid since I am so young, what could be the long term effects of this, like in 30 years? My uro said not to worry about this though, and my family doc said lots of people have been using it for years without a problem but he said in theory, my thinking made sense. There was one woman with whom I had some correspondence who did it and had very good results and her success was encouraging for me. (although when I posted this autoimmune question she did say she's had an increase in allergies since having it). A few months ago someone else came here talking about how she gets infections now since having the BCG which she didn't have before and that worried me a little. Someone else asked if that could be related but no one answered. I just wish there were more studies to show whether it in fact works or not. I guess a lot of doctors think the benefit hasn't been proven enough yet to justify the risk. Hope I didn't confuse you more - I tend to really overanalyse things.

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  • yvette
    replied
    Hi LM, I don't know if I'll go thru with it--especially if I couldn't get a Friday afternoon appt. There is NO way I could do the bleach in the toilet bowl thing at work. Just the idea of possibly infecting someone with TB because of my treatment would kill me. Not to mention that would go over like a lead balloon with the people I work with. How come you didn't do it? Did it have to do with the treatment or was it something unrelated? I was jsut curious if you had some other conerns I didn't think of.
    Thanks!
    y.

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  • LM
    replied
    I forgot to add that I was going to do this over the summer last year but I didn't go through with it so I did do a little research about it if you want to ask me. There are still some things I don't understand myself but haven't had the energy to ask here.

    Leave a comment:


  • yvette
    replied
    Thank you very much Diane!!! Exactly what I needed!
    y.

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  • yvette
    replied
    Thank you very much Diane!!! Exactly what I needed!
    y.

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  • Guest's Avatar
    Guest replied


    Yvette,

    I had BCG done twice. Even though it is used for bladder cancer, it is not chemotherapy. I had no side effects that would be considered close to the side effects of Chemo.

    My symptoms were fatigue and a headache for the first 24 hours.

    Here are the transcripts...
    http://www.ic-network.com/guestlectu...ranscript.html
    http://www.ic-network.com/guestlectures/peters.html

    Heres my story:

    My Experiences with BCG

    By: Diane Manhattan

    In July of 1998, after a great deal of consideration, my physician
    suggested that even though not approved for the treatment of
    Interstitial Cystitis, but because of the promising results of clinical
    trials, that I should consider intravesical BCG as a possible option.

    As a proactive IC patient, prior to committing myself to BCG
    instillations, I took to the computer and researched BCG in general
    and as a possible treatment option for IC. In my research many
    questions came to mind that I knew that I needed answers for. Some
    of the questions that I needed answers for were, Could I become
    infected with the TB Virus? Could I spread the TB virus to others?
    What side effects will I have? What precautions should I take? Would
    my bladder tolerate holding the medication for the prescribed amount
    of time?

    After reviewing my concerns with my physician and understanding
    the all the pro's and con's of BCG, I decided that BCG was an option
    for me. Prior to the start of the 6 weekly instillations, I had an IVP
    and a Sonogram of the kidneys and uterers. This was done to make
    sure that my kidneys and uterers were functioning normal and that
    there was no chance of the medication entering into my kidneys. I
    also started a voiding diary so that we could determine and monitor
    the effectiveness of the BCG.

    I was also given instructions from my physician in reference to the
    preparations that I needed to do before and after the procedure. I was
    advised not to drink any fluids four hours prior to the instillation, and
    to take an antibiotic after the procedure and two doses the following
    day to help with the prevention of infection due to catherization.

    During the course of treatment, I stopped all medications that I was
    taking for IC except for my pain medications and my self-help
    strategies i.e., heating pad, ice packs, electrical stimulation and
    TUMS.

    I started my initial treatments on July 31st, 1998. Because BCG is
    most effective when it is instilled once a week for a period of six
    weeks, we had to abandon the initial treatment plan due to major
    setbacks.

    On October 2nd, 1998 I Anxiously arrived at my physician's office,
    BCG and solution in hand, ready to start my six weekly instillations.
    A little nervous, but thinking to myself, that this may be the one
    option that can bring some hope. As the physician was ready to
    administer the catheter, I requested that lidocaine be administered
    first. Unfortunately, I was told that it would effect the effectiveness of
    the BCG. So the catheter was inserted and the BCG/solution was
    administered.

    I was given directions to make sure that I held the medication for 45
    minutes. I questioned this, because I was under the impression that
    the medication should be held for 2 hours, rotating from front to back,
    side to side in 15-minute intervals. I was determined to follow the
    instructions of the clinical trials, so I went home and rotated from
    side to side, back to front. After 1-½ hours, I was ready to burst, so I
    emptied my bladder. As the solution was releasing itself from my
    bladder there was a slight burning sensation. Other than the slight
    burning after the initial void, the effects of the first night were minimal.

    On Saturday the day after the treatment, I woke up with a headache
    and feeling very sluggish however, the BCG did not increase my pain
    levels. The headache lasted two days, but the fatigue continued
    throughout the six instillations.

    My second instillation was the same as the first, there was burning
    after the medication was voided and lasted a few hours.

    When I went for my third instillation, this was a little different. The
    medication burned while inside my bladder, where before the burning
    only occurred after I emptied my bladder of the solution. When I
    voided I could actually see the sloughing of the bladder wall in my
    urine. I was a little nervous, but I knew that this was one of the
    actions of BCG. For three days after the instillation my pain levels
    were a slight higher and I started taking my pain medications on a
    regular schedule.

    I started another three-day voiding diary, so that I could monitor
    myself to see if there had been any improvement in my frequency
    since the initial treatment. (see below)

    Before the next three treatments, I started to take my pain
    medications prior to the instillation. I noticed by doing this that it
    helped with the discomfort that was associated with catheter
    insertion, the burning while the medication was inside my bladder
    and also helped in allowing myself to hold the medication for a longer
    period of time.

    After the fourth, fifth and sixth treatment I could actually see more of
    the bladder lining sloughing off. I also had darkened/dry blood in my
    urine, but I was advised that this was normal. My pain levels seemed
    to increase a little more, but not to the extent where it interfered in
    my daily routines.

    Questions that I have been asked regarding my experiences
    with BCG?

    1. When did I notice the initial change in my IC
    symptoms?
    I noticed a slight change in my IC symptoms after the 5th
    treatment. I felt as though I was able to hold my urine longer
    between voids. However the pain levels did not change.

    2. How long after the 6th treatment did I feel that the
    BCG was really working?
    Probably two months after, when my nocturia went from 3-4
    times a night, to 0-1 times per night.

    3. How long did it take to notice a change in my pain
    levels?
    The pain waxed and waned for two months, having a few bad
    days every couple weeks. By the third month, I had very little
    pain. By the fourth month I felt as though I was symptom free.

    4. When did you notice an improvement in your
    frequency and urgency?
    Prior to BCG, I was voiding on the normal, 16-20 times a day.
    With-in the first month of the 6th treatment, I kept a voiding
    diary, which showed that my daily voids were slowly
    decreasing. By the 3rd month, I was retraining my bladder
    (bladder protocol), and trying to see if I could wait and empty
    every 3-4 hours.

    5. How am I doing now, 7 months after the last
    treatment?
    My voiding patterns are just about normal. I do have days that
    I have freguency, but the urgency has improved dramatically.
    Before the BCG, if I had the urge to void, I had to go then. Now
    I am able to hold it with out the urgent feeling.

    6. Would I do it all over again?
    Yes…I feel that this shows definite promise.

    7. Do I have any other concerns after the BCG
    treatments?
    I suffer from chronic bladder infections. I am paranoid, that the
    infections will have an impact on the progress that I have
    made with the BCG.

    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.

    What results have been seen in clinical trials?

    12 patients elected to receive BCG in an open label study
    response rate in the open label study was 67%
    2-year follow-up: 8 of 9 patients or 89% experience a positive
    clinical response with no additional treatment for interstitial
    cystitis
    voids per day decreased 31%
    nocturia improved 54%
    mean voided volume increased 61%
    pelvic pain decreased 81%
    vaginal pain decreased 71%
    urgency decreased 71%
    dysuria decreased 82%
    well-being improved 54%
    Rand-36 quality of life survey overall improved 64%.
    Of the 9 subjects who received BCG and responded, 7
    complained of dyspareunia at baseline but at a mean
    27-month follow-up dyspareunia resolved in 86% (6 of 7)
    6 of the 8 long-term responders were taking narcotics to
    control pain at baseline and at follow-up no patient reported
    narcotic use.
    14 of 15 subjects who received BCG (93%) stated that they
    would have participated in the study again
    60% BCG response rate compared to a 27% placebo
    response rate was found
    intravesical Tice strain BCG has been demonstrated to be
    safe, effective and durable in the treatment of interstitial
    cystitis. Of the subjects responding to 6 weekly intravesical
    instillations of BCG 89% continue to have a positive clinical
    response with a mean of 27 months of followup. Of the
    subjects who received BCG and did not respond there was no
    worsening of symptoms.
    Further research is continuing. 3

    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.

    What Centers are doing BCG Clinical trials and Where can I
    get more information?

    Kenneth Peters, M.D.
    William Beaumont Hospital
    Royal Oak, MI
    Coordinator: Eleanor Anton
    (248) 551-3355

    Daniel Culkin, M.D.
    University of Oklahoma
    Oklahoma City, OK
    Coordinator: Sharon Fisher
    (405) 271-2622

    Christopher Payne, M.D.
    Stanford University School of Medicine
    Stanford, CA
    Coordinator: Michelle Ferrari
    (650) 725-5543

    For More information please see:
    Date: May 19, 1999 Interstitial Cystitis Network - Chat Log (© 1999,
    www.ic-network.com) Topic: Bacillus Calmette Guerin (BCG)
    Speaker: Dr. Ken Peters, MD, Beaumont Hospital, Royal Oak MI

    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 biopsiesMichael 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

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