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5-ASA (Mesalamine, Lialda) caused my kidneys to fail

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Ulcerative Colitis
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Posted 1/25/2017 5:03 PM (GMT 0)
Hi. I am new to the forum (I'm more of a lurker than a poster wink ) but wanted to share a recent experience of mine. I am also curious if others have had similar experiences.

I've had UC for >25 years. It has always been well-managed with the 5-ASA drugs (Mesalamine, Lialda). I always had my kidney function (creatinine) checked annually--Until recently, I never had an abnormal kidney reading.

Last summer I suddenly became extremely nauseous, loss of appetite, began vomiting, losing weight. Thought I was having a bad flare and went to the GI doctor. Turns out I had acute kidney failure--my creatinine level was off the charts, and I had just had it checked 6 months previously. A kidney biopsy showed extensive kidney damage and scarring, even though my creatinine levels for 25 years were normal. Now my kidneys are operating at roughly 25% of normal capacity.

I am not an MD. However, I suspect my kidneys have been damaged by the 5-ASA drugs over 25 years, but the damage was not reflected in my Creatinine levels until the damage became so acute that my kidneys failed.

If you are on the 5-ASA drugs, get your creatinine checked annually. However in my case that was not enough. In my opinion (not an MD) the medical community needs to consider recommending a kidney biopsy for those on the 5-ASA drugs for >20 years, because the kidney damage is not always reflected in Creatinine levels.
Posted 1/25/2017 5:23 PM (GMT 0)
Oh no! This is what I am afraid of. I actually suggested to my doctor that we do kidney & liver tests annually and she agreed. But it seems like that's not necessarily going to cut it, based on your experience.
Posted 1/25/2017 6:07 PM (GMT 0)
Oh sad to hear this had happened to you. There are always risks for some of us regarding long term meds and further complications that cause damage. There is another member, that I know of, who has had kidney damage from 5ASA.

I wouldn't suggest kidney biopsies as a surveillance method, but there is certainly other blood testing that could be added in addition to creatinine to hopefully show some changes.
I'll discuss this with my GI when I talk with him in a few months.

What meds are you using now for your UC?

q
Posted 1/25/2017 7:13 PM (GMT 0)
Sorry to hear you've got this (listed as a rare side effect of mesalamine). What is your prognosis? Will stopping the medication reverse it? Is the damage permanent? How is this being treated?

I was able to quickly dig up a few papers on kidney damage from mesalamine (interstitial nephritis)

/www.ncbi.nlm.nih.gov/pmc/articles/PMC2694651/

ndt.oxfordjournals.org/content/11/4/614.full.pdf

"Results. The available evidence suggests that renal
impairment of any severity may occur in up to 1 in
100 patients, but that clinically significant interstitial
nephritis occurs in less than 1 in 500 patients."

"Conclusions. It is suggested that serum creatinine con- centration should be measured each month for the first 3 months of treatment, 3-monthly for the remainder of the first year and annually thereafter."
Posted 1/25/2017 7:41 PM (GMT 0)
Another possible is of course long standing UC itself, I take no meds but egfr is around 60.
The other sign besides blood test is protein in the urine.


Old Mike
Posted 1/25/2017 7:56 PM (GMT 0)
True could be kinda like UC and Primary Sclerosing Cholangitis (PSC) in the liver.
Posted 1/25/2017 10:59 PM (GMT 0)
that REALLY sucks ! thanks for sharing such important information -
Posted 1/26/2017 3:47 AM (GMT 0)
You all are so very kind! Thank you all for your comments and links to the academic literature. What a lovely group of people on this site.

I hope I did not overdo it or scare people about Lialda and Asacol. It worked great for me for years. And probably most people can take it without this happening to them, as long as they get their Creatinine levels checked annually. And as someone pointed out, there is some evidence that UC is associated with kidney disease. I just wanted to put my experience out there, and I was curious if something similar had happened to others.

One thing I may suggest --keep track of your Creatinine levels and see if they are increasing over the years (but still in the "normal" range). I did not do that (neither did the docs). After this happened, I went back over a few years of lab results and saw that my Creatinine had been creeping higher (still in normal range).

I'm 54 years old. My kidneys are now functioning at around 25% capacity. But they are functioning, I'm feeling much better, and my Creatinine has stabilized (albeit at a bad number), so I'm OK for now as long as the kidneys don't get worse. The nephrology doc says everything else looks good (no diabetes, high blood pressure, or other stuff that adversely affects the kidneys).

Since I can no longer take Lialda, the UC doc suggested I go on Imuran as a maintenance drug. Normally I am a good girl and do exactly what the doctors say. But it seems nuts to me to take a powerful drug like Imuran when I currently have no UC symptoms. So the UC doc said it was ok if I "go commando" and see how I do with no UC drugs, and if I flare to treat it with prednisone. If this doesn't work, and I flare too much then I can try Imuran.
Posted 1/26/2017 2:06 PM (GMT 0)
going commando is always my first choice wink

hope it goes well for you - good luck and use pred wisely !
Posted 1/26/2017 2:49 PM (GMT 0)
There are members here, including myself, who try to remain in remission by monitoring our diets for foods that trigger symptoms. A food diary helps with special attention to gluten and dairy.

But for me diet modification helps but isn't always enough. The good news is that there are several natural supplements that are shown to be just as effective as mesalamines for maintaining remission. Certain probiotics (find which ones are compatible with you), curcumin, and boswellia. Many threads here discussing these supplements that may help you to remain in remission without escalating into higher drugs.
Posted 1/26/2017 4:28 PM (GMT 0)
In what part of the world do you reside Carol? My doctor brings up the potential for kidney issues with ASA's just about every appointment. She says they have more issues in Europe than in the U.S. for some reason. She speculated that Tylenol use was higher in Europe. I don't know if this was just a throw away comment or based on some research she had done.
Posted 1/26/2017 5:56 PM (GMT 0)
Uniform Charlie....ASA is not the same as 5ASA. So i assume your doctor is confused as are you in the term to compare it with Tylenol use.

q
Posted 1/26/2017 6:12 PM (GMT 0)
Some "natural" remedies are just as heavy on the kidneys and/or liver as pharma drugs so they need to be researched for anyone with damage.

If it was me I'd wait and see what happens, maybe monitor with regular calprotectin stool tests, but as soon as you notice any symptoms get on to something.

Tylenol can damage kidneys and liver if overused.
Posted 1/27/2017 4:03 PM (GMT 0)
She was speaking specifically about lialda, quincy. I am not confused, just didn't include the "5"
Posted 1/27/2017 4:27 PM (GMT 0)
I'm sorry to hear that. I was just telling my GI that we know that these things can happen but we never think that they will happen to us, I was telling him about my recent hip replacement for Prednisone use.

I just saw on the news today that Scientists are getting much closer to developing human organs for transplants. No need for human organ donors and medicines to prevent rejections, these will be grown from your own DNA.

www.cbsnews.com/news/scientists-take-first-steps-to-growing-human-organs-in-pigs/

I've read in the past that Bladders and Kidneys will probably be the first organs available because they are simpler organs.
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