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  1. #1
    ICN Member
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    How Long for Elmiron?

    I just finished 2 months of Elmiron and I have to say that I have been feeling great. I just got over my period which is normally a horrible time for me, but this month, it wasn't even bad at all. Just a few weeks ago, I had an instillation. I had an alcoholic drink on Friday and was fine. I also ate something that I didn't realize had tomatoes in it and was fine. I am wondering if the Elmiron finally kicked in? I don't want to jinx myself, but I actually feel normal. I sleep at night and my frequency and urgency seems to have gone down. I don't fear making it through the work day. I am wondering if I am going through a good spell or if possibly the medicine is finally working. It used to be that every day was torture. A simple car ride to Target could be painful. I really really hope some of these feelings are permanent.

  2. #2
    Forum Manager ICNDonna's Avatar
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    Re: How Long for Elmiron?

    I hope so too. I do encourage you to keep taking Elmiron even after you feel good --- and stick with the diet --- too many people start to feel good, then stop treatments and go back to square one.


    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/patient-r...on/#icfoodlist

    You'll find my story at: http://www.ic-network.com/conditions...tories/page/6/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  3. #3
    ICN Member ICKIRSTI's Avatar
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    Re: How Long for Elmiron?

    Yes, indeed. I had great luck with Elmiron for many, many years. You must keep taking it though for lasting results! So happy to hear the great news! I pray your treatment continues to be a great success. Warmest regards!
    Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

    Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

    Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

  4. #4
    ICN Member rainbowgirl's Avatar
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    Re: How Long for Elmiron?

    that is brilliant news princessbunny. please keep us posted how it's going. i'm STILL waiting to hear whether they will let me take 6 months trial here; it's starting to look doubtful. it's so unfair. my IC has been raging past few weeks, in spite of dietary changes and acupuncture. starting to feel desperate.
    I am in my mid thirties and single mum to two beautiful children. Bladder symptoms suddenly appeared November 2012 following severe ill health with cryptosporidium and gastritis.Apparent UTI never cleared up; ten different antibiotics later had rigid cystoscopy with hydrodistention and bladder biopsy. Diagnosed with IC April 2013 following discovery of chronic inflammation and mast cells++.Daily severe pain, frequency, urgency and urinary hesitancy.You can find me at [COLOR="#000080"]http://www.strugglingtosurvive35.blogspot.co.uk - or sometimes .com

    Current meds: just discontinued Elmiron, due to rectal bleed, plus hair loss and total exhaustion. was only on it a month. v upset.Fentanyl 50mg per 3 days pain patches (trying to reduce), Tramadol 150mg emergency top up, Diazepam 5mg if needed. Zolpidem 10mg per night. Past meds: Many a/bs including Ciprofloxacin and Cephalexin. Co-codamol,codeine, other mild painkillers. Cetirizine, Cimetidine, Nortriptyline and Hydroxyzine, all discontinued.

    Self-help: Avoiding dietary triggers, rest, hot baths, hot water bottles, cool packs, trying to reduce stress. writing my blog sometimes helps, playing with my children.
    Alternative therapy: reflexology and massage. Acupuncture limited help.
    Supplements omega 3 (flaxseed), multivit (low acid), aloe vera. Glucosamine and Chondointrin. MSM. L-arginine. NEXT STEP: BROTH CULTURE TO SEE WHAT NASTIES ARE REALLY HIDING IN MY BLADDER

  5. #5
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    Re: How Long for Elmiron?

    This is great news I just started Elmiron 2 weeks ago and was told it could take up to 6 months to kick in. My periods are also a really bad time for me the first day of the cycle I CAN'T work I am just lucky I have an extremely understanding boss. This week alone I have missed 2 half days at work because sitting at a desk is very uncomfortable for me. I hope this is a permanent thing for you and was also told to stick with the medication even after it takes effect.

  6. #6
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    Re: How Long for Elmiron?

    that's great!

    I'm on month 6 of elmiron, and i haven't noticed much help. I'm probably in the 6mo to a year group. I have been feeling ok this week, but I flare horribly with my monthly and with stress.
    ----------------------------------------------------
    My blog on IC, adoption, and academia: the garlic whisperer

    Diagnosed Jan 2013. Currently taking:

    200mg Elmiron morning and night
    25mg Elavil at night (no drowsiness or weight gain)
    culturelle in the morning
    SLIT drops for allergies (environmental) 3 drops/night under the tongue
    zyrtec 24 hour nightly (recommended by uro)
    Instillations 3x/week: Parson's Solution
    uribel and prelief as needed

    Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
    No longer need them, so I only take them during flares.

  7. #7
    ICN Member rainbowgirl's Avatar
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    Re: How Long for Elmiron?

    Just wondering how people are going with Elmiron.

    I finally got the six month trial here in the UK approved; which means the National Health will fund me to take it for six months to see if it has any effect or not.

    I got very scared about all the side effects before taking it , but then I thought about it and I can't see any other way at the moment, so I started it just less than a week ago.

    Would be very interested in anyone else's stories and experiences. I did have a long thread on here about my own experiences trying to get the Elmiron but the thread was steered in the wrong direction and it isn't on the board anymore; the important thing now isn't so much the history, though, but the future.

    I am really low and depressed from having IC for fifteen months now. You can read my story on my blog (see link below) and I'd be really happy to hear from anyone who can empathise. I am a single mum of two little children and face daily pain which is often disabling despite a 75ml Fentanyl patch - and plenty of lectures from those around me about whether I'm addicted to the painkillers! I can't help saying/ feeling that this is not the point, but then you would have to suffer with chronic pain to understand and appreciate that. Perhaps some of you can emapthise.

    Also, I read Angela Kilmartin's book. Can it really be true that we can all be suffering from mycoplasma and a course of doxycycline would cure us all?? I feel quite sceptical as I'm sure when my biopsies were done they tested for mycoplasma and ureaplasma. I'm also sure I pushed to take an a/b that would cover these when I was having all my a/b therapy almost a year ago, and they didn't do a thing. Anyway, I am going to double check, but surely she can't have 'the truth' - where are the clinical trials to back it up??

    I am still very hesitant to do instalations as here in the UK you can't do them yourself (at least not where I am) so it's my local hospital, which is dirty and I worry would give me an infection as likely as provide any pain relief.

    So the Elmiron feels like my last resort . The acupuncture has been comforting but really done little for my bladder. It is a very dark time. I'd love to hear from some of you and I'm so glad for those of you who are finding success in treatments xxx
    I am in my mid thirties and single mum to two beautiful children. Bladder symptoms suddenly appeared November 2012 following severe ill health with cryptosporidium and gastritis.Apparent UTI never cleared up; ten different antibiotics later had rigid cystoscopy with hydrodistention and bladder biopsy. Diagnosed with IC April 2013 following discovery of chronic inflammation and mast cells++.Daily severe pain, frequency, urgency and urinary hesitancy.You can find me at [COLOR="#000080"]http://www.strugglingtosurvive35.blogspot.co.uk - or sometimes .com

    Current meds: just discontinued Elmiron, due to rectal bleed, plus hair loss and total exhaustion. was only on it a month. v upset.Fentanyl 50mg per 3 days pain patches (trying to reduce), Tramadol 150mg emergency top up, Diazepam 5mg if needed. Zolpidem 10mg per night. Past meds: Many a/bs including Ciprofloxacin and Cephalexin. Co-codamol,codeine, other mild painkillers. Cetirizine, Cimetidine, Nortriptyline and Hydroxyzine, all discontinued.

    Self-help: Avoiding dietary triggers, rest, hot baths, hot water bottles, cool packs, trying to reduce stress. writing my blog sometimes helps, playing with my children.
    Alternative therapy: reflexology and massage. Acupuncture limited help.
    Supplements omega 3 (flaxseed), multivit (low acid), aloe vera. Glucosamine and Chondointrin. MSM. L-arginine. NEXT STEP: BROTH CULTURE TO SEE WHAT NASTIES ARE REALLY HIDING IN MY BLADDER

  8. #8
    Forum Manager ICNDonna's Avatar
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    Re: How Long for Elmiron?

    I think the side effect that worries more than any other with elmiron is the fear of hair loss. If this is something that worries you, I suggest you do a hairbrush test very soon. What you do is to use a hair free brush and brush your hair thoroughly. Then comb the hair out of the brush and store it in a plastic sandwich bag. Then if later on you feel you might be losing hair, you can do another brush test and compare the result with the hair saved in the sandwich bag.

    I hope elmiron will help you. I know you've had a terrible time.

    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/patient-r...on/#icfoodlist

    You'll find my story at: http://www.ic-network.com/conditions...tories/page/6/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  9. #9
    ICN Member
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    Re: How Long for Elmiron?

    my elmiron is finally starting to kick in. it's been like a switch has been flipped. didn't even flare this period!

    I was worried about the side effects too, but I did the hairbrush test and haven't lost any more hair than usual shedding.
    ----------------------------------------------------
    My blog on IC, adoption, and academia: the garlic whisperer

    Diagnosed Jan 2013. Currently taking:

    200mg Elmiron morning and night
    25mg Elavil at night (no drowsiness or weight gain)
    culturelle in the morning
    SLIT drops for allergies (environmental) 3 drops/night under the tongue
    zyrtec 24 hour nightly (recommended by uro)
    Instillations 3x/week: Parson's Solution
    uribel and prelief as needed

    Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
    No longer need them, so I only take them during flares.

  10. #10
    ICN Member rainbowgirl's Avatar
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    Re: How Long for Elmiron?

    Quote Originally Posted by miniguinea73 View Post
    my elmiron is finally starting to kick in. it's been like a switch has been flipped. didn't even flare this period!

    I was worried about the side effects too, but I did the hairbrush test and haven't lost any more hair than usual shedding.
    That is brilliant news miniguinea. Am really happy for you.

    Am worried as on day 10 of Elmiron I feel absolutely like death warmed up. I honestly don't know if it is this drug or something else. Am really not sure what to do. Past few days have barely been able to move; some single mum I am!!!
    I am in my mid thirties and single mum to two beautiful children. Bladder symptoms suddenly appeared November 2012 following severe ill health with cryptosporidium and gastritis.Apparent UTI never cleared up; ten different antibiotics later had rigid cystoscopy with hydrodistention and bladder biopsy. Diagnosed with IC April 2013 following discovery of chronic inflammation and mast cells++.Daily severe pain, frequency, urgency and urinary hesitancy.You can find me at [COLOR="#000080"]http://www.strugglingtosurvive35.blogspot.co.uk - or sometimes .com

    Current meds: just discontinued Elmiron, due to rectal bleed, plus hair loss and total exhaustion. was only on it a month. v upset.Fentanyl 50mg per 3 days pain patches (trying to reduce), Tramadol 150mg emergency top up, Diazepam 5mg if needed. Zolpidem 10mg per night. Past meds: Many a/bs including Ciprofloxacin and Cephalexin. Co-codamol,codeine, other mild painkillers. Cetirizine, Cimetidine, Nortriptyline and Hydroxyzine, all discontinued.

    Self-help: Avoiding dietary triggers, rest, hot baths, hot water bottles, cool packs, trying to reduce stress. writing my blog sometimes helps, playing with my children.
    Alternative therapy: reflexology and massage. Acupuncture limited help.
    Supplements omega 3 (flaxseed), multivit (low acid), aloe vera. Glucosamine and Chondointrin. MSM. L-arginine. NEXT STEP: BROTH CULTURE TO SEE WHAT NASTIES ARE REALLY HIDING IN MY BLADDER

  11. #11
    ICN Member rainbowgirl's Avatar
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    Re: How Long for Elmiron?

    Quote Originally Posted by ICNDonna View Post
    I think the side effect that worries more than any other with elmiron is the fear of hair loss. If this is something that worries you, I suggest you do a hairbrush test very soon. What you do is to use a hair free brush and brush your hair thoroughly. Then comb the hair out of the brush and store it in a plastic sandwich bag. Then if later on you feel you might be losing hair, you can do another brush test and compare the result with the hair saved in the sandwich bag.

    I hope elmiron will help you. I know you've had a terrible time.

    Donna
    Thank you Donna. I am less worried about the Elmiron causing hair loss than it making my whole system feel poisoned. But I must do this hairbrush test, it is a good idea. Thank you for your continued support xx
    I am in my mid thirties and single mum to two beautiful children. Bladder symptoms suddenly appeared November 2012 following severe ill health with cryptosporidium and gastritis.Apparent UTI never cleared up; ten different antibiotics later had rigid cystoscopy with hydrodistention and bladder biopsy. Diagnosed with IC April 2013 following discovery of chronic inflammation and mast cells++.Daily severe pain, frequency, urgency and urinary hesitancy.You can find me at [COLOR="#000080"]http://www.strugglingtosurvive35.blogspot.co.uk - or sometimes .com

    Current meds: just discontinued Elmiron, due to rectal bleed, plus hair loss and total exhaustion. was only on it a month. v upset.Fentanyl 50mg per 3 days pain patches (trying to reduce), Tramadol 150mg emergency top up, Diazepam 5mg if needed. Zolpidem 10mg per night. Past meds: Many a/bs including Ciprofloxacin and Cephalexin. Co-codamol,codeine, other mild painkillers. Cetirizine, Cimetidine, Nortriptyline and Hydroxyzine, all discontinued.

    Self-help: Avoiding dietary triggers, rest, hot baths, hot water bottles, cool packs, trying to reduce stress. writing my blog sometimes helps, playing with my children.
    Alternative therapy: reflexology and massage. Acupuncture limited help.
    Supplements omega 3 (flaxseed), multivit (low acid), aloe vera. Glucosamine and Chondointrin. MSM. L-arginine. NEXT STEP: BROTH CULTURE TO SEE WHAT NASTIES ARE REALLY HIDING IN MY BLADDER

  12. #12
    ICN Member Pernille's Avatar
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    Re: How Long for Elmiron?

    Congrats! i am so happy for you. By the way, I think it was you who recommended kale on pizza. I haven't tried it on pizza, but I bought wonderful kale at the farmers market and it's delicious!
    Pernille

  13. #13
    ICN Member
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    Re: How Long for Elmiron?

    I love kale. I eat tons of it. I just made a kale, potato, and navy bean soup. so good.
    ----------------------------------------------------
    My blog on IC, adoption, and academia: the garlic whisperer

    Diagnosed Jan 2013. Currently taking:

    200mg Elmiron morning and night
    25mg Elavil at night (no drowsiness or weight gain)
    culturelle in the morning
    SLIT drops for allergies (environmental) 3 drops/night under the tongue
    zyrtec 24 hour nightly (recommended by uro)
    Instillations 3x/week: Parson's Solution
    uribel and prelief as needed

    Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
    No longer need them, so I only take them during flares.

  14. #14
    ICN Member Yukoner's Avatar
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    Re: How Long for Elmiron?

    Quote Originally Posted by miniguinea73 View Post
    my elmiron is finally starting to kick in. it's been like a switch has been flipped. didn't even flare this period!
    Glad to hear. The experience was the same for me, after months of dull non-stop pain, literally a few days of Elmiron and poof, pain gone. Unfortunately, I do get side effects, which sucks.
    SYMPTOMS: Urgency/burning sensation since mid-2012 (no discharge ever), constant dull pain in lower left side. Infrequent spasms that feel as if someone is squeezing the organs inside me, ranges from lower left side right down to the end of the urethra.

    TESTS: Nothing significant showed in CBC, CHEM12, LFT, KFT, PSA, leukocytes, PFT, urinalysis, urine cultures, ultrasound, abdominal CT scan w/ and w/o contrast dye, cystoscopy. Urinalysis always shows 1+ RBC.

    MEDICATIONS: Elmiron 100mg x 2 times daily.

    PREVIOUS CONDITIONS: both dientamoeba fragilis and nanophyetus salmincola parasitic infections (the first cured with metronidazole and doxycycline, the second cured with iodoquinol and praziquantel). High allergy to carpet mites. Diagnosed with Alpha Thalassemia Minor.

  15. #15
    ICN Member rainbowgirl's Avatar
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    Re: How Long for Elmiron?

    Quote Originally Posted by Yukoner View Post
    Glad to hear. The experience was the same for me, after months of dull non-stop pain, literally a few days of Elmiron and poof, pain gone. Unfortunately, I do get side effects, which sucks.
    are there any informal statistics on this site, of how many women Elmiron works for? I know the studies say around a third.... but any other anecdotal evidence??
    I am in my mid thirties and single mum to two beautiful children. Bladder symptoms suddenly appeared November 2012 following severe ill health with cryptosporidium and gastritis.Apparent UTI never cleared up; ten different antibiotics later had rigid cystoscopy with hydrodistention and bladder biopsy. Diagnosed with IC April 2013 following discovery of chronic inflammation and mast cells++.Daily severe pain, frequency, urgency and urinary hesitancy.You can find me at [COLOR="#000080"]http://www.strugglingtosurvive35.blogspot.co.uk - or sometimes .com

    Current meds: just discontinued Elmiron, due to rectal bleed, plus hair loss and total exhaustion. was only on it a month. v upset.Fentanyl 50mg per 3 days pain patches (trying to reduce), Tramadol 150mg emergency top up, Diazepam 5mg if needed. Zolpidem 10mg per night. Past meds: Many a/bs including Ciprofloxacin and Cephalexin. Co-codamol,codeine, other mild painkillers. Cetirizine, Cimetidine, Nortriptyline and Hydroxyzine, all discontinued.

    Self-help: Avoiding dietary triggers, rest, hot baths, hot water bottles, cool packs, trying to reduce stress. writing my blog sometimes helps, playing with my children.
    Alternative therapy: reflexology and massage. Acupuncture limited help.
    Supplements omega 3 (flaxseed), multivit (low acid), aloe vera. Glucosamine and Chondointrin. MSM. L-arginine. NEXT STEP: BROTH CULTURE TO SEE WHAT NASTIES ARE REALLY HIDING IN MY BLADDER

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