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  • Peggy Anne
    replied
    Has anyone done these instillations and NOT had pain? I am currently instilling Heparin and my hair is falling out by the handfuls and I have little to spare to begin with. And the Heparin is not helping. I don't have pain now, and am afraid if I do the BCG instillations, I will get pain. Can you tell me what causes the pain? Thanks!!

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  • cbsummer
    replied
    I was told that you most likely had it done every 6 months. If I feel better I might be able to stretch it out to a year. It will become a maintence thing

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  • Jill Lindgren
    replied
    Hi!

    I am very eager to hear the results of the clinical trials for BCG. Anyone been helped by it? Also, I read the effects are long lasting for the majority of people that it worked for in the early days of trial. Is it thought to possibly have permanent positive effects or is it something that one might need to do every few years?

    Jill <img src="graemlins/hi.gif" border="0" alt="[hi]" />

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  • cbsummer
    replied
    My experience was simaliar except the pain didn't hit me for 2 1/2 hours just like clock work. A little burning when i voided the bcg out but no more than I have 90% of the time . I would take a vicodine right after i voided so it would be in full force when the pain hit. It was really bad for about 4 to 6 hours then back to the "normal" pain. The first 2 treaments I had no real pain but the last four i did. I just kept telling myself it must be working.

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  • Dianna C.D.A.
    replied
    I have had four people email me in the last couple of days asking what the BCG treatment was like and what they could expect. I also had severe agonizing pain when I did the potassium test. In the picture that my doctor gave me of the inside of my bladder, it shows red swollen tissue with sores that are the size of a nickel. They were red and yellow and looked just like a canker sore that people get in their mouths.

    I tried BCG therapy twice. Each time was once a week for 6 weeks. The first time my bladder pain had increased probably due to having to use a catheter. (even though I used a catheter that is normally used on children)By the time I got to the last of the first six treatments there was no doubt the pain during the procedure was agonizing (Which makes you feel like screaming but instead you have to try not to urinate for a minimum of one hour.
    So, I bet you are wondering whatever made me try this therapy for another 6 instillations. In my defense I think it was kind of like labour pains - I guess I had forgotten how painful it was. I think that it took 6 months before I got the pain down to a level that it was before I started.
    The best thing about the BCG is that I was allowed to do it myself at home. I work as a healthcare provider so my doctor agreed to let me do it myself. After I drained my bladder of the BCG and urine I can remember thinking how glad I was that I didn't have to get into a car in this kind of pain. Each bump would have been another knife entering my bladder.
    Hope this helps

    I am not sure if it is possible or if my doctor agreed to it only because of my work, but I think that everyone should be given a choice of where they would like to have it done.
    It actually was very simple:

    Everything must be kept as sterile as possible.

    Must be able to catheterize yourself - use the smallest catheter that you can get

    Mix the vial of BCG into saline and put into a 60cc syringe with an end that attaches to the catheter.
    Put all of the vial into the bladder and lie down
    Every 15 minutes change positions which will help the BCG to get to all sides of the bladder.
    An hour later go to the bathroom and urinate the BCG and urine. Do not flush the toilet until bleach is added. BCG is very potent and we have to be careful that it doesn't end up in the water supply.

    In fact I was the only one in the family that used my ensuite bathroom for the entire time that I was doing BCG therapy. I didn't want anone else to come into contact with the BCG it is toxic that's for sure.
    If you are comfortable doing all of the above then I would highly recommend you talk to your doctor. Another possibility is to check out the possibility of having a Registered Nurse come to your house to do the treatments. You may be able to hire them yourself through a temporary agency that works with people in the medical field.
    If you have any other questions please email me anytime.

    ***important - if any of your doctors agree to let you do this treatment at home, make sure that there is always an adult who could call the ambulance and handle the situation until I get there.
    Dianna <img src="graemlins/toilet.gif" border="0" alt="[toilet]" />

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  • cbsummer
    replied
    I went a serious of 6 treatments. The last three being rather challenging as far as pain goes. It has been a month now and I feel no relieve worst if anything. Another treatment that didn't work I quess. I keep hoping I will fall into the percentage that the treatment works for. I am suppose to go back in three months and do a serious of 3 treatments. I don't know if it is worth it as the first treatments didn't work guess i'll discuss it with the doc.

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  • Nachomama
    replied
    Hi Jill:

    I've responded to your PM. Don't forget to check it out. Anyway, I've been reading The Official Patient's Sourcebook on Interstitial Cystitis and it has an entire chapter (#4) on Research and Studies. There is a study (Project titled: Beaumont/Ford Interstitial Cystitis Clinical Center) that started in June 1998 and will end in February 2003. I am assuming that sometime after February, there will be a report released on this study's findings. The web address given by this book to check this study out is http://commons.cit.nih.gov. I have not yet researched other BCG studies, but please take a look at this site to see what's there. The principal investigator and institution is Ananias C. Doikno, Professor and Chief at William Beaumont Hospital in MI.

    I am currently trying to read this book as fast as possible. However, I've found a lot of typos, so if you have problems with the web address, let me know. I paid $30.00 for this book and, at the very least, expect they know where the spell-check button is. I plan to write the editors about the typos.

    The current study that I am participating in involves 260 patients from around the country, including one site in Canada. The purpose of this study is to investigate the effectiveness of intrevesical BCG in treating the symptoms of IC and the results of this trial will not be released until sometime in 2004. I was told that I was the last person enrolled in this study by the study coordinator, so I guess y'all'll be wait'n on me. [img]rolleyes.gif[/img] &gt;Tina

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  • Jill L.
    started a topic BCG clinical trials

    BCG clinical trials

    Hi!

    I see that several sites around the country have just begun clinical trials for BCG. I know that the first initial study was done with a very small amount of individuals. Does anyone know if this is the first nationwide clinical study that is being done since the first one? Has any other country done studies on BCG for IC?

    Jill [img]smile.gif[/img]
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