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  • #16
    I think the prelief is attainable in the ICN order store here. I had my pharmacy order it for me and now they stock it. I'm also one who gets hyperactive on the tricyclic antidepressants- especially Elavil. And if you already have insomnia this is a deadly combo. Prozac is more sedating for me, but this class of antidepressant isn't listed anywhere for help with the bladder.

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    • #17
      Little Sunshine

      Hi, sorry you are going through this. Can I ask what test you had to check for kidney stones? I am still waiting on an apt. with a Uro and that is one thing I need to rule out. I've been taking Cystoprotek for about a week now. It's supposed to be like Emilron in that it helps your bladder lining heal. It is natural and you can buy it on Amazon. Many people swear by it so I am trying it first, along with the diet. I too had insomnia with this, meditation and deep breathing has helped some, atleast my anxiety is alittle better.

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      • #18
        Originally posted by Little Sunshine View Post
        Cindy, Thanks for your words of wisdom. I think I decided I need to bite the bullet and at least try the Elmiron. And hope I don't become one of those 4% that lose my hair! If you take your medication with Pepcid...is that safe for the bladder?

        yes its ok for the bladder. Some people take it to help their IC because it is an H2 histamine blocker. Not sure how well it works for that but it shouldn't hurt.

        Does the Elmiron help with your urgency and frequency at all, or is that a different drug?

        It depends on whether your urgency frequency is brought on by pain and irritation. If it is then over time I would expect that to help.
        I also take an overactive bladder med called vesicare that REALLY helps the frequency/urgency and gets rid of that nagging feeling of always having to go. It causes dry mouth (they all do) and can cause constipation. Some people can't take them because of retention but you don't know unless you try. Actually I left a msg at my doctors office that I want to try gelnique after earthlady mentioned it cuz it will bypass the digestive system so no dryness in the mouth etc. There is also a patch called the oxytrol patch, same meds as gelnique


        I think my biggest problems are urgency, frequency and pressure. I wondered if the Elmiron helped with any of that.

        Those are my biggest symptoms too and the overactive bladder meds help tremendously for me anyways. I think the inflammation can cause those symptoms too so elmiron would help that.
        Walgreens carries prelief, its with the antacids. Calcium citrate is good too which I take a little at every meal. Aloe vera capsules by Desert Harvest is a natural anti-inflammatory and I take those too. You can buy those here or on line at their website. I've been taking cystoprotek for a year or so but it hasn't helped me. Others swear by it so it seems to help some.
        Cindi


        Gelnique for frequency/urgency - works great
        Macrobid after sex
        Prilosec, continuous birth control pills
        synthroid .088mg, mucinex-d, restasis

        Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

        Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

        IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
        Great treatment flowchart on page 19 of the pdf

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        • #19
          Christine 222, My urologist did a CAT scan of my kidneys and pelvis back in October. The scan of the kidneys was to look for stones and the scan of the pelvis was to look for any structural abnormalities that may have been contributing to all of the UTI's I was getting. This Feb I was given an unltrasound to (hopefully) detect a stone that the CAT scan didn't pick up due to its size, or there was a possibility that the stone was lodged somewhere too. I want to say that the ultra sound is better for the detection of kidney stones. But, don't quote me on this. I also had a transvaginal ultra sound done to rule out an abnormally large cyst on my ovary that may have been putting all of the pressure on my bladder. Unfortunatley diagnosing IC is a costly process of elimination. Keep me posted on what they find. As my dr. told me...I will pray that they find kidney stones, because those are an easier fix. I hope you find the answers that you deserve...sooner, rather than later.

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          • #20
            Earth Lady, I have one more place here in town that I am going to check for the Prelief, otherwise I will go ahead and order it from the the IC store. Yeah, the anti depressants are a hard group for me. Over the years they have tried putting me on a few that have been FDA approved to treat chronic pain (for my back) and I have always felt hyperactive and so totally weird on them. I guess this one COULD be different. I think I am, however, going to take a stab at the Elmiron. From what I've read, people have had some pretty amazing luck with it. Whatever the case, I am ready to get out of this painful and depressing rut and get my life back. I hope you are having a good, pain free day!

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            • #21
              Cindi, Thanks so much for the valuable information. I think I am going to get my Elmiron script filled today and give a stab at it. I guess I will never know unless I try....and if it does help...I'll wonder why I sat around so long waiting to get it filled. I guess it's just fear of the unknown. I wish there were just one simple fix for all of this! I will have to look into the Vesicare...as that sounds like something I could really benefit from. I can't get my life back until I can feel like I can get more than 15 feet from the nearest bathroom! My husband and I are taking an 8 hour road trip tomorrow. I am dreading it in more ways than one.

              Comment


              • #22
                LittleSunshine- In case you don't have much luck with the Vesicare and side effects from it- I've been taking Gelnique transdermal gel and am having a lot of success with it so far. No dry mouth and no constipation now. Vesicare constipated me in one day, and I'm not easily constipated. TMI-?

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                • #23
                  Earth Lady, I haven't heard of what you mentioned...the gel. Is that through script form the dr only? Does it help w/ frequency and urgency? I am VERY afraid of anything that causes constipation because that is something I struggle with anyhow already! Ahhhh. This is too much for me sometimes. My husband tells me to go out and get my mind of of it. Easier said than done. I have had to give up most of the things I would have done to get my mind off of things. The gym, the coffe shop, school....etc, etc. I want my life back so bad it hurts.

                  Comment


                  • #24
                    Yes it is a script. It is a form of Oxyutynin but is transdermal. I've had a little intestinal disturbance from it but nothing like the other OAB meds I've tried. The thought behind the transdermal meds is that there are less side effects because it is absorbed directly thru the skin and don't have to go thru the stomach etc first. It's just a thought, in case the Vesicare doesn't work out. Always good to have an alternative.

                    Comment


                    • #25
                      oops - forgot to add - yes it has helped a lot with frequency and urgency. Still have a twice a night visit with the bathroom, but the intense urgent burning sensation is gone. So far-anyway.

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                      • #26
                        Earth Lady, Thanks for the info...because yes, I am looking for the meds with the least amount of side effects. Seems like everything they put me on...I'm one of the rare % of people that has some awful side effect. Go figure!

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                        • #27
                          Yeah me too. It stinks being this sensitive to meds. I keep telling the drs. that I am a low dose responder and usually only need half the usual dosage that other people need. They look at me like I'm crazy. I'm used to it by now.

                          Comment


                          • #28
                            Originally posted by Little Sunshine View Post
                            carlaincalif, Thanks for your reassuring words. Can I ask you what treatment plan it is that finally began to work for you? My doctor prescribed Elmiron and then some anti depressant to help with the pain and frequency. Honestly, I am terriefied to take either. The Elmiron has some pretty crazy side effects (don't all medications). But the last thing I want after all of this is to take Elmiron and risk losing my hair. I feel like I am stuck between a rock and a hard palce, but your story gives me hope. Thanks so much for sharing. I hope it's only a few more months before I get my life back too! Good luck and stay healthy!
                            I imagine you were also given Elavil (amitryptaline) as the anti-depressant; at low dosages, it's used to manage chronic pain. I've been on both Elmiron and Elavil for a year now and have had great results. I know that you can read negative things about Elmiron; some people have negative side effects, and some people just prefer not to take drugs. However, I've had very few side effects (and still have all my hair). If you are on the fence at all about trying them, I would encourage you.

                            The percentage of people who have hair loss with Elmiron is very low, like 1-4 percent, and it's not permanent. If you start losing some and it bothers you, you can stop taking the Elmiron (or take less) and it will grow back.

                            Again, not pushing pills, but just stating that a lot of people have had success with Elmiron and Elavil, so if you are at all open to trying them I would recommend that you do.
                            Lori

                            40 y.o. mom, wife and marketing manager

                            "Il faut manger pour vivre, et non pas vivre pour manger." -- Moliere ("One should eat to live, not live to eat.")

                            IC symptoms began Feb 2010; diagnosed Mar 2010

                            Treatments:

                            Oral
                            Elmiron 3x day; Elavil 25 mg/day; Prelief (when I remember!); Benadryl and Prosed DS as needed for flares

                            Other
                            Acupuncture 2x/month; yoga; IC Diet; meditation and breathing exercises for stress; heating pad for flares

                            Comment


                            • #29
                              Gelnique

                              Originally posted by earthlady View Post
                              LittleSunshine- In case you don't have much luck with the Vesicare and side effects from it- I've been taking Gelnique transdermal gel and am having a lot of success with it so far. No dry mouth and no constipation now. Vesicare constipated me in one day, and I'm not easily constipated. TMI-?
                              I called and left a message at my doctors - UG -on Friday that I wanted to try this. I found the oxytrol patch wasn't quite as good as the pills but it did stop the spasms, just didn't help quite as much with the freq/urg. The pills are so drying though. I could try the patch again. I developed keratitis pelaris on my legs while using it, something I hadn't had happen since I was a kid and thought it must be something about the oxytrol going through transdermally and maybe drying out my skin....am hoping the gelnique will be gentler in that regard. It virtually had no side effects though which I really liked.
                              Cindi


                              Gelnique for frequency/urgency - works great
                              Macrobid after sex
                              Prilosec, continuous birth control pills
                              synthroid .088mg, mucinex-d, restasis

                              Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                              Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                              IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                              AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                              AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                              Great treatment flowchart on page 19 of the pdf

                              Comment


                              • #30
                                Cindi

                                I was interested in knowing more about the macrobid you take after intercourse. I am assuming it is b/c you are TERRIFIED of getting a UTI...as am I. At what dose and for how long do you take the macrobid after intercourse? I know, kind of personal so if you don't want to answer I totally understand. Lastly, is it safe to take this antibiotic even though you have IC? Since being diagnosed I have been so much pain that I can't imagine having intercourse ever again. Alas, I'm not sure how my husband would feel about that. I of course want to keep him happy in that regard....but there is now so much anxiety regarding the way I feel, etc, etc. Any feedback you have would be wonderful. Thanks!

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