Mesalazine and Kidney Trouble
7 Members
Created by Heidrun S.

Mesalazine and Kidney Trouble

This is a group for those who developed serious kidney problems on mesalazine (Lialda, Rowasa, Pentasa, mesalamine, 5-ASA, Asacol...) that forced them to stop taking it.

This is always proclaimed to be such an extremely rare side effect, but there are several of us here on this site that I've met so far. I hope this will be a place we can come to to discuss our options and how our condition evolves.

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  • Dawn

    Thanks for posting this community.  I know I had to have blood tests for kidney function when I was on Pentasa, but I didn't realize the seriousness of what could happen.  That sucks so bad, since you are all dealing with IBD on top of it.  Life is very unfair at times.

    13 months ago

  • Jay

    Well, my kidney's are shot to hell!  I'm leveling off at thirty percent function or a creatinine level of about 2.6.  Right now I'm on the edge of stage 3 to stage 4 Chronic Kidney Disease.  Once I get into Stage 4 and m percent drops to about 15 then I have to start getting prepared for transplant.  But who knows when that'll happen.  It could be five, ten, maybe even fifteen years.  Its definitely disappointing.........

    13 months ago

  • Heidrun

    That's interesting Lad, did your creatinine level go back to normal after you went off Pentasa? I had some protein in my urine at some point, but that stopped after I stopped the ASA meds. And are you still on LDN?

    I took fish oil for a long time too, but that didn't seem to make any difference.

    14 months ago

  • Lad

    My creatinine measured high also, but the deal breaker was when blood started showing up in my urine.  LDN did not improve this condition.  I'm now off Pentasa and on Cipro and fish oil and am feeling much better.

    14 months ago

  • Heidrun

    Same here Jay, about 30 percent... so the three of us are pretty much
    all in the same boat. And yes, I believe there are two different scales for measuring creatinine. I'm not too sure of the conversion but I believe mine translates to about 2.5 on your scale.

    14 months ago

  • mar

    This info is amazing, but look at the risks of permanent KIDNEY DAMAGE/ Failure due to Fleet's sodium phosphate preps, like Osmo-prep, Visicol, etc....  the dr's doing kidney biopsies discovered the link of all those using Prep for coloscopies... some even need a kidney transplant.   {read the last articles posted on this site}

      PLAIN TAP WATER can be used for a prep; ask your dr about alternatives

    15 months ago

  • Jay

    I don't know if you're using a different scale for your creatinine but mine has gone down from 7.5 to 2.9 with a gfr of 29 so...yeah I'm confused  lol

    Its about 30 percent function yippeeeeee

    15 months ago

  • Heidrun

    And my creatinine is similar to yours Bob, it recovered a little from 190-210 to around 170-180 now and I hope it'll stay that way (or possibly get better?).

    15 months ago

  • Heidrun

    I agree Bob, it feels weird to be singled out by fate in this way. But since I assume there aren't 10,000 members on this site and there's already at least three of us I wonder if they're not just downplaying this problem! It wouldn't be the first time...

    15 months ago