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More info on elmiron & cystistat instillations!

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  • icsonja
    replied
    I have been doing elmiron/lidocaine instills for,wow over two years now and I think that the combo has healed my bladder better than anuthing I have tried. I have Hunners and since about 4 months into the instills they stopped bleeding, I have trouble if I am stressed or eat badly, but elmiron instills are so much better than using it orally, for me, it didnt work at all that way. And the cost is alot cheaper since you dont use as many capsules for instills as you will for oral useage.
    It just makses sense to put the meds where they need to be, and after my initial fear of not being able to do my instills at home (the first time was like a 3 Stooges movie with me, my mom and my daughter all trying to find where to put it..lol it was funny) now it takes about ten minutes of my week to do.
    The only downside for me has been that I have had several UTIs even with sterile everything, I guess it just sorta goes along with cathing frequently for some of us, any ideas on how to avoid a UTI post instill would be great.... I use a new cath each time, wear gloves, use Betadine etc, but I still get them more than I did before.
    Sonja

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  • Lisell
    replied
    instilling elmiron

    Hi

    I am sorry that your doctor wont do this. I think that my doctor is very reluctant to do the DMSO treatments and they have never mentioned the heparin treatments-

    Leave a comment:


  • hoping4acure
    replied
    Lisell: That is to bad you are in the western part of the state. I would make an appointment with your doctor in a heart beat! I just asked yet ANOTHER URO and he said NOPE...we don't do that here!

    I called the office that my original URO retired from (she picked two very compassionate doctors to take over her pratice.) The secrectary is going to ask one him if he does the installs, and I am going to call back next Tuesday the 30th. I am keeping my fingers and toes crossed! My flare's are coming closer and closer, so, what I REALLY need is a HYDRO.

    Wish me luck!

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  • Lisell
    replied
    My doctor does exactly the treatment that you used. THey usually only wait about 5 minutes for the lidocaine though. I am also in Massachusetts but in the Western part of the state.

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  • hoping4acure
    replied
    This was my doctors 1st choice of treatment--3 years ago! They helped me.

    She would install 20cc's of just the lidocaine first, let it sit for about 10 mins or so, then install the Elmiron, lidocaine and bicarb. But guess what? SHE RETIRED!

    I can't find a doctor around here that has every heard of this..I'm going out of my mind.

    I am printing this to show him. My appointment it next Wednesday (5/31/06)..wish me luck!

    Leave a comment:


  • Kara Isabel
    replied
    Thanks for posting this, Jill!

    I am very interested in Elmiron instills. There is an IC trial coming to my area (new uro just told me) I hope this is it! Or something even better!!

    Leave a comment:


  • ChrissySunshine
    replied
    Thanx Jill, It is encouraging to hear that advancements are being made in the treatment of IC. I've undergone several treatments, and am still looking for the one that will help me. I begin Elmiron instills tomorrow, and I'm nervous (cause I've had trouble with the Heparin instills..thanx too for the info on ingredients for other types of instills! maybe that was my problem before!). I'm nervous but hopeful at the same time!! Reading that more and more research is being done gives me hope that I WILL get through this! Thank You!

    Leave a comment:


  • pattig89
    replied
    Rose,
    Thanks for e-mailing me on the elimron instills..It is nice to know someone else
    is using this form of therapy....I to have been on it about a month now and have
    been eating more than usual...Which is great...I still seem to have an issue at night
    going to the bathroom a bit more than usual, not sure if I should contribute that
    to the fact I have been eating more and drinking more later at night need to experiment on that...I am not on Detrol LA but the oxtyrol patch I change twice a
    week....I always thought that has helped me also...Thanks for your input...Will
    you also have to continue with the elmiron instills for months down the road..
    Let me know what your uro tells you for I have a couple more weeks on this med
    and I will meet with her than...Thanks for your information and taking the time
    to e-mail me is so does comfort me to know someone else is going through this too.
    Thank you
    Patti G.

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  • pattig89
    replied
    Brenda,
    You say you have been instilling elmiron for 4 months....Do you do it weekly
    or monthly and how many times during the week or month do you do...I am curious
    for I have been doing elmiron instills for about a month now and I do believe they
    are helping me but I didn't know the long term therapy people have with these..
    It is nice to know something is helping though...Let me know your thoughts.
    Thanks,
    Patti G.

    Leave a comment:


  • BrendaS
    replied
    Jill,
    Thank you so very much for that information. I have been instilling elmiron for almost 4 months. I know it has helped me, and it is great to hear about this information because there is so little out there about instilling elmiron. Thanks again,

    Brenda

    Leave a comment:


  • Flore
    replied
    Thanks for the information Jill

    This information is great, because as you know, in México Elmirón is saled only for 1 dr, and the cost is almost $500.00 usd, so no many patients are able to buy it

    Yesterday I had the first meeting of patients in México City, and one of them told us that she was taking Elmirón for 1 year, and she didn´t feel any improvement. She has a very severe case of IC. Since last month, she began with heparin instillations, and she is better now, she says that she continue with pain, but is controlable, and she is begining with her life again

    So, for mexican patients, is a great information

    Again thanks!!

    Leave a comment:


  • icnmgrjill
    started a topic More info on elmiron & cystistat instillations!

    More info on elmiron & cystistat instillations!

    At the Bladder Symposium in October, several preliminary research studies were presented that discussed new instillations.

    #1. Lowell Parsons presented the results for using Elmiron intravesically. 40 patients were evaluated... 20 receiving just heparin (40,000 units of heparin) and 20 with elmiron (a solution of 100mg oral Elmiron, 80mg lidocaine and 3 cc's of sodium bicarb). 31 subjects had significant symptom relief. 9 had no change in their symptoms. In response to therapy, there was no significant difference between the two solutions.

    He concludes: "This is the first time we have had the capacity to introduce a solution into the bladder that immediately reduces the pain and urgency of IC in the majority of new patients.... It allows an excellent therapuetic solution for acute flares of IC. While heparin and elmiron have equal efficacy in the intravesical therapeutic solution, an advantage of PPSs over heparin is its substantially lower cost."

    #2. Dr. Jeffrey Dell (Knoxville, TN) released a study using intravesical elmiron or heparin combined with long term oral Elmiron therapy. 65% of patients reported a 50% or great improvement in their symptoms.

    #3. Dr. Edward Davis (Citrus Valley, CA) released a similar study... as above, also with similar results

    #4. Dr. Claus Reidl in Austria presented a retrospective study of using Hyaluronia Acid intravesically in the bladder, aka Cystistat. Results showed that 89% showed an improvement after therapy. 86% said that their quality of life improved significantly and that they would have this therapy again.

    So, the GOOD news is that there are new uses and applications to existing medicines. Frankly, many of us have long believed that elmiron could provide a much better benefit if instilled directly into the bladder. The first three studies above demonstrate that it can be a positive combination.

    Also...... here's a funny story. A good friend of mine used to instill heparin on a daily basis... with no problems until, suddenly, she started having pain. Turns out that the pharmacist started using a sodium chloride solution, rather than a water solution, to dilute the medication. Once that was resolved, it was, again, a pain free instillation.

    Remember, salt on any wound can hurt like the dickens. If you do suddenly have problems with an instillation, always ask about the ingredients. There is a chance that you could be reacting to one of the minor ingredients that, when removed, will make this a tolerable instillation!

    There's more research... I just haven't had the time to put it all together for you yet!

    Jill
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