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  • I have beaten IC...for now

    (Editors Note - Interstitial cystitis is also found in cats and this posting shares one persons success in using some ingredients, particularly quercetin & glucosamine, that she first found suggested for cats. However, these have also been used for humans and are found in the supplements (Cystoprotek, etc.) popular for bladder symptoms. You can learn more about these supplements in the ICN Guest Lecture series and the ICN Shop. Please note that you should NEVER use supplements created for animals because they will not have the same safety profile. It is always important to use supplements created and tested specifically for humans. - Jill O.)


    I first joined this message board almost 2 years ago now, shortly after my diagnosis. I am one of the "lucky few" men who has IC. I used to be in such pain it would keep me up all night, or I would have to constantly take pain killers to cope. My urologist prescribed Elmiron. It took time, but it eventually started to work. However, the Elmiron had its own side effects, such as hair loss and weight gain. I could not take the bladder instillations. The feeling of that tube sliding down my urethra was more than I could bear. I knew there had to be a better way of coping with this disease.

    I started reading everything I could about IC and its effect on men. Unfortunately, most of the info out there is for women, and well, we're just built differently.

    Since i didn't want to trade one drug for another, I started studying nutritional supplements and herbal remedies. I'm not somebody who is into alternative medicine, but at this point i was willing to give it a try. I tried colostrum, aloe vera...nothing worked. I resigned myself to the fact I would be taking Elmiron for the rest of my life.

    Then, one day, my cat got sick. She couldn't keep down any food or water and was losing weight rapidly. It later turned out she had cancer. Anyway, while I was online searching for my cat's symptoms and trying to find ways to make her more comfortable, I came across an article about cats and urinary tract problems.

    It seems that bladder and urinary tract infections are extremely common in cats. They experience what can be described as IC-type symptoms. Then, I came across the veterinarian-prescribed treatment: Glucosimine with MSM. The Glucosimine helps rebuild the mucous lining of the bladder, which is the protective lining of the bladder...the one that seems to be defective in IC patients. I thought, "what the hell". If it's good enough for my cat, I'll give it a try.

    I went to my local health food store and bought two bottles: Glucosimine with MSM, and Quercitin, the active ingredient in Cysti Q. Cysti Q has receive a lot of positive reviews in helping patients with IC. The Quercitin contains compounds called bioflavinoids which help boost the immune system. I had read research which indicated some doctors feel IC is some type of autoimmune disease, so I figured I would take both capsules as a sort of one-two punch.

    I didn't know what to expect really. I paid a total of 21 dollars for both bottles of pills...much cheaper than my 30-day supply of Elmiron. At first, I took the Glucosimine, Quercitin and the Elmiron together. After a week, I started to feel much better. At the end of two weeks, I ran out of Elmiron, and didn't bother to buy more. Four weeks after running out of Elmiron and taking nothing but the supplements, I was pain-free.

    I haven't felt this "normal" in two years. I'm not saying I'm cured, or in remission, or that this will work for everybody. But, it is working for me. The real test for me was my diet. Could I eat anything I wanted?

    I started slowly at first. I started eating peanuts, to see how I would react. The last time I ate peanuts was two years ago, and I was in a flare that lasted three days. This time...nothing. I ate and drank other things I previously could not: oranges, salsa, hot sauce, beer...anything I could not eat previously because it caused mind-numbing pain. I was fine.

    I don't recommend everybody suddenly stop taking their medications, but it might be worth a try to add Quercitin and/or Glucosimine with MSM to your regimine (make sure neither one contains any citrus. That defeats the purpose). If it helps anyone else the way it has apparently helped me, then I will feel like I have given something back to this board which has lent me so much support in the past.

    Good luck!

    FeelingJustFine
    formerly known as Trying2Cope
    Last edited by icnmgrjill; 01-31-2007, 12:52 PM.

  • #2
    Were you taking any other meds when you started taking the Glucosamine? I was just wondering..thanks
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Comment


    • #3
      Originally posted by leelee88
      Were you taking any other meds when you started taking the Glucosamine? I was just wondering..thanks
      As I mentioned in my post, I was taking Elmiron, plus the glucosimine and the Quercitin. I took all three for about two weeks. When I ran out of Elmiron, I took only the glucosimine and the Quercitin, which I still take. So far, so good.

      Comment


      • #4
        I googled the glucosamine/MSM thing, and found that MSM is chemically related to DMSO (a current instil used for IC). MSM is used to treat the inflammation from severe arthritis (which is an autoimmune disorder).

        Based on this info, MSM seems like a good thing to try. My question is : Why haven't any scientists thought of doing a trial on it? I mean if they are trying things like athsma drugs (I'm actually putting a lot of hope in this one!), and hyperbaric oxygen chambers (this kind of sounds silly to me), then why not a substance that is known to reduce inflammation??

        My theory is because there isn't much money to be made in the stuff. No one can patent it and become rich off it, so no one bothers to look into it, and that it quite sad.

        On a side note:
        I found a cat study myself! It's basically about why flares happen when you are under stress. Interestingly this was published in a Pakistani newspaper, but the researchers were American. I wish the North American media was as interested in this kind of stuff!
        here's the link for anyone who wants it,

        http://www.paktribune.com/news/index.shtml?159495

        ~*miz_sunshine87*~
        19 y/o student, salesperson, fashionista, future high school teacher. <3 to sing and travel. Dream job= cruise ship entertainer
        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
        My IC story- diagnosed at age 15 (Feb 2004), after approx. 6 mos of symptoms. Went into near complete remission following hydrodistention and introduction of meds. Feeling so good that I started skipping meds (bad idea). 1 week flare (May 2006). New flare November 2006-present.
        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
        My triggers- I'm not sure about food triggers, just started IC diet but so far doesn't seem to be doing much. Stress is a big trigger for me though. Both flares this year came during stressful times. I think that stress reduction will help me immensely (last flare went AWAY during vacation in Mexico when I was drinking margaritas like they were water;P).
        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
        Start of IC symptoms- Summer 2003 (after a UTI)
        Dx- February 2004, after hydrodistension (ouch!)

        Current treatments- Amytriptyline (25mg), Hydroxizine (25mg), MSM w/Glucosamine (1000mg,3x/day), quercetin (500mg, 2x/day), trying to stick to IC diet, prelief as needed.

        Previous treatments- Amytriptyline (10mg), Hydroxizine (10mg), Alesse (HBC)

        Comment


        • #5
          Wow! I am so happy for you. I remember reading all of your posts and really feeling so sad that you were having so much pain. I am now equally elated that you are doing so well! I'm so glad you came back and posted. This will give a lot of folks some much needed hope!
          hugs,
          Janie

          Comment


          • #6
            good for you. i'm trying glucosamine right now. how much is recommended?
            diagnosed IC Jan 2007 (though i feel i've had it mildly for years)
            frequent UTIs
            No frequency, just urgency and pain!


            tramadol 50mg twice a day. this stuff works good for nerve pain!!!! (update, i'm down to mostly one pill a day now!)

            Physical Therapy. if you have pelvic nerve pain or muscle pain, its worth a try. it helped me with the constant burning.

            TENS may help a little

            Cystoprotek might be helping as well. i'm getting better as time goes on and this could be why.

            fish oil, herbal teas, skullcap (might try passionflower for nerves) I'm not very diet sensitive.

            Went OFF elavil and nortryptiline (worked wonders, but didnt like the weight gain)

            Comment


            • #7
              thanks for such a positive post !! Makes good sense, wonder why the docs. haven't thought of this before...or are they just keeping us on all the meds to keep the pharmaceutical companies in business hmmmmmmm.....


              dx: IC, endometriosis,
              Meds: elmiron, atarax, elavil, flexirel, UTA, zanaflex,
              ditropan xl, prelief, instills as needed

              Comment


              • #8
                Ok,
                This is strange, I was taking Glucosamine because my muscles and bones were killing me and it helped alot!! I quit taking it around June of this year, and my IC symptoms started in July, well and plus I had a 4 kidney stones, but its just funny how I stopped Glucosamine and my IC started..
                Hugs
                Ronda

                ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                Link to Patient Handbook:
                http://www.ic-network.com/handbook/

                Diet Reference Sheet:
                http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                Meds I have Tried:
                Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                Lexapro< Bad reaction to this med!
                Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                Dx With IC in Nov 2006 with Hydro/Cysto
                Hydro/Cysto Caused Bladder to Rupture.

                Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                Comment


                • #9
                  It is great to hear of your success!!:woohoo:

                  The cat article was very interesting Miz.
                  past meds:
                  elmiron 100mg 3 x a day
                  cystoprotek 6 a day
                  elavil 10 mg
                  Femcon fe
                  non-shellfish vegetarian glucosamine HCL
                  750mg once a day

                  Comment


                  • #10
                    Originally posted by NicoleB
                    good for you. i'm trying glucosamine right now. how much is recommended?

                    Disclaimer: I am not in any way connected to the company which produces these supplements, and I have no connection whatsoever to the drug or nutriational supplement industry. These just happened to be the capsules available at my local health food store, and they are both made by the same company. I'm sure if you shopped around you could find similar products produced by other companies.


                    There have been some studies on quercetin and its effects on IC, but none on MSM or glucosamine, as far as I can tell.

                    The article about MSM says there is anecdotal evidence to suggest MSM helps those with IC, but it also says "IC also responds favorably to placebo, so it means nothing".

                    I wonder if they asked the cats who are prescribed the same supplements for feline IC and bladder problems?
                    Last edited by ICNDonna; 08-15-2007, 11:20 PM.

                    Comment


                    • #11
                      Also, here is a treatment given to cats with feline cystitis:



                      DON'T TAKE THIS YOURSELF. It's meant for animal consumption, not for use by humans. I'm just posting the link here for your information. Notice the paragraph which talks about how glucosamine is "a major component of the protective lining on the inside of the bladder".

                      Here is another treatment for cats with cystitis which contains both glucosamine and MSM:


                      Here is another post (not written by me) from someone who made the same discovery before I did. I wish I had seen this a year ago.

                      http://www.remedyfind.com/ratinglong...RatingID=33571

                      I wish these treatments would receive more research and study for its effect on human IC.
                      Last edited by SharonA; 04-01-2009, 04:34 AM.

                      Comment


                      • #12
                        chondritin

                        HEY Trying to cope,
                        I read with interest your post on your success w/ glucosamine msm. My chiropractor has been pushing me to try this stuff for years for a herniated disc. I finally bought some and began taking it for about a week. Then someone said that I should take it with chondritin and it would absorb faster. Well, I bought some and it killed my IC. I mean a major flare. The plain glucosamine msm didn't bother me at all. Anyways, I am anxious to see how this plays out. I am getting the quercetin today.
                        Wish me luck!!

                        Comment


                        • #13
                          Are they safe to take while pregnant? I'm sure the pregnant ladies ( I plan on being one soon) would love to know of something they can take while pregnant. I will have to check it out.

                          Comment


                          • #14
                            Originally posted by marymove
                            HEY Trying to cope,
                            I read with interest your post on your success w/ glucosamine msm. My chiropractor has been pushing me to try this stuff for years for a herniated disc. I finally bought some and began taking it for about a week. Then someone said that I should take it with chondritin and it would absorb faster. Well, I bought some and it killed my IC. I mean a major flare. The plain glucosamine msm didn't bother me at all. Anyways, I am anxious to see how this plays out. I am getting the quercetin today.
                            Wish me luck!!

                            Yes, I had read that condroitin can cause flares, so I haven't even tried that. Besides, there is no evidence, annecdotal or otherwise, that condroitin does anything for the bladder at all. I take only the glucosimine with MSM and the quercitin.

                            I should mention that I believe stress plays a major role in IC. I have just come off perhaps the most stressful weekend in my life, and I have experienced some IC pains the past couple of days. When I take the glucosimine it seems to go away. I have not taken Elmiron in more than a month.

                            Comment


                            • #15
                              Glad you found something to work. I tried the glucosamine, quercitin, msm, and it didnt work for me. I gave it several months too. IC is weird, certain things work for certain people. Out of all the drugs and herbs the only thing that has actually helped me are Dr. Snows regimen for IC. I believe someone on the IC board has posted his regimen.
                              [SIZE="1"][SIZE="2"]Please send all private messages to [email protected]. I do not check my ICN mailbox much.
                              Symptoms:
                              24/7 Bladder Pain, Mild Urgency and Frequency. Always tired and fatigued. Trouble sleeping due to bladder pain and trips to bathroom.
                              Allergies/Sensitivities:
                              Alcohol(big time!), Soft drinks. Foods dont bother me.
                              Current Supplements: None presently
                              Conventional medications!!!!!: Nuerontin, Hydroxyzine, Elmiron, Tramadol
                              Tried many other medications... will list later

                              Comment

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