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  • elmiron + bladder photos

    I have been on Elmiron nearly a year now but had a second hydro around Christmas time. Didn't see the pictures from it till last week and if anything I think the petechial hemorraghes is worse and have 'congestion' according to the nurse.
    My first hydro was in 2005 before any treatments. Since then had cystistat, and after that been on Elmiron since.


    I thought Elmiron would make things at least look better as it is meant to coat the bladder wall? Can I have been taking it for a year and it have no effect??
    IC diagnosis: Aug 2005
    Symptoms: Urgency, urge and irritation and urethral symptoms
    Flareup for 1 year til July 2007 (had constant urge and pain et al....)

    Elmiron 100mg 3x daily April 2006 - present
    Enablex 7.5mg nightly Sep 2007 -present
    Atarax, Elavil 10mg nightly (Dec 2007)
    Acupuncture - November 2007 - present

    (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)

  • #2
    wHAT A bummer! Sorry, I can't answer your question, but do you feel any better? I can't tell if the elmiron is doing anything for me. I've been on it 8 months.

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    • #3
      Dose

      You might want to ask your Uro about increasing the dose? My new Uro put me on 6 a day, saying that so little Elmiron gets into the system that newer research seems to hold out for a larger dose. I have done well on it, and hope you improve.
      Sammi

      Sammi

      Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
      Diagnosis: IC, PFD (both in remission)

      Comment


      • #4
        I don't understand how things aren't getting better. Having had cystistat (like elmiron but an instillation) and elmiron, antihistamines and elavil, have targeted all part of IC.
        The only thing I can think of is am now only on elavil and elmiron as I tried antihistamines for 4 months without any relief.
        I didn't add it on top of elavil as elavil has antihistamine properties and elmiron is said to have mast cell inhibitory factors.

        Also had a DMSO treatment and thinking about more although pain unbelievable. Couldn't move for 3/4 days yet dmso is meant to release histamine so maybe once histamine is out, could see relief?

        my coping so far has been to tackle parts of IC - multimodal approach as monotherapy didn't help. (although had relief for 6 months or so at first with cystistat and elmiron then flare flare flare since!)

        I know my IC is worse due to symptoms and the photos, but was hoping 'inside' things would be better. and why don't I respond to anything??? am sooooo disheartened and depressed that a year ago was an active teacher coping with IC through meds, diet, heat pad etc... and now a year later have been destroyed through this. Pain and urge is soo bad that somedays can just about shower and eat and even on bearable days hardly get anything done and can't function - living with parents and relying on them to help me. Can't do normal food shopping, cleaning - nothing. Can just exist. Sorry wrong section, to vent I know.
        Am just disheartened. Where I live, there aren't many options left for me apart from DMSO.
        IC diagnosis: Aug 2005
        Symptoms: Urgency, urge and irritation and urethral symptoms
        Flareup for 1 year til July 2007 (had constant urge and pain et al....)

        Elmiron 100mg 3x daily April 2006 - present
        Enablex 7.5mg nightly Sep 2007 -present
        Atarax, Elavil 10mg nightly (Dec 2007)
        Acupuncture - November 2007 - present

        (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)

        Comment


        • #5
          Sweetangel

          So very sorry to hear of your suffering. Hopefully the higher dose Elavil will help, and perhaps a higher dose Elmiron also. A better day is coming, you are doing all the right things.
          Sammi

          Sammi

          Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
          Diagnosis: IC, PFD (both in remission)

          Comment


          • #6
            Perhaps the heparin instillations would help? The Elmiron did nothing for me after 3 years. For overall comfort, maybe reading some of the pelvic floor posts would help in terms of how the muscles can add to discomfort that's already there due to bladder lining irritation (if that makes sense).

            Hugs,

            Diana.

            Comment


            • #7
              Well it is true that Elmiron does not work for everyone and all of us seem to be different with our symptoms etc.

              Did you feel Elmiron ever helped you? You mentioned recent symptoms, are you perhaps going through a long flare at this time? Sometimes diet or other things might need to be adjusted. Sometimes flares can happen for no apparent reason and even on meds that have helped before and might take awhile to settle back down.

              One thing about Elmiron is- I'm sure there is no study or evidence that shows that your bladder will/or should look better in pictures after you are on it. They say it can coat the bladder and help some people by protecting the layer from irritants and some doctors believe the protective layer MAY then help promote healing, but not necessarily. I think you have to go with your symptoms when evaluating the Elmiron. Sit with your doctor-Ask yourself . Has it helped any of my symptoms? Is it still helping? You can talk to your doctor about not taking it for a little while and see if your symptoms are worse without it? That way you might know if it is helping at all? You would have to discuss this with your doctor of course.

              I am very sorry you are having such a hard time, it is good to see that you are trying other things because you are obviously still having symptoms.

              Don't give up, you will find some relief, and you will find the right combination of drugs.

              If you are having trouble with day to day pain also, please talk to your doctor about pain relief. There are many pain killers, that can help you so that until you find some relief you are better able to function. Sometimes people even have to take these long term. Some people take them everyday all day long. I don't know too much about this, but you can do a search on here, or post a topic. I know there are many people on this site that take prescription pain meds everday.

              Be blunt with your doctor, tell him what you have stated here, that you are depressed that you are in so much pain that you can barely get dressed and get nothing done all day. If your doctor is uncomfortable with prescribing pain meds, or just gives you a few for a few days , you can go see a chronic pain specialist.

              Good luck.
              Diagnosed with IC in 9/2005,
              Currently doing good, taking breaks from Elmiron, reduced amount.

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