Discussion in 'Fibromyalgia Main Forum' started by LISALOO, Jul 26, 2008.


    LISALOO New Member

    I have had IC for 5 years and it's 99% under control unless I have too many acid foods days in a row.

    However, on day 6 of Valctye I'm dying. I know someone else had this problem and detoxed, but I can't find the post.

    If anyone has suggestions, I'm open for them.

    I'll be back tomorrow (Valcyte fatigue). Thanks.

    LISALOO New Member

    anyone please!!!
  3. sascha

    sascha Member

    i don't recognize the reference- sascha

    LISALOO New Member

    Ic is interstitial cystitis - basically inflamed and holes in the lining of the bladder.
  5. gws

    gws New Member

    i also have IC, and is mostly controled with diet, although it can flare up, as you know. do you have meds for the IC? and are they working? when i have a flare of IC i try to drink as much h2o as possible to help dilute what ever is in my bladder. i cant offer advice about the valcyte as i have not been on it.
    i hope you are better soon

    LISALOO New Member

    No I don't take meds for IC. I'm 100% symptom free as long as I don't eat too many acid foods, avoid supplements that hurt (ribose, c, b's, etc).

    It's the valcyte that's the issue, it's getting better though.
  7. gws

    gws New Member

    i take oxybutin 5mg 3 times a day when i need it and also phenazopyridine 100mg 2 times a day, there are other meds for IC that also work well, can you ask your doc if it could be the valcyte? or if you could get something for the IC flare?
    hope you feel better soon

    LISALOO New Member

    I don't want anything to mask the pain, I want to get my IC into remission again, but thanks for the advice.
  9. jasminetee

    jasminetee Member

    My IC pain is from FMS. When I was on Valcyte it was worse but it got better when I went off it. I was able to tolerate Valcyte for 7 months before I had to go off it due to heart palps. The worst thing was Valcyte made my period so wonky I had to have a sonogram while on it to rule out cancer of the uterus. Luckily I was all clear but talk about torture!

    I was a non-responder to Valcyte and am much worse now but don't know if that's due to the Valcyte or not. Given its track record, I wouldn't necessarily put up with too many bad side-effects but that's a decision you'll have to make.

    I think Valcyte makes our systems much more acidic and I noticed I did better when I increased my carb intake. I hope you get some relief and it would be great if you respond to the Valcyte.

  10. 013101

    013101 New Member

    I've had IC for many more years than I've had CFS. I used to suffer horribly until a new supplement, called Cysta-Q went on the market. You can buy it at several of the IC sites (or at least they can lead you to it. Valcyte didn't seem to affect my IC one way or another, but whenever it does bother me, I just start taking that Cysta-Q and the flare subsides.


    LISALOO New Member

    thanks for the suggestion, I looked at the ingredients and i'm taking them now.

    I don't know if I can do 6 months of valcyte with this pain.
  12. sscape

    sscape New Member

    I took 150 of Zantac 2x a day. This helped the GERD that got worse with the Valcyte. IDK if it will help you.


    LISALOO New Member

    I'm still trying to find relief, I don't want to give up valcyte, it's been 5 weeks and today we went to Wisconsin Dells and did stuff. FElt good
    [This Message was Edited on 08/23/2008]