BCG - more than once

[Peggy Anne]

I received 6 instillations of BCG about 6 months ago and I am now going to be getting 3 more this month. I was wondering if anyone has tried BCG, then tried again several months later. My doctor said the "normal" procedure was 6 treatments, 3 more 6 months later, and 3 more 6 months after that. Just wondering what I could expect. The first one only helped for 2 months, and now Im back to "normal". Thanks!

[Ronald]

Hi Peggy Anne, i scream have had BCG instillations, I only get them when my condition gets to the point when I can no longer manage the pain,it works good for me,lasts about 3-4 months. scream

[cbsummer]

I had the first 6 and then for the last year every three months. I am under the opinion that the three weeks is not worth relieve for about 6 weeks. I jusy finished a session of three and it sends me into a major flare which will last for a while. I did have a good six weeks. My symptoms never go away completely but I can get on with life.

[Peggy Anne]

It doesn't sound like anyone has has much luck with BCG treatments, or at least no long term improvement. I am taking it for frequency and urgency not pain. I wish there were more people taking it with positive effects. I don't know where to go from here, I've taken everything else and nothing seems to help. At least I can be greatful that I do not have the pain like so many other people. Thanks for your replies!

[Sharyn]

I really appreciated your messages. I am going to see the doc next week and he may suggest BCG treatments. I will post what I find out.

[claire784]

I had bcg instillations and it was one of the most painful time of my life. I kept passing huge chunks of tissue and blood clots. My doctor told me it was supposed to eat the lining of my bladder so that a new healthy one could grow back in its place. Well, I never got any relief and would not reccommend it to anybody.

[Peggy Anne]

I just finished my three weeks, and it was pretty rough. But it is actually helping, my frequency is noticably down. I still don't have the pain, and I get worried every time I do these instillations that it will cause me to start having pain. But so far I've been lucky. I just don't know how long this decrease will last. I never heard about the liner being rebuilt, that would be nice if it were true. I want my doctor to take another picture of my bladder and compare it to the ones pre-BCG. she wont though until it calms down... that will be interesting though to see if it looks any different.

[tillysav]

hi

Does anyone know if the bladder liner can be rebuilt? Is that what BCG is supposed to do? That would be a great.

[Peggy Anne]

From what my doctor told me, Heperin, which is in Elmiron, is supposed to be able to rebuild the lining of your bladder over time. BCG is supposed to attack your bladder lining, as its a TB vaccine, and this causes your immune system to react and try to heal the bladder lining. I've had Heperin instilled in my bladder but it caused my hair to start falling out - so we switched to BCG. I've had 6 treatments, then 6 mos later 3 more, and in 6 more months I will get 3 more. So far it has helped with my frequency for about the last 2 months. I only get flares about once a month if at all. I dont know if its directly related to my bladder lining but its the only treatment I am doing right now. I hope my information is correct and it helps you!

[suz z]

I had 6 BCG treatments in 1998 - and they did help me a lot - i think it was one fo the best things i did. In 2000 I had 6 more treatments and again they helped.

I started taking Elmiron in 1999 and have also used Cystistat. I am now pain-free and my frequency is not bad. I would say I'm in remission but I won't cause I'm still taking Elmiron and wouldn't dare stop.

It is hard to say what helped the most but I'll warrant that I haven't had a cold since the first BCG treatments - so did they boost my immune system?

Suz