To Suz and anyone who's tried BCG?

[TMBA]

What symptoms did you have before trying the BCG? Did it improve you much. My main symtpoms are urethral burning/bladder pain and urgency. I don't have much frequency. I have failed basically all other treatments and my doctor is talking to me about Interstim. I was thinking maybe I should try BCG first. What do you think???? Also I read in one of the posts that after 6 months the patient felt like a new person -- did you still have to follow an IC diet???
TMBA

[suz z]

Dear TMBA,

I had pelvic pain, pressure and frequency. My pain level was about 7-8 and I couldn't just keep taking pain pills and go to work.

BCG instillations were a breeze. No problem for me - no pain with the procedure.

Afterwards, flu like symmptoms (chills and fever, and joint pain, headache, lights too bright etc.) for a few days each week between treatments - except one week when I was sick the whole week and in a lot of pain - ended up I had a bladder infection and needed antibiotics. They postponed the next instillation because of this.

I started to feel some relief after about the fifth week. Sort of the first tingle of relief like when you're pregnant and you first feel the baby move. By two months I was seeing noticable improvement. After 6 months I felt almost normal.

I did start to eat some more normal food. My friend who has IC also, and has Hunner's ulcers did the BCG at about the same time, and she is also on Elmiron now. She can eat tomatoes and drink Margaritas! I've never been able to tolerate stuff like that, so far.

Lately my pain has been increasing and is now around 5-6. Part of this may have been caused by moving to a new state etc. Or, no proof here, I had a major colon surgery (right hemisphere colectomy) and had a lot of antibiotics which caused a major rash, and then was treated with a lot of cortisone. There was ONE comment I read in Dr. Peter's interview that cortisone can had an adverse effect on BCG. So, maybe that's why it's not working any more.

My uro and I decided to try a second round of BCG, full strength but for only 3 weeks and today was my first instillation. I'm hoping to get a reprieve of pain symptoms again.

I don't think I would try interstim first. It's more invasive, and no guarantees there either.

True BCG is still in trials, but it's been used for bladder cancer for more than 10 years and for IC for at least 2 and a half.

Good luck,
Suz

[TMBA]

Suz, Are you in a trial that you get to use BCG now? My doctor in Maryland said that they will possibly have a trial starting in Novebmer but when asked if he would put his wife on that he said he wasn't sure. He seemed very hesitant. He said he recommended DMSO instead and I was wondering if you ever had DMSO and what your experiences were with that?? Also did BCG help you with pain. I have alot of pain in my urethral area but on examination it is definitely the bladder that is more tender.

[liz2]

My uro said BCG was very dangerous, is that true? He also said a number of researchers believe it may be the answer for the future? And, no, he would not use it for my treatment, but he did not hesitate changing from DMSO cocktails to Cystistat. So this man is innovative and not "faint hearted."
Tell me more, please. . . .

[LM]

I almost did the BCG about a year ago. There are definitely some dangers but it has been used for cancer for awhile. My doctor wasn't so hesitant to use it on me, although maybe he just wanted to placate me. Cystistat is really harmless though, so I understand why a doctor would want to start there. There are 2 expert talks about it on this website which are pretty helpful. I thought I remembered the doctor from those chats saying not to use it on people with Hunner's ulcers? Anyway if you search back to posts from the past year you can see some of my opinions on this. I gave it a lot of thought and did a lot of research. My pharmacist doesn't like it, and I admit I guess I chickened out because it scared me too.

[LM]

I realized my post might have been more confusing than helpful because I am confused as well. I wish there were more people who had had it done so I could get a better picture of risks, efficacy, etc.

Liz did your uro say what he meant by dangerous? I have read about the risk of TB but then I started to develop other worries. It seems like some of the people here started to get infections afterwards. Sue have you had any problems with infections since you had it done? I am also kind of scared if there will be any long term effects. My family doctor reassured me it is safe in that respect but I'm still scared of that so I'm wondering what is is that all these doctors don't seem to like.

[liz2]

LM, My uro probably felt it was dangerous because of the Hunners ulcers. That would explain a lot. I can't get specifics now, because that particular uro (who dealt only with IC and prostate cancer) died of a massive heart attack 6 weeks ago. There are soooo many more things I wished I had asked him.

In his five years of treating me, he taught me more about the disease than anyone else ever had. I have combed through his notes over and over again to get more insight into what pieces of the IC puzzle he was putting together. We had talked about more alternatives, but now I know he was considering several alternatives if Cystistat and DMSO ever stopped working.

Now I'll have to wait for further discussions until November when I go back to Houston to see the "back up" uro that I was told to go to if my uro was ever unavailable. I didn't bargain for this type of unavailability.

Because I live so far away now, my husband is helping me do self-instills and my GP helps us moniter infection, etc. Between the two doctors, we are able to get supplies and keep the lines of communication open. Fortunately, my GP is a firm believer in IC and realizes what it can do to someone's body.

[LM]

Thanks Liz, sorry about your doctor I can sort of relate as I don't even have one now (long annoying story). After 2 years of being sick I'm just here on my own. I also have a really nice and compassionate family doc but he can't really do anything for me.

As the BCG goes, it's very confusing to me as I've done a lot of research on it, but I have been trying to find people here who have done it for a while and very few have. I think ICDiane has done it but I don't see her here anymore, I think she has been ill. There used to be more who I wish I had picked their brains more because I just hear and read *such* conflicting things about this one that I have no idea who to believe.

[liz2]

LM, For both of us it's a case of would've, could've, should've, had've, ought've!

What do you do if you get into so much pain that you need a cysto/hydro?

I am going to have to go to Houston for that, and I will be off of my HMO preferred network. Isn't modern insurance wonderful!

[LM]

Hi again, I discussed BCG with my mom today and she is totally freaked out by it b/c our pharmacist told her of a client who's now a "carrier" of TB ...so she thinks I'm going to get TB. I don't even know what that means. But I guess that explains some doctors' hesitations.

I'm confused from your posts in my elmiron thread about that study where you say how much it has helped. I just realized it was the same person so I'm confused what treatment you think is helping you. Do you think the elmiron would not be enough and that is why you are also doing the instillations?

[yvette]

To LM and Others wondering about BCG: I reposted a post I did a while back on BCG. ICN Diane posted a wealth of info. I thought it might help you all

LM: As you know BCG is a strain of the tuberculosis virus, that's what TB stands for. I wondered too if I might become a carrier for the TB virus. I know my mother is, because of all the Mantoux tests she's had. In her line of work, as a social worker, she was always getting the Mantoux test done.

[LM]

Thanks Yvette - you can see I had a lot of the same concerns then. I've been reading occasionally to see if there were any follow ups on some of those people but none of them post here anymore so I don't know what to make of it. There are still too many unanswered questions for me. Like the few people who seemed to get more infections afterwards, etc. And I wonder what happened to all those who don't post here about it anymore - like some of the people in that thread - I always think the worst. I have read those posts by Diane and I found them encouraging but I don't know how it held up for her in the long run either.

My mom is just so against it and I guess I couldn't do it for that reason as well, since if something really bad happened she would just be saying "I told you so".

What does it mean to be a carrier anyway?

[suz z]

I'm sorry that I've been out of touch and haven't responded to questions.

I had BCG treatments for the first time in April 1999. It was not a trial. I have never been in a trial.

By the 5th instillation I was starting to notice something different, didn't know what exactly, but some relief. By two months, I was feeling a lot better. By six months I attained maximum relief from the BCG. My pain level went down from 7-8 to almost non-existent to 2. I say almost non-existent because I'm always aware of my bladder and healthy people aren't, but even "2" is in the discomfort area compared to PAIN in the 7-8 area, for me.

About six months ago the pain started sneaking back up again. I wrote to Dr. Peters who is the most active in BCG research and asked him what he thought. He replied immediately and said that he has done second rounds and advised a full strength dose but for only 3 weeks, and then see what happens.

I approached my new doctor (I moved to VT from FL) about doing this second round of BCG and was told it would be fine. Then due to some administrative foul ups between my primary doctor and this doc's office, which is not an issue regarding the use of BCG, I chose to change doctors.

My new uro felt that a "booster" of BCG would be fine. He does not, and neither did the two other uros I had seen in the past 4 years, think that BCG is dangerous. Yes, it is true that there have been some bladder cancer patients who have contracted BCG but please consider that they were in different situations than we are. As far as I know there have been no known cases of TB with IC patients to date.

Also, I have been assured by my doctors, that the BCG instillation does not make you a carrier to other people. The only time you have to be careful, according to the protocol is that you should chlorinate the toilet you use when you void after the instillation, for the first six hours, however often you void. That will make sure that the BCG is not possibly transmitted through bodily fluid to another person using the same toilet.

Otherwise, think of all the nurses who instill BCG in bladder cancer patients day in and day out all over the world. They are not getting TB!

LM, what make your pharmacist an expert on BCG compared to an MD-uro who uses it??? Also, you should know that the BCG is a deactivated strain of TB. IT is NOT active TB virus.

As far as pain: I have experienced absolutely no pain with the instillation. I go in first thing in the morning, without eating or drinking so that my bladder is as empty as possible, get the instillation and then start to flush with water (and eat) after my first void. I try to hold the BCG for about 3 hours. (It's only about 40cc's.)

Yes, if you have problems being cathed, you might want to ask for a small cath, like a 14 French or even a pediatric 10. It will take a few more minutes to instill the BCG but it does not hurt. There is no lidocaine used, in fact lidocaine is contraindicated because it will kill the effects of the BCG. Also Dr. Peters has stated that anyone who is on Elmiron should be off it for at least two months before doing BCG. I don't know if this is to make sure that the BCG is what is effecting healing in his studies or if, as he wrote in one of the interviews here, BCG binds with the Elmiron and makes it less effective.

Anyway, sorry this is so long, but there is more.

I have been using Cystistat as well, because it coats the bladder lining and helps some more. I had a Cysistat instillation a week before I started the BCG. After 3 instillations there was no improvement. So, last week we agreed to do 3 more, assuming that the Cystistat may have interefered with the efficacy of the treatment and if I still don't get relief, my uro said he would do 2 more.

If that doesn't work, we'll think of something else!

The bottom line is that it did work for me, for more than 2 years. It also worked for a fried of mine who had the BCG at the same time that I did, and she has Hunner's Ulcers. She's still in "remission" and can eat spaghetti with tomato sauce and drink Margaritas! That's really saying something. Also, she is on Elmiron, and has been for 3 years and didn't stop when she had the BCG - so draw your own conclusions - I can't tell you why or what worked...

But I do think it's safe. Safe enough.

Heck, you can get killed crossing the street!!!

I'll check in again to answer questions. Sorry I've been gone.

Hugs to everyone, and hope you're doing ok.

Suz

Suz

[LM]

Hi Suz, thanks so much for your detailed reply. I don't think my pharmacist is trying to outsmart anyone, she just reported a fact to my mom that she has a client who this happened to. You sounded kind of angry by that comment. Anyway I thought it was a weakened strain but not actually killed. There were some researchers near me studying a killed version, and they didn't publish anything but I read they didn't have good results.

Liz, as far as the Hunners ulcers, I just mentioned that b/c I thought I remembered reading in Dr. Peter's transcript that it was contraindicated for those ppl ...but I remembered wrong, so I apologize. He said it's ok for people with the ulcers, but not ok for people with "active bleeding".

Suz can I ask you another question - I'm not clear if you're saying you're doing the Cystistat at the same time as the BCG or you're doing it now and if it doesn't work will then do the BCG. I read that about the BCG binding to the elmiron so I was afraid to do any instillation of a coating nature since I thought it would have the same effect in blocking the BCG? I wonder if I could email Dr. Peters with these questions if I'm not his patient.

Well it is encouraging to hear people's success stories. Was your friend feeling better at all from the Elmiron before she did the BCG?

Thanks again, ~L

[liz2]

LM, If you are talking about me with Elmiron and instills, My uro and I found out the hard way that neither Elmiron nor instills alone were sufficient for treating my IC. And even with the combination, I have to have hydros every 6-8 months in order to handle the pain and have some quality of life. My IC is very severe.