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

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  • Sarah1519
    replied
    Re: Anyone on oral elmiron and elmiron instills at the same time?

    I take 400 mg per day and had instills for about 6 weeks during a flare, lots of stress at the time. Now just the oral, it has helped me 100 percent, though ai would like to taper down, my liver count is good.

    Leave a comment:


  • wife2TJ
    replied
    I get 2 instills a week and am on 300 mg's of Elmiron daily.

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  • pattig89
    replied
    I just had my 6th DMSO instillation yesterday and had a very long day at work from it.
    I had noticed the last few times I had one done the day after I got G.I. issues....
    I spent quite a bit of the day in the bathroom....At first I was constipated but than
    low and behold I got diarrhea it lasted for quite a few hours...I wanted to know if
    anyone else ever had this reaction to the DMSO instillations...If so could you let me
    know..I beleive that is my last one I will have especially how I have reacted to them
    these past weeks...I will start the Elmiron instills in a couple of weeks...Let me know
    if anyone has ever had this symptoms with this..
    Thanks
    Patti
    IC for 2 yrs.
    Meds
    Allegra 180mg.
    rhinocourt for allergies
    oxytrol patch
    prelief for acid
    patanol for allergies

    Leave a comment:


  • pattig89
    replied
    Mel,
    Let me know how you do with the home instills..I feel the same way going to the
    dr.'s 3x a week for 6 weeks is going to be a pain but you do need to do what
    you need to do...Good luck with that.
    Patti G.

    Leave a comment:


  • pattig89
    replied
    Hi Everyone,
    I just had an appt. with my uro today..I will be starting the Elmiron instills in a couple
    of weeks for 3x a week for 6 weeks...Unfortunately they had no appts. for next week
    so I have to wait a little longer than I wanted but hopefully it will be worth the wait.
    I to didn't want to take Elmiron orally for the G.I issues bothered me when reading
    about them...I so do hope that the instills work....I am nervous about the uretha
    burning and some of the side effects from the cath I am hearing...I hope I can
    handle it...Though my uro didn't say I could take the Elmiron orally and do the
    instills at the same time...Is that something your uro decided on his or her own??
    I am still confused by that...I hope that the instills work without having me take
    the pill orally....Does anyone know how long these instills will work for after the
    6 weeks is up...?? I am curious to know more about them...And if you did have
    any side effects from the instills could you tell me about them.....I am to trying
    to find that right mix of diet and meds...Good luck to all of you..I will let you know
    how it goes...
    Thanks
    Patti G.
    Ic for 2 yrs.
    Meds
    Allegra 180mg. for allergies.
    rhinocourt for allergies
    oxytrol patch
    premarin cream on occasion (menopausal issues)
    prelief for acid food

    Leave a comment:


  • rosesitty
    replied
    Patty G - I take oral Emiron (for six weeks) and was having Elmiron instills weekly as well. It didn't make any difference, so I switched back to heparin. I usually have trouble with meds, but haven't had any serious side effects with the oral Elmiron. No, there's no body odor with the Elmiron instills - unless you don't bathe! :-)
    Stephanie

    Leave a comment:


  • pattig89
    replied
    Hi Kiffy,
    I was wondering with the Elmiron Instills do you have that body odor you have
    with the DMSO's ?I am worried about taking the oral Elmiron too....I sometimes have
    problems with meds so this is a concern for me....My uro mentioned the Elmiron
    instills so that might be the route I will take...I will let you know if I start both
    also...I wish everyone luck with there method of treatment I only hope we all
    find what is best for us....Thanks for your input....

    Patti G.

    Leave a comment:


  • bunnykinb
    replied
    Has anyone who just does the Elmiron instills (no Elmiron orally) ever experienced hair loss? I don't think my thinning hair on top is really from the instills but wanted to get someone's opinion. I think I was wearing my hair in a ponytail too often.

    I did go back to the doctor's yesterday for my little son who has bronchitis too. The doctor rechecked me and now I am taking Advair and prednisone too.


    Thanks,
    bunnykinb

    Leave a comment:


  • mela414
    replied
    I'm sorry to hear that you are not feeling better. Hang in there..."this too shall pass". I don't do instills when I am sick with anything else. It's just too much for me to do or handle...let alone driving to the drs office. I don't do them at home either because the only energy I have is to lay on the couch and rest!
    Please feel better!

    Leave a comment:


  • bunnykinb
    replied
    I spoke to the nurse today. She said either my period caused the flare or that I was coming down with an illness. This passed Monday, I spent 2 hours at the doctor's office and was given antibiotics for bronchitis and maybe early stage of pneumonia. The nurse said I should wait to have my instill until next week when I will hopefully be healthier.

    For those who do your own instills or have it done at the office, does your office or you do the instills when you are sick?

    Oh, my insurance says I have to pay my co-pay for the instills even though I don't see the urologist. I already had 7 and have another 9 to go. Thankfully, the nurse said the doctor will waive the first 7.

    bunnykinb

    Leave a comment:


  • bunnykinb
    replied
    I had my 7th Elmiron instill Thursday, Oct. 6. I had been doing so much better since I started getting the instills on July 28. About 2 months of almost pain free. I was playing with the kids more. Well, I don't know what happened, but on Sunday, I started getting pelvic pain again. And, yesterday, I started with the burning. I really don't know what triggered it. When I have my next instill next week, I'll have to ask the nurse to check with the uro to see if the number of capsules for the instill should be increased.

    Ugh.

    bunnykinb

    Leave a comment:


  • monica78
    replied
    hey i got the elmiron instills. It was an elmiron cocktail. I actually drank a coke
    and I still am not hurting. Soda is my #1 trigger. I really am feeling better. I also quit
    smoking 2 weeks ago, that could have alot to do with it also.

    Leave a comment:


  • mela414
    replied
    Monica,
    I'm gad that you found some relief. I hope it lasts a long time too for you!
    What type of instills did you get?

    Leave a comment:


  • monica78
    replied
    Well I work in the same hospital that my uro's office is in. I am an ultrasound tech on the same floor his office is in. So it isn't out of my way to get to it because
    I am already there. I have to work to pay the bills even if I don't feel like getting out of bed some days. But here lately I feel alot better. I just had week 6 of my instills
    done so maybe this time it will last a long time. I hate having that cath every week.
    I quit smoking all most 2 weeks ago. I think that has alot to do with it.

    Leave a comment:


  • bunnykinb
    replied
    I am a baby when it comes to pain. I don't know if I could handle doing the instills at home. But, I have heard people using lidocaine to numb the area before inserting the cath.

    bunnykinb

    Leave a comment:

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