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  1. #1
    ICN Member LithEruiel's Avatar
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    How long do these meds take to work?

    I mentioned all this in another thread, but I'm really frustrated and wondering what the next step is if this doesn't work.

    Ok here goes: I was taking Ditropan 5mg (regular, not XL) twice a day and after almost 3 mos my muscles got so tight it was making my frequency worse not better. Before then it seemed like it was helping. I tried cutting it down to once a day and it helps but not very much. I could tell the difference though the first day I took it.

    I started taking Vesicare this Friday and I feel so much worse. Ifeel like I'm not taking an OAB med at all. I called the pharmacist I work with and she looked it up and said Vesicare can take 2-3 months to get the full benefits. I can't go for 2-3 months like this!

    If you've taken Vesicare, how long did it take to work for you? What about other meds: Detrol, Enablex, Sanctura, or anything else?

    Of course if I can take these brand meds will depend on if I can get samples or on a patient assistance program since I don't have insurance.

    I'm so frustrated with the frequency!!!! It's been pretty much my only problem since I've been on Elmiron. Btw, I also just started taking Cystoprotek (hasn't had time to work yet) and I take Zantac and Benadryl with prelief as needed. I try to do the diet, but it doesn't seem like I have many food triggers. I don't eat much to begin with (picky eater) so the diet is really hard for me. I tried Cysta-Q but it seemed to make me flare.

    I'm so frustrated I don't know what to do. I have class all day Mon-Weds and I'm always running to the bathroom. It's really getting depressing.
    ~Ashley



    (LithEruiel is my name in Elvish...sort of.)

    30 year old RN with IC, diagnosed September 2008. Diagnosed with PFD at some point later!

    Current treatments/meds:
    Elmiron 100mg 3x a day
    Continuous birth control
    Diflucan 100mg or 150mg way too often for a normal human being
    Symicort & Pro-Air for asthma
    Synthroid 0.25 mcg for hypothyroid

    Failed:
    Ditropan, Vesicare, Gelnique, Urispas, Benadryl, Hydroxyzine, Cystoprotek, Cysta-Q

  2. #2
    ICN Member musiclover's Avatar
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    Keep it up, it really does seem to take time with all these meds, it totally sucks. I really think the Cystoprotek is helping me a little. A few days ago I would have been singing its praises, but today I'm in a frequency flare. But I know these things don't work in straight lines, so I will still recommend Cystoprotek. It may be partially my fault since I haven't been to the gym in three days and working out seems to make my symptoms better. But I've only been on CP for a month and already noticed a slight difference. They say it takes 3-4 months. I know what you mean, though. This frequency thing is the worst. I feel like it runs my life some days. There are so many things I want to do, but it's just so hard when your bladder and urethra are yelling at you to go to the bathroom. And then you go, and it's like a one second dribble. Then you feel slightly better for ten minutes and then it's back. Sigh. I just want to scream. Or cry. Or both.
    Update! Feeling much better these days and no longer on any meds!

    Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.

    Things that helped me the most: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day).

    Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax, Hydroxyzine (50mg), Alesse Birth control (this helped my period flares when my symptoms used to be bad), PTNS (I think this helped).

    [/COLOR][/SIZE][/FONT]

  3. #3
    ICN Member LithEruiel's Avatar
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    Yeah same here. I think Cystoprotek is helping me too already, but just like Elmiron and everything else it's not helping with frequency. Have you ever taken an OAB med?
    ~Ashley



    (LithEruiel is my name in Elvish...sort of.)

    30 year old RN with IC, diagnosed September 2008. Diagnosed with PFD at some point later!

    Current treatments/meds:
    Elmiron 100mg 3x a day
    Continuous birth control
    Diflucan 100mg or 150mg way too often for a normal human being
    Symicort & Pro-Air for asthma
    Synthroid 0.25 mcg for hypothyroid

    Failed:
    Ditropan, Vesicare, Gelnique, Urispas, Benadryl, Hydroxyzine, Cystoprotek, Cysta-Q

  4. #4
    ICN Member nottoc4's Avatar
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    Before being diagnosed with IC I had been getting treated for OAB.None of the meds helped. I started on Dritopan,then Enables,Dytrol LA and Vesicare.
    I have been taking Elmiron since late April this year and Imprimine and my frequency has improved greatly. I do keep a food log and have been experimenting with some new foods. I rarely have any pain with new foods but the frequency increases,especially at night.

  5. #5
    ICN Member LithEruiel's Avatar
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    do you have any side effects from the imipramine? I don't know much about it.
    ~Ashley



    (LithEruiel is my name in Elvish...sort of.)

    30 year old RN with IC, diagnosed September 2008. Diagnosed with PFD at some point later!

    Current treatments/meds:
    Elmiron 100mg 3x a day
    Continuous birth control
    Diflucan 100mg or 150mg way too often for a normal human being
    Symicort & Pro-Air for asthma
    Synthroid 0.25 mcg for hypothyroid

    Failed:
    Ditropan, Vesicare, Gelnique, Urispas, Benadryl, Hydroxyzine, Cystoprotek, Cysta-Q

  6. #6
    ICN Member musiclover's Avatar
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    Hi. Yes, I took Oxytrol for 3 months. It's like ditropan, but it's a transdermal patch so you don't get so many side effects. Oxytrol and ditropan didn't do much for me. It did make it harder to urinate, but it didn't help with frequency. I think because my frequency is caused by irritation/pain. I urinate because the urine causes it to hurt, so I go to stop the hurt. And if it hurts really bad, then I can't stand to hold it because the pain can be overwhelming sometimes.
    Update! Feeling much better these days and no longer on any meds!

    Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.

    Things that helped me the most: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day).

    Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax, Hydroxyzine (50mg), Alesse Birth control (this helped my period flares when my symptoms used to be bad), PTNS (I think this helped).

    [/COLOR][/SIZE][/FONT]

  7. #7
    ICN Member LithEruiel's Avatar
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    yeah, I know what you mean. I don't usually have the hurt though, just the "have to go" feeling. I seem to be having much more irritation taking the vesicare though...I haven't done anything else differently. I wonder if the vesicare itself is making me flare.
    ~Ashley



    (LithEruiel is my name in Elvish...sort of.)

    30 year old RN with IC, diagnosed September 2008. Diagnosed with PFD at some point later!

    Current treatments/meds:
    Elmiron 100mg 3x a day
    Continuous birth control
    Diflucan 100mg or 150mg way too often for a normal human being
    Symicort & Pro-Air for asthma
    Synthroid 0.25 mcg for hypothyroid

    Failed:
    Ditropan, Vesicare, Gelnique, Urispas, Benadryl, Hydroxyzine, Cystoprotek, Cysta-Q

  8. #8
    ICN Member
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    CystoProtek started improving me within the first week, and continues to improve things, now about 9 months later.

    Stay on the diet whether or not you think it's helping. Odds are that it's helping, and you need that help!
    -Laura
    56 years old
    Diagnosed Feb 2009, but had IC for years before that;
    Also horribly progressive, painful, severe vascular rosacea.

    Stuff that helps me--
    - the IC diet
    - Prelief
    - CystoProtek (wonderful stuff, highly recommended)
    - Vagifem estrogen inserts- every other day
    - Remeron (Mirtazapine)- 30 mg nightly for IC pain, also for constant menopausal flushing
    - Clonidine- 50 mcg every 8 hours for painful facial flushing
    - Zebeta (Bisoprolol)- 5 mg nightly- Beta Blocker for mild hypertension
    - Hydroxyzine- antihistamine for IC

  9. #9
    ICN Member musiclover's Avatar
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    Hey Laura, that's good to hear. Lithuriel, I wanted to say, today I'm feeling a bit better again so I do think the Cytoprotek is helping. It sounds to me like your bladder is reacting to what's going on inside it, so it is probably contracting or something making you feel you MUST GO! Stick with the CP because as you heal, your bladder will probably stop feeling this urgent need to expel the poison! That's how it feels to me anyway. And since Elmiron helped you otherwise, it probably will help your frequency eventually. They say it takes a long while for Elmiron to help with that symptom. yay. That's probably why I feel it hasn't done one ounce of good for me yet. But I'm going to stick with it. I hate that these meds take so long. But from what I have read CP works much faster than Elmiron, so it will be nice if it can help a little more in these coming weeks. Even if it's not like a cure. Just to be semi-normal.
    Update! Feeling much better these days and no longer on any meds!

    Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.

    Things that helped me the most: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day).

    Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax, Hydroxyzine (50mg), Alesse Birth control (this helped my period flares when my symptoms used to be bad), PTNS (I think this helped).

    [/COLOR][/SIZE][/FONT]

  10. #10
    ICN Member LithEruiel's Avatar
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    I've been on Elmiron almost a year though (will be a year early in October). I know some people say it works more beyond a year, but I just don't think anything is going to touch my frequency. I feel like my bladder has shrunk. I haven't had cysto/hydro (and can't afford it) so I don't know if I have a small bladder now or not. I dunno. Thanks for your suggestions.
    ~Ashley



    (LithEruiel is my name in Elvish...sort of.)

    30 year old RN with IC, diagnosed September 2008. Diagnosed with PFD at some point later!

    Current treatments/meds:
    Elmiron 100mg 3x a day
    Continuous birth control
    Diflucan 100mg or 150mg way too often for a normal human being
    Symicort & Pro-Air for asthma
    Synthroid 0.25 mcg for hypothyroid

    Failed:
    Ditropan, Vesicare, Gelnique, Urispas, Benadryl, Hydroxyzine, Cystoprotek, Cysta-Q

  11. #11
    ICN Member musiclover's Avatar
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    Yeah that's a long time Sorry.

    I share your frustration.
    Update! Feeling much better these days and no longer on any meds!

    Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.

    Things that helped me the most: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day).

    Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax, Hydroxyzine (50mg), Alesse Birth control (this helped my period flares when my symptoms used to be bad), PTNS (I think this helped).

    [/COLOR][/SIZE][/FONT]

  12. #12
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    The vesicare and all OAB Meds made things so much worse. It was like I was sitting on the toilet for 3 mins before I could get anything out and then once I did, it was like a drop. It did not work for me.

    I am trying the Elmiron again for the second time the first time I only took it for two months. I feel your pain my heart really goes out to you as I think the same things as you everyday.

    hang in I am sure there has got to be a cure just around the corner for US! and see if you can use a heating pad, that might help a little to calm down the spasming.

    As for me. I have bad frquency too but I got the interstim and I think that my frequency has improved somewhat.
    Angela

    Diagnosed in 3/09
    Symptoms since 8/08

    I have found nothing that has worked for me and I have tried:

    Elmiron (2 mos)
    Elavil (2 mos)
    Vesicare
    Detrol
    Toviaz
    Hydrodistention
    DSMO instills
    Markain cocktail instills
    And I have had the Interstim implanted.

  13. #13
    ICN Member LithEruiel's Avatar
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    Yeah, I stopped taking the Vesicare last night and went back to my sad little Ditropan 5 mg. I feel slightly better, but I think the Vesicare is still in my system. Not sure what's going on...I'm not having any muscle tightness or pain like I was having with the Ditropan twice a day, but I am definitely retaining. I drank a liter bottle of Evian and then a small bottle of Evian in about a two hour time period and not much has come out...usually water goes right through me. I also feel like the Vesicare is irritating my bladder, but I don't know if it's just the retained urine or something in the med that's irritating. I guess OAB meds are not the answer for me...at all...

    I have one of those microwave heat things with the "sand" in them. It's definitely been the only way I've been able to sleep sometimes, especially before I was diagnosed.

    Thanks for your kind words
    ~Ashley



    (LithEruiel is my name in Elvish...sort of.)

    30 year old RN with IC, diagnosed September 2008. Diagnosed with PFD at some point later!

    Current treatments/meds:
    Elmiron 100mg 3x a day
    Continuous birth control
    Diflucan 100mg or 150mg way too often for a normal human being
    Symicort & Pro-Air for asthma
    Synthroid 0.25 mcg for hypothyroid

    Failed:
    Ditropan, Vesicare, Gelnique, Urispas, Benadryl, Hydroxyzine, Cystoprotek, Cysta-Q

  14. #14
    ICN Member
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    no problem, you should read my post about the Toviaz that I just put up, it sounds like what you were just going through
    Angela

    Diagnosed in 3/09
    Symptoms since 8/08

    I have found nothing that has worked for me and I have tried:

    Elmiron (2 mos)
    Elavil (2 mos)
    Vesicare
    Detrol
    Toviaz
    Hydrodistention
    DSMO instills
    Markain cocktail instills
    And I have had the Interstim implanted.

  15. #15
    ICN Member
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    LithEruiel - When this IC wonderfulness started for me, I was put on 5 mg of Vesicare. This helped a bit, but I still had the extreme frequency (which I later realized was bladder spasms), so I went up to 10 mg.

    After a month or two I started retaining on the 10, so I went back to the 5 mg, and then I stopped altogether. I found that each time I switched or stopped/ started the Vesicare, I usually saw results within a few days max. From what I've read even the OAB meds work so differently for everyone, so its the old trial and error.. so frustrating, I know.

    Musiclover - hang in there! I've read at least a few posts saying that folks started feeling improvements at the one year mark, so there is time yet for the Elmiron.

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