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I have beaten IC...for now

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  • Originally posted by k.ozer View Post
    Trying2Cope - No, my uro didn't prescribe any pain meds at all. I want to try Elavil, which is supposed to help for pain, but she is one of those "let's try one thing at a time" doctors...I hate that. I was supposed to see her today, but got the appt. mixed up and it is next Wednesday. If she doesn't let me try the Elavil (and something for urethral pain, like Prosed/DS) on top of the Elmiron and Ditropan, then I am moving on to another doctor. I don't have the patience to deal with this IC anymore. This pain and frequencty I experience is NO way to live at all. It isn't even a life - And most doctors just don't get that. 99% of them have no idea, truly, what IC feels like. I can't/won't sit around and wait for the Elmiron to work...With only a 40% chance it will work in 6 months, nah...I need something else as well. (Oh, and it seems everytime I mention the word "pain" to her, she is always so quick to tell me to try aspirin...haha...Yeah, if only she knew what IC feels like...I should tell her to stuff that aspirin up her you-know-what and to take my symptoms more seriously...) I am giving her one more try...
    Elavil will help, but it is still not a pain medication. If you are suffering that much, you need a pain med. Tell your doctor you are in a tremendous amount of pain and you need something for it. Elavil is an antidepressent, so I wouldn't be quick to ask for that. If she refuses, you need to find another doctor, pronto.

    I used to have a doctor (not a urologist) who would come in the exam room and ask me questions off of a questionaire, and then prescribe my meds according to whatever the questionaire said. The last straw came when I went in for an annual physical, and she never actually touched me to examine me. How do you get a physical exam and the doctor doesn't lay a hand on you? I fired her and got a new doctor.

    Remember...the doctor WORKS for YOU, not the other way around.

    Comment


    • Gee, now that I've heard some stories here my doc doesn't look that bad after all. At least my uro gave me pain meds straight away, along of course with the Elavil, and Atarax etc...I am going to pray tonight for everyone to have a pain free evening.

      Comment


      • Trying It

        I just went to GNC and bought the Glucosamine/MSM and am taking them starting today. I think my flares might be tied to the birth control pill Yasmin (drsp is a diuretic!) I just found out...so I'm going off the pill and trying this too. Wish me luck. My flares are with urgency only. Anyone had any success with Glucosamine/MSM and urgency flares? If it works for me I'm going to quit Elmiron too. I hate being on so many meds if it's not necessary.
        Feel Free to Private Message me or E-mail me at
        [email protected]


        Altough I have had IC symptoms in the past my main issue is urinary retention - I am DESPERATE for an answer. I have to self-cath every time I go to the bathroom and have been since 2000. I feel helpless. Any advice would be appreciated.

        --------------------------------
        Interstim Trial on 12/21/07 - Didn't work so no InterStim for me

        Tried:

        Worked - Ditropan 15mg (and helps you sleep!) Off it now though

        Didn't Work - Vesicare, Enablex, Detrol

        Macrobid 50mg/day for to ward off infections
        Self-Cath (can't go on my own!) for retention
        Birth Control - Nothing- Quit Yasmin (It's a Diuretic!)

        Comment


        • Hopeful

          I was diagnosed with IC 6 years ago at the age of 25. Prior to being diagnosed, I had suffered thourgh a laundry list of inexplicable pains and conidtions. I was put on antibiotics every month for random symptoms that no doctor could diagnose, and at the time the only other med I was taking was birth control.

          One day, I switched birth control types and found myself in more pain that I could imagine. Shortly after, I got off of the bc's and have been healthy ever since with the exception of the IC. I think the hormones and antibiotics caused my IC.

          I take 50mg/day of Elavil and eat do whatever I want. The only bad side effect has been a little weight gain, so it forces me to keep in shape. I do have a prescription for Elmiron, but hair loss and the small chance that it may work has kept me form adding this to my routine.

          Has any other female had success with the Gluco/MSM and the Quercitin? I try to stay away from trying new things all of the time, but I am supposed to be taking Gluco anyway for a bad hip.

          Thanks!
          DEU

          Comment


          • It's Working For Me !

            Hi Friends-
            Sorry I haven't been on for a few months-life with kids...but I wanted to share that I have been using the supplements -Glucosamine with msm and the Quercetin that trying2cope was kind enough to tell us all about......and it is HELPING:woohoo:
            Frustrated and discouraged, I was all set to start Elmiron - (being the world's biggest skeptic, and a anxious weenie to boot)I kept putting it off and then read tryin2cope's post -I thought well, it was cheaper and was worth a try.

            At first I was disappointed, in that I didn't notice anything major. But after about a month of using these two gems, frequency, burning, pain steadily decreased. NOW I am cautiously adding in some beloved no-no foods in small amounts (wine, tomatoes, apples, choc.spices, fruits, peppers) occassionaly the next day I might notice a bit of discomfort but this usually disappears in 24r hrs---nite time visits to the bathroom down to 1 or 2x Hurray! I still have mild flares around certain 'times of the month' but am hopeful that this too will pass.
            cheers!

            Comment


            • I'm glad to hear its helping ya!!!

              Comment


              • Hi Lavendermoon,
                Glad to hear its working.I cant say its working for me yet.Only been 2 or 3 weeks so far.I was curious what your dosage is?Im taking 1000mg of mcm,500mg of Glucosamine,and 500mg of quercetin daily.I couldnt find the combo bottle of mcm/glucosamine 500mg.They were all out.
                Regards,GoldSeals
                54 year old male
                Diagnosed with IC in 1994
                Had symptoms since 1992
                Three cystoscopies.One biopsy with hydrodistention.
                This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
                Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
                Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

                Comment


                • Where are you getting MSM, Glucosamine, and Quercetin ? On line, health food store? Should the MSM be freezed dried? I have so many questions and feel lost. Maybe Trying2cope could tell us what he took and where he got it and how many mg's he used? Ziggy

                  Comment


                  • Glucosamine/msm

                    Friday night was my last Elmiron dose and I started taking the Glucosamine/MSM about three weeks ago. My symptons had cleared to a level that was manageable for me since I had been on the Elmiron for about two months. Taking both at the same time did not tell me which one or if both were working so I stopped the Elmiron. I must tell you that I was dealing with some pain over the week-end and I am not sure if it was something that I ate or if it was the elimination of the Elmiron. One fact for sure if it takes up to 4-6 months to work then one or two days after stopping the Elmiron should not be the problem. I will keep you folks posted as to my continued progress or lack thereof without the Elmiron. I have some other ideas that I will share with you later.
                    Take care.
                    lakecrutch

                    Comment


                    • Originally posted by Zygala87 View Post
                      Where are you getting MSM, Glucosamine, and Quercetin ? On line, health food store? Should the MSM be freezed dried? I have so many questions and feel lost. Maybe Trying2cope could tell us what he took and where he got it and how many mg's he used? Ziggy
                      Hi Zygala87,
                      I purchased it at GNC.It doesnt need to be freeze dried.It comes in a bottle.The store is only about 10 blocks from here.So it was easy for me.
                      GoldSeals
                      54 year old male
                      Diagnosed with IC in 1994
                      Had symptoms since 1992
                      Three cystoscopies.One biopsy with hydrodistention.
                      This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
                      Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
                      Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

                      Comment


                      • Originally posted by lakecrutch View Post
                        Friday night was my last Elmiron dose and I started taking the Glucosamine/MSM about three weeks ago. My symptons had cleared to a level that was manageable for me since I had been on the Elmiron for about two months. Taking both at the same time did not tell me which one or if both were working so I stopped the Elmiron. I must tell you that I was dealing with some pain over the week-end and I am not sure if it was something that I ate or if it was the elimination of the Elmiron. One fact for sure if it takes up to 4-6 months to work then one or two days after stopping the Elmiron should not be the problem. I will keep you folks posted as to my continued progress or lack thereof without the Elmiron. I have some other ideas that I will share with you later.
                        Take care.
                        lakecrutch
                        Hi lakecrutch,
                        Im glad the elmiron is working for.Unfortunetly it didnt work for me taking it for 2 years 3 times a day.In fact I believe the Elmiron made it worse.Elmiron contains sodium ,and I believe it was reducing the size of my bladder and irritating the lining.I was one of the first patients to take Elmiron around 1994.It was extremely expensive when it first came out.I still have some of it in a bottle.Which is probably no good now.
                        Hopefully the msm/glucosamine will work for you.I have an extreme case of ic and nothing is really helping.One of my urologists said hes never seen anyone as bad as me.I agree.A few years ago I attended a seminar in coral springs with a guest named Dr Moldwin.Unfortunely I could never really get to talk to him because all the women were standing around him drooling over his tan.What else I found out was that most of the people at the seminar had relatives who had ic and they were not even present.Having a real severe case of ic and they didnt have enough restrooms in the building.Everyone was complaining they had to walk to far to get inside the building.I was a wreck in the first place.Not to mention male depends didnt even exsist then.I had stuffed myself with paper towels as was still wet from holding my urine so long.
                        Im sure Dr Moldwin was an expert in his field but there was just to many people trying to ask questions.
                        Keep us posted on your progress.
                        GoldSeals
                        54 year old male
                        Diagnosed with IC in 1994
                        Had symptoms since 1992
                        Three cystoscopies.One biopsy with hydrodistention.
                        This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
                        Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
                        Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

                        Comment


                        • Originally posted by Zygala87 View Post
                          Where are you getting MSM, Glucosamine, and Quercetin ? On line, health food store? Should the MSM be freezed dried? I have so many questions and feel lost. Maybe Trying2cope could tell us what he took and where he got it and how many mg's he used? Ziggy
                          Hi Zygala,

                          We are trying the T2C Solution ... have been taking it for a while now, no notable results yet but it may be still yet to kick in. Enough people on this thread have reported at least some success, to make it worth it.

                          Have a full look through every post on this thread for details about suggested doses etc. Its also worth seeing what your MSM vendor thinks. Its a bit hit and miss ... my wife is taking more than T2C mentioned ... she thinks that at least its doing wonders for her skin

                          We found a vendor in Australia (where we are) for the MSM, but had to order the Quercetin from the USA to get it pure, i think it was from "eVitamins". Can find out for certain later if you have trouble locating it. The ICN store right on this site also has plenty of products options, have a browse around

                          The Glucosamine is pretty easy find ... we've all been having a pleasant argument about whether chondroitin is a help or a hindrance ... we've gone with no chondroitin in my wife's case.

                          Good luck!
                          Hi, I'm Kev - husband of IC sufferer.

                          symptoms - an owee wife

                          Comment


                          • Originally posted by Zygala87 View Post
                            Where are you getting MSM, Glucosamine, and Quercetin ? On line, health food store? Should the MSM be freezed dried? I have so many questions and feel lost. Maybe Trying2cope could tell us what he took and where he got it and how many mg's he used? Ziggy
                            The T2C Solution? Hehehe...I guess I really started something, but I can't take the credit. Veterinarians have been giving this stuff to cats with IC for years.

                            As for dosages, I am taking 1,000 mg of MSM/Glucosamine two times a day. If you search back through this thread, you will find a message I posted which has links to the exact same brand that I am taking. I'm not saying you have to take exactly the same thing, but this is what is working for me. I have not taken quercitin in 2 or 3 months and have not noticed any difference (no return of symptoms).

                            I did have a flare over the weekend, but I had not taken my MSM/Glucosamine in more than a week (I ran out, and could not get to the health food store before it closed all week. I finally got some over the weekend), so I definately need to stay on the MSM/Glucosamine to remain symptom-free. After taking two doses, my pain went away.

                            In my case, I only had to take it for about a month before I noticed relief from my IC symptoms. If you are taking it for 2 or 3 months and are not noticing any difference, it may not work for you. Some people who are allergic to sulfa or shellfish may have a problem with the glucosamine.(I take glucosamine sulfate). In fact, I believe the glucosamine sulfate form of glucosamine is the one which is most effective, because the sulfer supposedly has an analgesic and anti-inflamatory effect on the lining of the bladder (according to research I have done online). So, if you are taking other forms of glucosamine and not seeing any relief, this COULD be the reason why. Please keep in mind, I am NOT a doctor or health professional.

                            Good luck! It's great to read the success stories!

                            Comment


                            • I'm In!

                              Hi Everyone,

                              I am very encouraged to hear everyone's stories. I went and bought the Gluco/MSM and Quercetin yesterday and immediately started taking them. I figured it could not hurt and Elmiron doesn't seem appealing (although I have a very expensive bottle sitting in the medicine cabinet going to waste).

                              I know not everyone lives in the city, but Whole Foods Market has a few different brands to choose from for both products.

                              In four weeks, I hope to report good news!

                              DEU

                              Comment


                              • Hi,

                                I'm glad for you that you have found success and relief! I'm very interested in the alternative route, but became somewhat sick from starting out with too many supplements. I noticed that your Quercetin says "non citrus" on the label, and mine does not . . . so maybe I need to take some of the supplements back to my naturopathic doctor and go over them more carefully! Thanks again for the posting.
                                Waves
                                Diagnosed 6/4/07, also IBS, migraines, allergies,
                                hysterectomy, previous fibroids, cysts.

                                Help measures in process -- hope to start PT, etc. Main pain meds: HEAT, Tylenol, Alleve, Working on diet!

                                Cold infusion of Marshmallow Root tea 2x day, Citrus free Quercetin 2x day


                                I am not my illness -- it's just a facet, I aim to enjoy life and pursue my dreams! I hope it makes me a more compassionate human being.

                                Comment

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