Announcement

Collapse
No announcement yet.

Think I've got it figured out!

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

  • Think I've got it figured out!

    I started taking CystaQ and aloe vera capsules several months ago. I noticed significant improvement in how the inside of my bladder felt. I had been on elmiron for over two years at that point, without much improvement. So, on my doctor's advice, I titrated off the elmiron to see how I would do.

    BAD idea! I started to have that awful, inside the bladder pain that I don't know how to describe. I wanted rescue instills all the time. So, I added the elmiron back in, and now the inside of my bladder feels ok again. So I guess the elmiron was doing something, but not enough. Working together, the three seem to give me a good 'coating' of the bladder wall.

    Well, it took some time to figure that out, and I'm not saying I'll never be running for the rescue instills again. Or throwing out my percocet just yet. But I do think I'm on to something, a combination that works for me. It's not cheap; my insurance only gives me partial coverage on the elmiron, and obviously no coverae on the herbals, but we can swing it and so it's worth it to lose that horrible raw feeling inside the bladder.

    These are not my only meds, but this seems to be the best cocktail for the bladder lining itself. Yay! It can be a long, tedious and painful process, but in the end it is worth some experimentation. You never know, you might get a great result like I have.
    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
    Wishing you happiness and good health, and all the best out of life.

    Peace, Carolyn
    ___________________________________________________

    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


    On the Beach with IC

  • #2
    Carolyn, that is great that you found something that works well with you. It is hard to find those combination and definitely a trial and error thing. Oh yes, we think we don't need a medicine, get off of it, and then here comes the pain. I am so glad that the combination is working for you. :woohoo:

    Sending hugs, Trishann

    Comment


    • #3
      My gyn told me that a lot of his patients couldn't stop taking the elmiron because of this. I am still thinking about starting it. Right know it cost me 338 a month so I am not taking it yet.
      I am 28 and have been married for 7years. I have two boys one is 6 and the other 2. I have worked at the same job for 10 years.

      Comment


      • #4
        I'm so happy that you found something that is working for you Carolyn. I've been taking the Elmiron since Nov and I haven't really noticed any help from it. I'm so worried if I try to stop it though I will realize that it really is helping. As much as I want to feel better I almost help I can go off of it, it's so darn expensive.
        Christine



        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
        I have tried every oral medication as well as rescue instills and DMSO.

        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
        Also proud mom to the best Bullmastiff on earth, Claus

        Comment


        • #5
          It is expensive, and the supplements aren't cheap either. This is not "the cure" for me, but it seems to be controlling this one aspect of my symptoms.
          Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
          Wishing you happiness and good health, and all the best out of life.

          Peace, Carolyn
          ___________________________________________________

          Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


          On the Beach with IC

          Comment

          Working...
          X