Announcement

Collapse
No announcement yet.

New to this...normal or not?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • New to this...normal or not?

    I was recently diagnosed with IC. I just started Elmiron 3 weeks ago. I hear it takes 3 months to a year to work. In the meantime, I am extremely uncomfortable. I am also taking Vesicare to help with the bladder spasms. It does give me some relief but I still am pretty uncomfortable. Sometimes I feel like I have a UTI which is absolutely horrible. The constant sensation that I have to urinate right after I go, the discomfort in my abdomen. I also have urethral itching. It's doesn't burn, it itches! Sometimes it feels tender. Is the itching normal? 2 weeks ago I ended up in the ER because I thought I either had appendicitis or an ovarian cyst. The ER didn't do any scans or tests. They just did blood work and a urine culture & everything came back fine. The pain I was in was debilitating. I couldn't keep my body straight, I had to be bent over in some way to give myself some relief. I started reading & I saw IC can "flare up" when you are due for your period. Funny thing is, the month before, I had the same problem. I just didn't go to the ER because the pain was a bit more tolerable. Has anyone had this experience?

  • #2
    Hello!
    When it comes to the itching I have personally never had that. I do have the urgency to go even RIGHT as I step out of the bathroom. Due to that feeling sometimes I can go 3 or 4 times within like a two minute time span. It does become very annoying. As for the flare ups during your period, I get it ALL the time during my period. It is usually the worse the week before and the week after. Sometimes the only thing I can do to make it feel better is crawl in a ball and wait. In the mean time I was looking up some flare up remedies on the forums and I read that a Burger King milkshake could help. I tried it out yesterday as I was almost in tears because of my flare up and it truly did work. Keep hanging in there!

    P.S- I just started Elmirol too so I am not sure as to how anything works with that
    Medicines Taking
    • Elmiron 3x a day
    • Amitriptyline 1x a day
    • Pyridium as needed


    “I've always made a total effort, even when the odds seemed entirely against me. I never quit trying; I never felt that I didn't have a chance to win.” -Arnold Palmer

    Comment


    • #3
      I have been told the Elmiron takes 3-12 months to work That's a long time. Both times I had those awful flare ups, it was about 1 week before my period. My GYN wants me to have an ultrasound down just to check my ovaries but I expect them not to find anything. I really think it is the IC. Also, I found that curling into a ball was the best remedy. I just can't go through that every month. I have had 3 surgeries and I never had pain like that in my life. It was awful!

      Comment


      • #4
        Is Elmiron all you are taking? Many people also take Elavil for pain or do other treatments like instillations for relief while they are waiting for their Elmiron to take effect. It took me about five months before I noticed a real difference. I would say I'm significantly better today, but I still need to take Elavil to control my pain. You might want to talk to your doctor about additional treatments you can try to control your symptoms. Not everyone gets relief with just Elmiron alone.
        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


        • #5
          I am currently taking Vesicare to help with the spasms. It seems to help the best. I have tried Ditropan, Detrol, Levbid, Elavil and Gelnique. The Vesicare definitely helps but it just makes everything tolerable. I want to feel comfortable. Hopefully in time. Let me ask you this....did you lose any hair while taking Elmiron?

          Comment


          • #6
            I lost no hair. Hair loss is actually not all that common; studies indicate that less than 5 percent of people lose hair on Elmiron. If you do lose hair, you can stop taking it or cut back, and the hair loss will stop. It's not permanent. Also, I know there are people who decided that the relief they got was worth the hair loss, and after they were on Elmiron for a while, the hair started growing back.
            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


            • #7
              OK, good. I worry about hair loss because 10 years ago, I was on heart medication and I was losing hair like a cancer patient. I would have clumps/handfuls coming out. My hair used to be thick, long and curly. Now it is thin, short and straight. I need to find something that helps it grow. That's why I am so freaked out about hair loss. My luck, I would be the one!

              Comment


              • #8
                Originally posted by jwagg View Post
                OK, good. I worry about hair loss because 10 years ago, I was on heart medication and I was losing hair like a cancer patient. I would have clumps/handfuls coming out. My hair used to be thick, long and curly. Now it is thin, short and straight. I need to find something that helps it grow. That's why I am so freaked out about hair loss. My luck, I would be the one!
                Check the threads on Elmiron, but I think some people have said they've had success taking biotin while on it to prevent hair loss. I didn't try it because I didn't lose any hair. You might also see if it helps at all with the effects from your previous hair loss.
                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


                • #9
                  I find to stop the urgency it's best just to pee in the showers with very warm water spraying towards the crotch. It seems to stop the spasms before they start.

                  I'm on valium, ditropan, and soon to be soma to control flares.
                  • 27 year old student
                  • Had symptoms since I was 5
                  • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
                  • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
                  • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
                  • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


                  Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

                  What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

                  What didn't work: Elavil, vistaril (12/22)

                  Comment

                  Working...
                  X