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  • Longing for the days of remission

    I have read some interesting stuff here on this topic and thought I would put in my two cents. In reading a lot of things on this site, I have learned quite a bit from others. Although everyone is different, and I believe that we may be dealing with more than one disease process here, some of these gals stories are amazingly familiar. I have had IC for at least 12 years. I am one of the lucky people for whom elmiron works. I was part of the original clinical trials and achieved complete remission on elmiron alone. Over the years, I have done so well that I have had years with virtually no symptoms. I eat and drink anything, and unfortunately, I get sloppy with taking my medication because I really don't like the thought of needing pills to survive for the rest of my life. Up until recently, I have had only one bad flare. This was after the birth of my daughter 10 years ago. I did not take elmiron during my pregnancy and had no IC symptoms at all. After the birth, I did have a very bad flare, but went back on elmiron and eventually it quieted down. In the past year or two, I have had a few minor flares that have lasted a few weeks and resolved with some minor diet changes and getting back on the medication. I am currently having the worst flare I can remember. It may be coincidence, but my flares can all be related to extreme stress and trauma. Does anone else have this experience? When my house was very damaged in a major hurricaine, I flared while living in a shelter for a month. Most recently, I had a very bad back injury and I have had unrelenting back pain for 5 months, and of course my IC has flared worse than ever. This time, it doesn't seem to want to budge. I'm back on elmiron plus vistaril, and for the first time I'm trying Aloe caps, quercitin, and glucosamine chondroitin MSM. I sure hope something works soon. My advice to anyone who goes into remission with elmiron is don't stop it unless your doctor tells you you can't take it for some reason. I have learned that eventually the IC always comes back. I guess I'm here because I do believe remission will come again, and I will never take it for granted.

  • #2
    Hello Kathleen and
    I have not taken Elmiron yet but I am going to ask my Uro about it next time I go..As far as stress causing your flare.. I agree with that completly.. I to lost my home due to Katrina.. I was in a major depression and had to tones of stress.. I was dg with IC one year later, but was having the symptoms before the dg just didnt know what it was.. If Elmiron does help me with no problems I plan on staying on it..

    I sure hope you get some relief soon.. Good luck ((((((((((hugs))))))))))

    Ronda
    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
      HI! Gosh sorry to hear about the dreadful pain you are in now! I hope you can get it back under control soon.
      I'd posted an another thread tonight that my IC specialist/UROsurgeon told me that IF you go off IC it comes back and sometimes worse than you had it the first time. I sure wish scientists would get this whole thing figured out and find a cure for us. I feel like I'm on a roller coaster most of the time trying to juggle meds, food, vitamins and illnesses. It can drive ya nuts sometimes! Hope you feel better soon! Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment


      • #4
        I forgot to mention.......stress always makes me flare too......any emotional upheaval will do it for me. UGH!!!!!

        Double Spinal Cord Stimulator surgery 8/09
        Unsuccessful MiniArc sling surgery 12/07
        Dx'd Hypothyroid
        Dx'd Chronic Axonal Neuropathy & Myopathy
        June 2007
        Dx'd IC May 2006 (after suffering for 25+ yrs!)
        First Cysto 1979
        First Hydro 1981 (Many treatments since then!)
        Collagin"Durasphere" injections for urethra
        Gall bladder surgery Aug. 2004
        Gastric Bypass Dec. 2004
        Dx'd: Barrett's Esphogus July 2004
        Dx'd: Vaginal Atrophy 2005
        Bladder surgery 2000
        Dx'd: IBS 2000
        Hysterectomy (fibroids) 1999
        Laminectomy 1989
        Dx'd: Degerative Disk Disorder 1989

        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

        Comment


        • #5
          Stress is my biggest trigger! In fact, I was under extreme stress when I developed this disease and it was extreme stress that pulled me out of my last remission. I've really been working on relaxation techniques lately.
          mom_in_ma

          Comment


          • #6
            I've had a number of symptoms over the past 6 weeks, but had to wait to see the urologist, so am now on Hydroxizine for a few weeks, then . . . I can manage the diet, but if the constant urethral burning comes back, I could barely stand it, and nothing works! You mentioned MSM gel. I ordered some from Dr.Jacobs. Is it really no problem to apply to that area with no problems? How many hours do you find it works?

            Comment


            • #7
              HI! In the beginning when I first got the MSM gel I used it 3 times a day for 5 weeks.....now I just use it once a day. It doesn't burn or anything like that. I hope it works for you as well as it has for me. Let me know....Roxie

              Double Spinal Cord Stimulator surgery 8/09
              Unsuccessful MiniArc sling surgery 12/07
              Dx'd Hypothyroid
              Dx'd Chronic Axonal Neuropathy & Myopathy
              June 2007
              Dx'd IC May 2006 (after suffering for 25+ yrs!)
              First Cysto 1979
              First Hydro 1981 (Many treatments since then!)
              Collagin"Durasphere" injections for urethra
              Gall bladder surgery Aug. 2004
              Gastric Bypass Dec. 2004
              Dx'd: Barrett's Esphogus July 2004
              Dx'd: Vaginal Atrophy 2005
              Bladder surgery 2000
              Dx'd: IBS 2000
              Hysterectomy (fibroids) 1999
              Laminectomy 1989
              Dx'd: Degerative Disk Disorder 1989

              For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
              I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

              Comment


              • #8
                you made me think...

                I was in remission for about a year and a half. Then all of a sudden I am having an awful flare. I can't seem to figure out why...maybe mine is stress related too. My husband of 13 years and Ii had a very bad couple of weeks...you know the "I can't stand to be around you" pitfall that I think all marriages go through from time to time...ours just lasted longer than normal...lol Anyway, I am now considering the idea that since I was so stressed about a month ago this through me into a flare. I too am having to get reaquainted with my herbs and meds...AND Diet!
                ~ Brandy ~


                ~A laugh is a smile that bursts.~

                Comment


                • #9
                  i got diagnosed during a really stressful time. My husband and I were living in a cottage on my mother-in-laws property and i hated it. We had a lot of fights during the time and my mother-in-law was always getting in our business. Things are much better now and we have a house of our own!
                  I have had a bad flare, it you can call it that, for almost a year. It's encouraging to hear you did well being pregnant. I want to have kids, but right now I can't go without my meds.
                  HOw long did it take the Elmiron to work for you? i'm not sure if it is for me.

                  Comment


                  • #10
                    I'm sorry you are in a flare again, Kathleen. I hope being back on Elmiron and some of the other treatments you mentioned will help get you back to remission.

                    Thanks for the reminder about Elmiron. I am one who's been helped by it and it's good to remember to never take it for granted or go off of it.
                    Kim

                    Diagnosed August 2001

                    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                    *****************************

                    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                    Comment


                    • #11
                      I'm another one that has been helped with Elmiron--been using it since 1997 I have had no problems. Pretty much follow the diet--(not as diet sensitive as others are). Was even in remission for almost 5 years up till I had my hyster. back in 2000 since then its been managable with medications and having hydros when it gets too much for me.

                      Comment


                      • #12
                        This reply is really a question for Mary who has had a hysterectomy. Did you discuss any form of HRT after the hysterectomy and do you take estrogen in any form. I am currently taking the pill because it definitely helps my IC, and I don't get many periods a year (3-4) minimizing hormonal flares. My Gyn tells me I am going to have to get off the pill when it's time for menopause, and I am terrified that loosing my estrogen will throw my bladder into an uncontrollable flare. Any thoughts.

                        Comment


                        • #13
                          stress

                          This is all very interesting about stress. I too came down w/ IC in February ( dx May 3, 2007) while I was in a high stress situation. I was in a year graduate program that was very demanding, driving 1 1/2 hours each way to classes, hardly sleeping because of the work load, and also student teaching. IC put the breaks on all this and still trying to get control of the situation. Did anyone read the post about cats getting IC when injected w/ something that will cause the cat to be stressed. It said that the adrenal gland was smaller than normal in cats that got IC and that the gland did not respond properly while under stress. Very interesting. I guess relaxation techniques are key. -Kathy

                          Comment


                          • #14
                            stress and IC

                            I am newly diagnosed with IC. I do believe that stress caused my IC. Otherwise I have lived a healthy life, excercise and eat well (vegetarian, tho I love good food...but am not overweight).
                            My stress history: 2,5 years of extremely bad nights taking care of my very allergic son who wakes up 3-30 per night every night. I've been a stay-at-home-mom for those 2,5 years now and my hubbie has not been very happy with the amount of money I bring to this household. He has been severely putting pressure on me on going to work or studying to get a degree at the univ. This is why -- even tho I am really deprived of sleep -- I decided to take new courses at the univ this year.
                            Before they started in january my husband suddenly announced in December that he was leaving me and my son. It was a huge emotional stress factor. I can't even tell you how it affected me. Being from a broken home I never wanted anything but a "normal" family for my children (it now seems I will only have one...).
                            Just after a few weeks after his announcement my studies started. Had I been wise I would have dropped them right then and there. But I'm very stubborn and like to finish what I've started.
                            I immediately noticed that the quality of my life started to wear down. I studied most of my freetime and the rest of the time was filled with chores and taking care of my son. And worrying about my family and how we would end up. (My husband eventually stayed with us but...I do not know for how long).
                            The situation got worse and worse while my studies took more and more of my freetime. I'd been telling my husband for 2 years now that the lack of sleep will make me sick again (I've already had an ulcer and IBS from stress). This year I told him that my body can not handle all of this.

                            A week after I turned 30 I was in pain all day and all night. And soon was diagnosed with IC.

                            I can not say how relieved I was to hear that with Elmiron one can eat anything. I want that med too! And I pray on my knees every day that they will find a cure for all of us. I don't want to live like this for the rest of my life.
                            I do not know if Elmiron can be bought in Finland. Must ask my doctor. But was it Elmiron that made one's hair fall off? Don't want none of that, no.

                            Miu

                            Comment


                            • #15
                              More about elmiron etc.

                              Wow, I can't believe how many people here have had so much stress that is linked to flares of their disease. My guess would be that the constant stress causes a hormonal response ( adrenal gland) that in some way alters the immune system. I hope someone tries to figure out the mechanism and perhaps some day we could use this knowledge to prevent flares. I have come to learn that there will always be stress. I'm sure I could handle it better, but some things are just too big to meditate away. For instance, after I had been diagnosed with IC, a few years later, I suddenly became ill and was diagnosed with a very agressive form of Lymhoma. This was all the more horrifying since I was about 10 weeks pregnant. If you think IC is bad, I'm here to tell you there are worse things. My Mom died suddenly while I was getting radiation treatments and of course my IC went crazy. I give all you gals a lot of credit for going through so much and remaining positive.
                              A few people responding here have not tried Elmiron and have some questions. Elmiron went through FDA trials and took a long time to get approved. One of the reasons for this is that it does not work for even half of all IC patients, so the numbers going through the trials were far from convincing. About 30% of patients will respond positively, and right now no one can say for sure who will and who won't. It takes at least 3 months to work, and maybe even longer to reach its maximum benefit. For me, it was a slow but steady course and I think at about 4-5 months, I was 90% improved.
                              I have had very few side effects, but my uro tells me that many women complain of hair loss. Now that he mentiond it, I may notice a few extra hairs on the bathroom floor, but I am far from bald. I have already lost all my hair in order to save my life, and if I had a choice I would gladly give up my hair if I could be cured of IC. For anyone who has not done a full (6month) trial of elmiron, and is still out of control, it is probably worth a try. You may be one of the 30% who respond. For the gal who lives outside the US you would probably have to be seen here in the US to get a prescription, and unfortunately importing the drug could get costly. I am seeing here that many are responding well to the rescue instills. These are not too expensive, particularly if you can learn to do it yourself. This would seem to be the next step if you can't get, or don't respond to elmiron. Good luck to all.

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