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Longing for the days of remission

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  • #16
    I needed to add my thoughts...although I am far from clear about what actually took place in my body....but I am in my first flare in 12 years. It is the worst. It started in Feb. This was 3 months after the start of an autonomic dysfunction that cause my body to be in overdrive. So that speaks to the stress theory. Also found out that I am totally in menopause, very very low estrogen. Ovaries never woke up after hyster. So that speaks to the hormone connection. I wish I could find a dr that could help me piece it together....I have had some better days lately know that I am on the patch and auto dysfunction is controlled. If we stick together we will solve these mysteries!

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    • #17
      Wow, a 12 year remission, that's fabulous. Did you take any meds or follow a diet while you were in remission? What dose and brand of patch are you using. I need to find a gyn who at least knows what IC is so that we can decide if I should get off the pill and start HRT. All my uro's are men and will not address any estrogen issues at all. Many women on this site also had a bad flare after hysterectomy. You might start a thread where you ask them what got them quieted down. I went for a great massage today. I feel better than usual. Perhaps this is a way to lower my stress hormones. I think I will try a series of them.

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      • #18
        me again - the 12 years of remission was after about 5 years of living with IC and taking elavil and being on the pill. I stopped both to have kids and have been completely ic free since I guess about 1994. I had three kids, 5 kidney stones and a hyster with no problems until this year. I ate everything, drank coffee and ran miles. I guess I got too used to being well....I would have occasional twinges or aches but nothing major. I am using the vivelle .05 patch. This reoccurence has rocked my world. I think I cried more in the past 3 months than in my whole life! Uro and gyno have been somewhat helpful but a great psychiatrist has helped cope with the two illness (auto dysfunction). He keeps track of my meds etc and helps me sift through the maze of medical craziness. I am taking 30 mg of elavil and trying to stick to the diet.

        I hope everyone has a good night!

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        • #19
          Hi runningshoe!

          I am very sad to hear that after such a long time of remission you are in a flare now! It must feel awful.
          I was just diagnosed with IC and I am trying to do the upsetting diet (I am also lactose-intolerant and vegetarian). And I'm still in pain every day and night. I wish I would go into remission. I have had to stop running and swimming but have refused to stop biking because I love it so (and we don't have a car).
          I also bought the book "Solving your IC puzzle" (or something like that). I am quite discouraged with all the advice and the even smaller diet suggested. Plus all the examinations for parasites etc that I do not know where to get them here in Finland. But I am also couraged in some ways because the book made me understand how I have made myself sick. My lifestyle, the things I eat (altho I thought I was being healthier than most with the vegetarian diet) etc.
          I had IBS before IC but it totally disappeared after my pregnancy and has not come since (3 years without symptoms). Do you think your pregnancies might have actually been a good thing for your body?
          I know I should've understood after I got IBS that I should change something. But the doctors just said "it comes and goes". Now I understand that it comes and goes and the body gets worse if you do not change the way you live.

          Hope you'll get over this flare soon and go into another good remission for the rest of your life! This syndrome really is a stinker.

          Miu

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          • #20
            Katherine- i just saw that you were asking me a question (I think it was dated back on the 22nd)- Yes at first the doctor put me on Premarin(?) but he took me off of it because of all the uproar on it with breast cancer (I think that was it-can't remember now). So now I'm taking Effexor-XR. Helps with hot flashes and IC pain.

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            • #21
              Mary,
              You're the only person I've really seen mention Effexor. I have been on it for almost a year and it seems to help. Did you get really sick from it at first?

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              • #22
                Katherine: No - can't say that I did, the doctor started me on a low dosage of it I think it was 37.5mg now I on 75mg. It has really helped me in the long run. I know my friends doctor put her on Prozac; I don't know what dosage. But they are finding that an anti depressant works for hot flashes and post-menopausal symptoms. Might ask your doctor.

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                • #23
                  I'm sorry you are flaring. I have not had a pain free day except for 3 days at the very beginning of this nightmare that started back in Jan 06. My husband thinks that this disease is very stress related after witnessing my symptoms go up and down he has noticed a pattern in me that when I'm stressed it gets worse. I was under a ton of stress when this disease showed up. Funny enough when I take Ativan I feel much better. I also think it has a hormonal link too. I hope you (and all of us) get back to your remission.

                  Di

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                  • #24
                    My heart goes out to you and pray you can get into another remission. I have had ic all my life, over 35 years and would like to say that in my case it wasn't brought on by poor eating habits or a bad diet. Stress can cause many illnesses and breakdown the immune system but I don't think that stress alone can cause IC. I know many people who are over stressed who didn't get afflicted by ic, but then again not all bodies are the same or have strong immune systems. I have endured a lot of stress in my life, and if I didn't suffer with this condition since my childhood I would be inclined to believe that it was brought on by stress. I don't think this is true in my case. The point I'm trying to make here is to not stress so much over what you are eating because it will cause you a lot of frustration and discontent. Just avoid fruit and juices whatever is very acidic and anything else you know makes you flare. If you are suffering with Ibs as well, as I am, there is very little we can eat which would render us very unhealthy and weak. I was terrified to eat at all when I had a severe 2 year flare and it really affected me psychologically and emotionally along with all the pain and suffering from all my symptoms. I practically starved myself, and watched everything I ate and it still took a very long time to get better. Today, I eat most foods and I do not fuss so much about what I eat. Flares will happen no matter what. If you have IC you are going to have flares. Diet does help to control this disease and make it more bearable and manageable, and perhaps prevents you from having severe flare-ups, but it didn't keep me in remission.
                    IC is a complex disease to understand and treat. It is very stubborn, and persistent. I pray for better treatments. I am at my wits end and are considering surgery, because pain meds do not work anymore. I pray that everyone afflicted with this condition can find something that will ease their pain and suffering.

                    Marsi4

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                    • #25
                      Remisson Gone

                      I was on Elmiron since late 2006 and was feeling very good. It took awhile for it to work but it did relieve my symptoms. It also made me lose nearly all my hair! So I decided (on my own) to stop taking it since I was feeling so good, I could eat again and had no pain. That was on May 22,2007 Not even a month ago. Yesterday I started having severe symptoms again, needless to say I started the Elmiron again. I was reading all about Cystoprotek and I wonder if it can take the place of Elmiron. I want to take both until I feel well again, then give up the Elmiron and just keep the Cystoprotek. Does anyone have any experience doing this?

                      Good luck to everyone.
                      Dia

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                      • #26
                        Some things to try

                        I am also trying both elmiron and cystoprotek. They say to just take 4 cystoprotek when you are on elmiron. How much elmiron were you taking? if it was more than 3 a day, then the first thing to do is to cut back on elmiron to 3. Dr. Parsons in San Diego knows the most about elmiron and has had patients who have been on it the longest. He claims that in some patients, the hair will actually come back after a while. He also now adds hydroxyzine to most patients, and you should ask your uro to try this. I have seen one post from a gal on this sight who quit elmiron for the same reason as you, and claims that she went into remission after one dose of cystoprotek. If she did, it was not from the cystoprotek because this typically takes 3-4months to work. The studies I have seen on cystoprotek show that many patients improved on it , but I did not see any talk of total remission, like you had with elmiron. The only way you will know is to try, but you probably should take the cystoprotek for the recommended 3-4 months before trying to wean off elmiron. Another thing that you should consider is having elmiron instilled directly into the bladder. That way, no hair loss. But, the majority of people who are controlled with instillations must do them several times per week, and some every day. This would mean that you would need to learn to insert a catheter into your bladder. Lots of people here do it. Losing your hair is a very traumatic thing for a woman, but it is up to you if you feel the trade off is worth it. I have only heard of the one gal who does well on cystoprotek alone, so if it were really so great, I think there would be many more. Good luck to you.

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                        • #27
                          Thanks so much

                          Kathleen,
                          Thanks so much for that complete and helpful reply. So it doesn't look like the Cystoprotek is a miracle cure. I didn't know that Elmiron by instillation doesn't cause the fallout either. I don't know if I could do the catheter thing, but I never thought I could give myself insulin shots at one time and I'm a pro at that now. Thanks so much for the advice. I will discuss it with my not so helpful urologist. The hair loss is such a cruel add on. I was only taking one Elmiron a day at the end after starting with 3 a day. So other options may help.
                          Thanks again.
                          Dia

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