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Anyone on oral elmiron and elmiron instills at the same time?

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  • mela414
    replied
    I started doing them at home myself about a month ago. Boy does it make life easier! Once I am set up I usually relax by reading a book. It tkae my mind off of things. Also, I've notice that I do a better job than the nurse as ther is no pain when I put it in! I've learned the exact angle to put it in!
    give it some thought...it might be better all around for you and it's not as bad as it sounds!

    Leave a comment:


  • curlycue
    replied
    Monica,
    Have you ever considerd doing the instills at home yourself, I went through the same thing that you did going back and forth to the drs and it was a pain, after 3 years they finally convinced me to do them at home and they showed my husband how to do it and then I ended up doing it myself. Good Luck

    Leave a comment:


  • bunnykinb
    replied
    Cayugasegull,

    The nurse also dissolves the capsule with saline solution only then inserts it through a catheter. I am taking urocit-k 3 times a day and Atarax at night since March 2005, but I wasn't feeling better. Then July 28, 2005, I had my first instill and felt improvement within 2 weeks.

    bunnykinb

    Monica,

    I saw the urologist on Thursday; he said since I am not getting the typical instills every week for 6-8 weeks, and am getting them every 2 weeks, I have to get a total of 16 instills. I have only had 6 so another 10 to go. That will take me through February 2006. Man, that is a long time, but it is better than having burning and pelvic pain all the time. I have cut out the Atarax myself to see if I feel worse. I don't want to be on medications and need to try and cut a cost out.

    I see the GI doctor October 6, and if he doesn't see anything wrong with my throat, then it must be the Elmiron or stress causing the throat tightness. I started with the throat tightness 9/21 but didn't have my Elmiron instill until the next day. So, it really might be stress. If it is stress, then maybe I can do the instills weekly.

    bunnykinb

    Leave a comment:


  • monica78
    replied
    Hey cayugaseagull,
    My doctor gave me a prescription of the oral elmiron capsules. I take those pills with
    me to the office and the nurse dissolves them down into a solution, a cocktail that contains
    elmiron caps, lidocaine and something starting with a B.
    They have really helped me.

    Leave a comment:


  • cayugaseagull
    replied
    My husband contacted Elmiron and they know nothing about elmiron being instilled in the bladder. they only offer the oral pills. Where do you get the instills from?

    Leave a comment:


  • monica78
    replied
    my doc said if it didn't last a long time that we would have to start the instills again
    for another 6 weeks. So far so good, my last instill is next week. I have just quit smoking this week so my bladder does feel better. I am a little stressed out though.
    My uro said it will different for everyone, maybe 6 months, a year. It just depends
    but if it doesn't help, I will try again. I hope you find long lasting relief.

    Leave a comment:


  • bunnykinb
    replied
    Monica,

    How long did your doctor initially say the Elmiron instills would be helpful? I go in this Thursday for my 6th Elmiron instill. I will ask the urologist the same question I asked you. My husband is so happy that I have been doing good for almost 2 months now. But, I want to feel good much longer than that.

    I noticed though, during my period, I still have the urethra burning. Once I go back on the active pills again, I am good again.

    bunnykinb

    Leave a comment:


  • monica78
    replied
    HI bunnykinb,
    I never saw a GI doc about my throat and it did go away on its own, thank goodness.
    It took a few months though. I am now on week four of my instills and I sure can
    tell a difference in my bladder right now. I hope it continues to get better.

    Monica

    Leave a comment:


  • bunnykinb
    replied
    Monica,

    How was your small throat diagnosed? Through an endoscopy? And, how long did you have problems swallowing food or was that with the Elmiron only? I postponed my GI appointment until Oct. 6 because I had too many things going on Sept. 22 and the GI is out the following week. My hubby was just saying that this is the longest I have gone without complaining of pain. It is now 5 weeks, but I certainly do not call it remission. If I ever can be pain free for a year, maybe then.

    bunnykinb

    Leave a comment:


  • monica78
    replied
    hey bunnykinb
    Please let us know your GI appointment goes!
    I wish you will feel better for a really long time!

    Leave a comment:


  • bunnykinb
    replied
    Monica & everyone,

    Thank you for responding and not letting this topic die. Everytime I have my instills, I have to take a benedryl for precautionary purposes. I had my 5th one today. I hadn't asked the urologist yet about how long the instills benefits last. Monica, it is great that yours last so long. I sure hope mine does. The nurse said if I am doing better that the uro will send me back to the primary care doctor for him to give me my prescriptions for atarax and urocit-k. And, if I feel bad again, I will have to ask for another referral. When I talk with the uro in 2 weeks, I will ask him for follow-ups to see how I am doing rather than throwing back into the pile where the primary care doctors don't know how to treat IC. My throat feels a little swollen after hours later from the instill. I have a GI appointment this month to check further into my throat tightness since the ENT scope found nothing.

    Feel free to PM me. I welcome your support.

    bunnykinb

    Leave a comment:


  • cayugaseagull
    replied
    elmiron instills

    Is this something that has to be done at the doctor's office or can it be done at home. My husband use to do the combo instills I did years ago.

    Leave a comment:


  • DawnsRuby19
    replied
    I take the elmiron orally 3 times a day and have just started started back up with the elmiron instillations. Wow!! Everyone seems to have the instills at weird times.. I have my instills 3 days a week for about a month and then go to having 2 a month.. and so on!! I recently just changed uros because my old one wouldnt let me do the instills at home and I got to the point where I couldnt make the 60mile drive so often. expecially after an instillation. My new uro is about 10minutes from my house so it has made things easier on me. The only other instill i have tried is the DMSO.. but I really hated those and they caused me a lot of pain.
    Anyway, I too am allergic to sulfa, but I dont have any problems with the elmiron. I just always have a dry mouth.. but that is also a side effect from some of the other medications I take. If you want, you can e-mail me or send me a PM. I hope these treatments keep working for you!

    Leave a comment:


  • cayugaseagull
    replied
    Oral Elmiron

    I have been taking oral Elmiron for about 9 years now. I need to have blood work every 6 months to check liver function, but no ill side effects yet. I am interested in the elmiron instill though, just heard about them. Any info please send to [email protected]
    Thank you

    Leave a comment:


  • monica78
    replied
    hey bunnykinb!
    I have had the elmiron instills before. I had them once a week for 6 weeks. I was in
    a huge remission from my symptoms for a year and a half. I would occasionally have
    to take a pyridium if I ate too much of something I should not have ate. My symptoms
    came back about a few months ago. I had a cysto with hydrodistention that only lasted two weeks. Now I am having my elmiron instills again. I am on week 3 as of this
    Thursday. I also am on elavil and on pyridium plus as needed. The elmiron is the only thing that has really helped me. I have to do the instills because taking it orally gives
    me diarrhea or constipation. My hair also was falling out by the handfuls and I actually
    was getting missing patches on my scalp. The strangest symptom I had was a tightness in my throat like my throat was too small to swallow my food. But after being off of the oral Elmiron that went away in a few months. I hope yours will soon.
    Maybe this helps you. I hope you feel better soon.
    Monica78

    Leave a comment:

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