To Suz and anyone who's tried BCG?

[suz z]

Dear LM, you're right, it's a weakened strain, not completely killed.

I have been doing Cystistat for about three years, off and on. Sometimes as close as every two weeks, sometimes waiting as long as a few months, depending on symptoms. It always makes me feel better within about two days, but it doesn't last. I wasn't doing the Cystistat at the same time as getting the acive BCG instillations two and a half years ago. This time I had just had a Cystistat instillation a week before the BCG started and the uro didn't think it would be a problem. But we guess now that it was.

I'm not Dr. Peter's patient and I just emailed him and he replied. I looked up the site for Beaumont Hospital in Detroit and emailed him there and he responded immediately. I think that is Sooooo nice!!!! Not many busy doctors would bother to do that.

No, I'm not angry about the pharmacist - why should I be, sorry if I sounded that way - just wondered why a pharmacist's opinion about this would be more important than a uro's - but then there are uro's who are clueless and pharmacists who really know their stuff, I guess...

If there is anything else I can tell you, please post again.

I'm going for the second of this set of instillations on Wednesday, and then another the following week and then I'll talk to the doctor and we will decide if we need to do two more.

I haven't had any symptoms this time and we don't know if that's because I've had it before and have developed an immunity or if it's just not working because of the Cystistat instillation just the week before.

I'll keep you posted.

Suz

[Debra]

Hi,

I'm sorry that I haven't responded earlier, as I was one of the people who had written previously about my experience with BCG.

BCG did not appear to be effective for me, though I know it has for others. I am also the person who has been getting recurrent bladder infections. I don't know if it is related. I did the BCG in winter/spring 2000 and then began having UTIs in August 2000. I have had about 15 UTIs since then, and nobody can give me a straight answer why. It may very well have nothing to do with the BCG. I also started taking Ditropan XL around the time I started getting infections, but I had taken many different anticholinergic drugs before that (including regular Ditropan) which never gave me infections before- in fact, I never had an infection before Aug 2000. Maybe the BCG left my bladder vulnerable in a way that would make me get infections from a drug like Ditropan. I also got an infection 2 times this spring when I tried to start taking Prozac. My old uro (I just moved from NJ to Boston and am currently without a doc) denied a connection. Personally, I have no idea. Everyone is so different and our bodies are so quirky!

As far as testing positive for TB, I work in hospitals and have been testing probably 6 times since then. I have never had a positive result. The first time or two that I was tested, however, I had a slight flu-like reaction for a day, which was very similar to how I felt after BCG instillations. That didn't happen after subsequent tests, though.

Whether or not to take something as experimental as BCG is such a difficult decision. Since the risks are so unclear, but some people have had such success, just tread carefully and make sure you're comfortable with the knowledge level of your doctor around this.

Good luck!
Debra

[LM]

Thanks Suz and Debra.
Debra I'm so sorry it didn't work for you and you've been suffering from these infections. That is scary. My mom is always saying everything you do could make you worse and I guess it's true Also like I mentioned I think Diane had problems with infections too. I wish they knew more about what it does to the bladder. I wonder if it causes more damage and thus makes it more vulnerable to infection. Have you found anything that helps?

Thanks also Suz. Let us know how you fare this time around. I was encouraged to hear of your friend but when you said she was on Elmiron already I wasn't sure if it was the elmiron that helped her. Was she feeling better before the BCG?

I had spoken to someone who had such good success with it that it gave me renewed hope but now I'm not sure. I certainly don't want to get worse. And I guess you never know what happens to people afterwards (I haven't spoken to this person in a long time)...maybe she had negative effects after a few months as well.

Maybe I will consider writing Dr. Peters - that's amazing how nice he sounds. I'm so shy though when dealing with doctors. I'd feel weird just writing him out of nowhere.

[suz z]

The big turnaround for my friend, in terms of pain, was after the BCG, relief starting at around the 5th week, more at around 2 months and leveling out after 6 months, just like me. She had been taking Elmiron at the time for about a year and did not stop taking it.

However, I had the BCG at the same time and had similar results and I have never been on Elmiron.

Both of us had done Cystistat instills before the BCG and after the BCG when comfort levels fell a little. Cystistat is soothing.

What is it that helped? Well, working backwards, for me: I stopped the Cystistat on a regular basis and it didn't significantly change things. However, I felt specific relief after the Cystistat for a few weeks, better than usual. As I said, I'm not on Elmiron.

My pain started to rise around six months ago. It is possibly related to a high level of cortisone I was given to try to treat a massive skin condition following lots of IV antibiotics. So, was it the cortisone or the antibiotics which may have started the pain flare again, and will the BCG I'm doing again reduce it back down again?

Don't know. I'm going for 6th instill tomorrow morning. I had two and asked the doc if the Cystistat we had done the week before might have affected the result, so he added three more to the schedule, and might add two more after that if we don't get any positive change.

Wouldn't it be great to figure out this puzzle? My doc is right. If I keep doing different things at the same time I'll never find out what works, but of course I'm more interested in relief than he is, and he is more interested in information, not to say that he doesn't care about pain relief in his patients.

I just want to be as NORMAL as I can be. Maybe never NO PAIN, I'll live with that, but just please, low enough level to be able to stay pysically active.

If I can help with any more info please post again or email to [email protected]

I'll let you know how it goes.

Hugs and healing,
Suz

[suz z]

Oh, forgot to say: I'm not getting any flu-like sypmtoms this time. In fact, no symptoms at all. I almost wish I did cause then I would know it's doing something, but maybe it is anyway and I'm just lucky not to feel sick.

[LM]

Thanks so much again Suz. Good luck tomorrow. I just have one more question - you said that you and your friend did Cystistat when comfort levels got worse...are you saying the effects of the BCG lessened for your friend as well? Did yours get worse before the cortisone and the infection? I read in Dr. Peter's transcript that he thinks any improvement is lasting or even continues so I'm curious if this is not really the case.

Let me know how it goes this time. I know what you mean about wanting to feel something so you'd know it's working. But it sounds like you have a great doctor who is really trying so that's a good thing. Sorry to be such a pest, it's just a huge help to hear from someone who's personally done it rather than a doctor who doesn't really care (like my former Dr.)
~L

[dedeash]

Hi
I have not tried the BCG but my uro is Dr Peters, so if you would like to send me a list of questions, I could ask him and post the results. I have just had the staged Interstim done and it was a success after 3 surgeries. If I want to do anything else in the future, my next step would be the BCG.

Dede [email protected]

[LM]

Thanks Dedeash, I will send you an email if that's ok. I just wish there were more people who have had it done so we could know more about these risks. Right now I just have a bad feeling about it based on the stories of 1 or 2 people and I don't know if I'm getting an accurate picture. I just really don't want to get any worse than I already am Anyway, i'll send you an email if that's all right. thanks again

[suz z]

Well, after six instillations of BCG I've had no side effects, no flu like symptoms and so far have not felt better. I had written to Dr. Peters about doing it again, and he had written back that there would be no problem trying again, so I did.

Improvement could come in a few weeks, possibly, but somehow I doubt it.

Cystisat is a soothing instillation that I've been doing, and my friend as well, along with bladder distentions, because that helps too.
Remember, there is no absolute cure, and I'm not in a study, so I don't really care what it is that works! I just want to feel better.

The BCG had gotten my pain level down from 7-8 to 1-2, but still with occasional flares which weren't so bad but still came. That was the reason for the Cystistat.

So, he new plan is to start Elmiron, which I started last Friday, along with an antihistamine. I just don't know what antihistamine, because they make me very jittery (rather than sleepy). This time I tried Claritin and it made me jittery too. I am going to talk to a pharmacologist (not pharmacist) tomorrow to see if he has any suggestions.

I was not worried about infections from BCG. I believe Dr. Peters that the odds of getting sick are very small, and just think of all the side effects of other drugs and treatments we use!

Keep hoping...

Suz