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4 Weeks of Instills and No Improvement -- Give Up?

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  • #1

    4 Weeks of Instills and No Improvement -- Give Up?

    I'm a recently diagnosed IC patient, and I've been doing weekly bladder cocktails (not sure what meds it contains) for the past month or so. Last week I changed to bi-weekly, so I've done 5 instills total and have seen no improvement of my symptoms.

    For those of you who have done instills before, did you see improvement this late in the treatment? It seems like most people find relief after the first 3 instills, so I'm wondering if it just doesn't work for me, and I should give up. Has anyone had success after the week 4? Is there hope, or should I try something else?

    Thanks for your help!!
    Tags: None
  • #2
    Hello and Welcome, I started with instill whiched helped for awhile, then the pain came again, my uro and I decided my next step was a hydro which I had yesterday and I'm feeling good at the moment. You need to speak with your uro and let him or her know that your instills aren't helping. We are all different in what helps and you may need a different treatment. Good luck and I hope you find relief soon.
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily

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    • #3
      Definitely, don't give up. It took me months to bi monthly instills to eventually feel better. I do the instills at home now for almost 3 years. I still get flares during my period, but compared to where I was at 3 years ago, I have no complaints. I was diagnosed in 2004 and had lots of burning on/off for 3 years and 3 urologists later. I have to be consistent though.
      bunnykinb

      6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

      tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

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      • #4
        Don't give up yet! It took me about 20 instills before I noticed a huge different. The first instill I had - I got about 2 hours relief - just took the edge - by the time I had the 20th instill - I was getting a week of relief. Don't give up yet. Have you tried uracyst? That was helpful for me.

        Wizbe

        Current Meds:
        1 Elmiron 100mg 3x a day
        1 Cimetidine 300mg 2x a day
        4 Gabapentin 300mg 3x a day (3600mg)
        1 - 2 Atarax 25mg at bedtime
        1 baclofen 10mg 3x a day as needed
        200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
        2 belladonna and opium suppositories as needed for pain daily.
        Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

        I have tried but failed -
        lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
        [/I]

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        • #5
          I suggest you find out what's in the solution being instilled. Sometimes it takes doing instillations on a regular basis to feel better. Many ICers do their own at home.

          Warm hugs,
          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          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.           [3MG]

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

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          • #6
            I had the DMSO instills for 6 weeks, which I know are different than the self instilled cocktails but still I thought I'd share my experience. I'd also read in Dr.Moldwin's book that if I'm not seeing any benefit after the 4th session it's probably not worth continuing, but I'm glad I stuck with it. I didn't see any improvements through the course of the treatment. I started feeling 100% better about a week after completion but there were other factors involved (being on vacation, no work or traffic stress, being active, being in a good mood, possibly healthier food and more alkaline water where I was vacationing) . After vacation some of my symptoms came back but a lot milder than before. My doctor says that's not typical and it's hard to say what effect the DMSO had in my sudden improvement, but even if it was just a little bit I'd do it all over again.

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