No announcement yet.

Any ideas?

  • Filter
  • Time
  • Show
Clear All
new posts

  • Any ideas?

    My flare has increased significantly this last month and nothing I've tried seems to be helping for the IC pain or what I think is VV as well. In fact, I think they are making things worse. Here's the list so far...

    elmiron - no real side affects other than nausea, but after a month and a half I was worse that I've been in nearly four years. I've stopped it for now for fear that IT was making the ic worse.

    atarax - worked great for a night, but then it increased my retention and made mornings really uncomfortable. Took it for a week but couldn't stand the retention.

    elavil - make my retention worse and made ME crazy! I coudn't stop the buzzing feeling in my body and it made me horribly depressed. Irony in that one, huh!

    My frequency has increased, but it's not insane at this point (knock on wood). Mostly, I'm just trying to deal with the burning pain and pressure. My doctor is open to trying rescue instills - he hasn't done them before as he usually does dmso, but he's on vacation this week. So, I'll have to wait on that one. Pyrdium isn't touching it and is, I think, increasing my burning. Anyone have any other ideas? I fell like I've hit a brick wall!

  • #2
    Personally when I'm in a bad flare and in a lot of pain the only thing that helps is a heating pad and some pain meds. Does your uro work in a practice with other uro's? Is there a way you could call and ask to have something called in for you? I had a horrible flare a couple of weeks ago because of my period and had to call the uro and ask for pain meds, I didn't have any. They called me in 30 vicoden which was a life safer.

    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


    • #3
      I agree, see if your Uro will call in some pain medication. Between that and/or Pyriduim along with my heating pad that is the only thing that helps me. (Alot of times I have to go to work (especially now since the Legisation(?) is in session till the end of the month - unless the Governor calls a special session and then who knows for how long that will last!) But I'm pretty much the only one who knows what goes on with my area, so I got to be here. Which I figure I can be here with my heating pad or at home and might as be here and get paid for it!.
      Anyway, like I said see if your doctor will call something in and if so hopefully you will begin to feel better soon!


      • #4
        Thanks. I'm actually going to call the nurse tomorrow and ask for pain meds. In my four years of IC, I've never asked for pain meds. ever. But, I can't have more retention and I just need a break from the pain.


        • #5

          heating pad, ice packs, and a narcotic. vicodin works for me. i only use it when i have to.
          Lee Ann
          Current Rx Meds:
          Atarax, Ditropan, Elmiron
          Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
          Hooray for babies!
          Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
          Didn't work for me:
          Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
          IC (Mod-Severe) since 1996

          UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).

          My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...