Questions

[SaraC]

Hi everybody:

Let me introduce myself. My name is Sara, I'm 23, I've had IC since I was 20, and have tried basically every treatment, except for BCG, in hopes of getting better. After having a terrible experience with Interstim (sacral nerve stimulation) therapy this past summer, I decided that maybe that was it for me, and that possibly no treatment was better than boching myself up any further. Now, it's several months later and I'm ready to try again. I'm scared about pursuing a new treatment, and in investing any more of myself in something that will probably not help, but I so desperately want to get better and need to go on in life, without so many limitations on what I can do and plans I can make.

Anyway, I am considering trying BCG as I've read some promising things about it. I was wondering if anyone with refractory IC (IC that wasn't manageable by anything else) has had a good response to BCG? I was also wondering if anyone did the treatments at home, or if it was absolutely required that the drug be administered by a doctor. I want to start BCG as soon as possible, but I am just starting a new job and I'm worried about asking for the time off for weekly sessions. I also am wondering what to expect during treatments, and when most people start to feel better. Is it possible to know that it is helping you during the course of therapy, or does it take much longer to see results? Any help or guidance would be greatly appreciated

Thanks so much,
Sara

[ICNAsstMgrDiane]

I did BCG and had great results.

As for you being able to instill it yourself, I was told that it had to be administered by a licenced medical provider. Her is a my story with BCG.

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 frequency, 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.

[Debra]

Hi Sara,

As you have probably seen with just about everything by now, some things work for some and not for others, and everybody's experience with any different treatment can be completely different. Like you, I've had IC (for about 5 years) which hadn't responded to anything. My uro (the same uro as Diane's) decided to try BCG after a cysto/hydro last year. During the treatment (from Feb-April 2000), I felt pretty badly (like I had the flu, especially the first few days after each instillation, but generally not well throughout), which makes me nervous about the thought of you doing it with a new job. That being said, however, it seems that my experience was worse than usual -- most people don't feel as badly during treatment as I did. As far as bladder symptoms during treatment, I had increased pain, frequency, and burning for about 24 hours after each instillation. I did not have anything similar to Diane's experience of seeing my bladder "slough off" during treatment, nor did another person being treated with BCG by my uro at the same time as I was. We kept looking in the toilet, excited to see the BCG in action, but didn't!

My general IC symptoms (frequency and mild-to-moderate pain) seemed to worsen from BCG, and lasted for a few months afterwards. I did not experience any relief until a month ago, when I started taking Ditropan XL. I don't know if it's just the Ditropan or if I'm seeing relief from BCG also. My uro told me that it can take several months after BCG treatment for it to make an impact. I have also started having frequent bladder infections, which mimic IC flares and have no identifiable cause. Could that be the BCG? Who knows.

So, I don't really know if the BCG helped me or not. Up until now, it did not seem to at all, and I'm not convinced that it made a big difference for me...my bet is that it is the Ditropan XL. I know that the treatment has been really effective (almost dramatically so) for Diane and some other people here, so just take what I'm saying as one of many possible experiences. I think I would have benefited beforehand from hearing more negative and positive -- I ended up really expecting relief and was quite disappointed after being so sick for no real gain.

So, good luck, keep asking questions, talk a lot with your uro, do your research, and I hope that this treatment will be one which works for you!

Debra

[SaraC]

Thanks Diane and Debra for sharing your stories with me. Are their others on this list who have had good experiences with BCG?

I am a little scared to start the program while beginning a new job, given the possibility for increased pain. I don't know how I could be in any more pain than I'm in right now though. Pain and pressure in my bladder and urethra is my #1 symptom, so the thought of being in any more pain sends shivers down my spine. I like the idea of the sloughing though. I think that definitely shows that the BCG is doing something. I am concerned that both of you mentioned bladder infections as a possible result of BCG. I haven't had a bladder infection in three years, so that idea really scares me, and I wonder if more people have also experienced infections after BCG. I can see how an infection would be a major setback, and I hope that both of you remain infection-free. I can't even imagine having a bladder infection on top of all this.

Unfortuntely, I tried Ditropan a long time ago and it didn't help me at all. Probably because frequency isn't my main problem. Bummer.....

One last question for Diane. You said that you feel almost non-symptomatic and yet say that you are still taking other medications for IC, and have occasional flares. I'm confused???? Was it an infection which set you off again?

Thanks,
Sara

[roserbot]

What is in BCG? I am an RN and it sounds like this treatment would help me. I have catherized myself many times per Dr.'s orders. This sloughs off bladder lining. Is it to allow healthy lining to surface?

[amys]

Can someone please explain the difference in "BCG" therapy and DMSO treatments??? Time and how often do you have to go to either?? Which is more successful??? I have mild to moderate IC pain and constant pressure on bladder and urethra. thanks, Amy I'm a little confused//
please email me at [email protected]

[ICNDonna]

Both therapies are addressed in the Patient Handbook at http://www.ic-network.com/handbook/

I have not had BCG treatment, but have been on DMSO for about a year and a half. I started with eight weekly instillations, and am now on a monthly maintenance schedule. The first few treatments caused pain for several days, but after that I am only what I would call uncomfortable for a few hours. The good news is that I sleep through the night many nights instead of being up to the bathroom five or six times (or more).

I know DMSO doesn't work for everyone and there are many other treatments available.

Hydrodistention has also been a major treatment for me since I was diagnosed in 1975 and when my pain gets severe I have another. I had my last distention in June 2000. DMSO isn't the total answer, but "in between" distentions, I certainly feel much better.

Donna

[ICNAsstMgrDiane]

DMSO is totally different from BCG.

DMSO is a anti-inflammatory, analgesic, muscle relaxant, mast cell stimulator and has collagen dissolution properties. It does not slough off the bladder lining. It is also used to piggyback the medications that are instilled, known as a coctial into the bladder wall. The course of treatment is usually once a week for 6-8 weeks. Than if neccasary a maintenance program is given.

BCG, on the otherhand is a strain of the TB virus, which has been used to treat bladder cancer for many many years. The action is unknown, but it is believed to slouth off the bladder lining causing the immune response to step in and regererate a new bladder lining.

The course of treatment is 6-8 instills; one every week.

Diane