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Kidney Problems and Lialda?

Introduction:

I was diagnosed with UC in 2008. My symptoms literally developed overnight and I lost a ton of weight and could not even leave the house due to constant diarrhea. I have been trying various medications off and on since then and have gone through 3 GI doctors trying to find help. I have not been well controlled so far. I am a registered nurse and I often feel that I am more sick than the patients that I am taking care of.
Colitis Symptoms:
I currently am continuing to have watery, bloody diarrhea about 10 times a day which is not too bad compared to what it has been in the past. I am extremely fatigued, pale and very thin. I constantly have low grade fevers and occasionally high grade fevers above 103 degrees. When I have flare-ups I have bad joint pain and it’s so difficult to even move.

Kidney Problems and Lialda:

I have been battling this disease for awhile now and I just try to not think about the long term effects of what is happening to my body. I recently was hospitalized for 5 days for acute kidney failure. The doctors are unsure if is is due to long standing dehydration, another autoimmune disease, or my longterm use of Lialda. There is a small percentage of people that develop kidney probs with lialda and I may be one of them. The doctors are trying to get me on remicade ASAP and stop lialda to see if my kidneys start to function again. I’m only 27 and this is very scary for me.

Has anyone else experienced a similar reaction?

I have had every test run and still the doctors are unsure what to make of it. I am very concerned with starting on remicade because I always seem to get weird or rare side effects associated with medications. Also since I work in a hospital as an RN I am exposed to all sorts of infectious diseases and It seems like a bad idea being on an immunosuppresant and being in that environment. I worry that my manager and staff will treat me different because I will not be able to take many of the patients on our floor due to my risk of infection. Please let me know if any of you have had a similar experience or know someone who has. I had recently started the scd diet prior to hospitalization. I am going to continue it and hope it works. I was hoping to have more time prior to starting remicade but it is somewhat of an emergent situation. Wish me luck and I hope that the remicade works for me and does not cause a bad reaction.

Colitis Medications:

Pentasa- did not work
Prednisone- good results, horrible side effects
Lialda- Kinda works
Rowasa enemas- take nightly and helping but not a long term medication
Remicade- soon to start and scared to be on

written by Andie

submitted in the Colitis Venting Area

Tags: kidney failure





17 Responses to “Kidney Problems and Lialda?”

  1. BevMarch 3, 2012 at 4:59 pm #

    OMG Andie!

    I just started lialda today, for convenience more than anything. I was taking 4 asacol pills, three times per day (so 12 pills total), and on the lialda, I only have to take 4 pills, once a day. Anyway, I was so freaking nauseated all day today, after about two hours of taking the four pills. It has been just horrible. So sick to my stomach. I don’t understand that, because the asacol is the exact same drug, just a smaller pill. I plan on sticking it out for a week, anyway…

    I am worried about what you are saying about your kidneys, because I, too, react very badly to most meds. I am SURE that the root cause of my UC was my taking ACCUTANE for acne four different times, 15 years ago. Soon after that, I was diagnosed with this lovely disease (ulcerative colitis). Every time since then, thaht I have had to take an antibiotic (most recently for pneumonia last winter), I have bad flares of the ulcerative colitis. The last antibiotic for the pneumonia gave me my worst flare ever, to the point of my even considering surgery. I’m still in that very same flare. I cannot seem to get into remission this time.

    I don’t know what is to become of me, but this drug carousel that we all seem to be on, is not good for us. I just know it. Our livers, kidneys, hearts, and everything else in our bodies are pretty important. I’m so tired of not knowing what to do…

    Thanks for writing,
    Cheers,
    Bev:)

  2. ShirlMarch 3, 2012 at 6:44 pm #

    Hugs Andie,

    My heart goes out to you. It is so hard to figure out whether the ulcerative colitis causes these systemic issues or the meds. My gastro doctor is encouraging Lialda- less pills. Have been on Asacol since August when hospitalized & diagnosed, although I have been sick since my teen years. My Rheumatologist has me started on Sulfasalazine & got a flare up/ joint pain whammy. I figure my body is trying to adjust but I am not fond of the new side effects. These drugs are really tough on kidneys, pancreas & liver.

    I worry about infectious germs too. That’s a tough call about nursing, but I would think risky especially when you’re in a flare-up and current kidney dysfunction. I work in customer service & people blow their nose…hand over money or credit cards all the time. Lots & lots of hand sanitizer! Not much you can do when coughed or sneezed on etc. I’ve had that too, and I get frustrated with people not even attempting to cover their face.

    I hope Remicade works & with as little adverse effect as possible. Can you take time off work? (consider FMLA forms to protect you) Your employer should be on board for your recovery. Hopefully they are sympathetic, especially since you are in the health care field!

    Keep us posted!
    Shirl

  3. Johnny Drama
    JohnnydramaMarch 3, 2012 at 8:10 pm #

    Andie,
    Thanks for sharing! It’s sounds like you have been through alot!
    I feel your pain and feel so bad hearing what you are going through. I myself am on lialda 3 a day. I was on sulfasalazine 500mg pills which I took 2 tablets 3 times a day… It Sucked taking 6 pills a day. And was very hard considering before I was diagnosed I never took meds. Anyways after diagnosed I had to find a gastrointerogist. She recommended lialda. I take 3 in the morning. The
    Both meds seemed to work the same. The thing a out sulfasalazie,it’s been around for a long time unlike lialda. So the effects are
    Still unknown. I worry about the same thing you are going through… I just turned 21 and also am going into the medical field. So indefinilty worry about being on pills and the side effects and bring around patients and catching diseases and what not since UC makes us weak … I work In the hospital setting and agree on what you go through by seeing patients and knowing that having UC is way worse. I hope you get better and everything works out. I’m on the scd diet also. Recently I have been very stressed and have a mini flare going in right now. So I have been using Canasa rectal suppistorys at night.. I used them when I was diagnosed so it’s been a year…I’ll let you know how they work.. Not the path I wanted to be going down right now,since I was planning on getting off my meds, but I gotta do all I can to prevent this flare from getting me down. Right now it’s just bloody stools, but I’m feeling the pain and recalling the signs from when I was first diagnosed.
    Overall keep fighting. Stick to the diet!!!! And stay as stress free as you can!
    -Johnny drama

    • california karenMarch 4, 2012 at 9:21 am #

      JOHNY DRAMA it is so hard with disease, in new to this and not on any meds yet! but i feel your pain hpoe all goes well soon!

  4. AdamPalmerJuly 6, 2012 at 4:09 pm #

    Hey Andie , just want you to know that I am praying for you. Also, the only way I made it through my flare up was because of the lord God almighty. So I encourage you to do put your trust in Him. Thought you should know. With love, Adam.

  5. GinaSeptember 7, 2012 at 11:03 am #

    Hi Andie :)

    I am so sorry about all that is happening with you!
    you asked if anyone has had a similar reaction….ill share a little of my story:
    I also worry about the long term side effects of such drugs. .
    I just got put on 4 pills of Lialda a day (prob about 2 weeks ago) and I’m wondering what is going on! I’ve been on a 2 pill dose of Lialda since i was diagnosed with UC right before my 15th birthday (the diagnosis being precursor to a complicated and bizarre med history ) which was…eh thinking just turned 22..ha 7 years ago. So, yeah I feel ya being in your 20s and going through all this! Back to Lialda …. I’ve been having weird aches in my arms and itching, chest pain, chills, pain in my lower back, fatigue….i def have some sinus trouble going on right now ..but the cramping in my arms? It feels a little like when I got put on prednisone in 2006 and my legs felt all jelly like and weird which lead to a doctor saying it seems like your allergic to prednisone ..huh, I’m confused.
    Im wondering how you starting noticing problems? and what were some clues that you picked up on that things were off?
    also, i just recently found this website and i have felt very encouraged! I’ve been doing some research about what to eat what not to eat..and have eliminated all dairy and and feel a little better! i’ve never liked the idea of taking medications and i especially don’t feel comfortable when i feel like they are not properly understood before they are thrown at you and the side effects that could happen are never mentioned. I was diagnosed recently with Osteopenia (which i am now off Imuran..which might have been to blame (or lialda?) or the UC itself…i used to drink a gallon of milk a day so i know it wasn’t me not having enough calcium that caused this..and, the doctor said that at my age thats really uncommon..) my eyesight has gotten severely worse and the last time i went to an eye appointment she was concerned how dry my eyes were, my joints kill me now, and during the last colonoscopy i had they found a polyp that turned out to be pre-cancerous. ugh, so I’m def going to take my health in my own hands and research more into natural healing methods. and, i desperately want to find a doctor that will encourage and work with me to find alternate means to these medications that i feel are making the problem i have worse.
    i hope your condition improves very soon! you’ll be in my thoughts!

    -Gina

  6. TambyOctober 17, 2012 at 10:19 am #

    Hi Andie,
    So sorry to hear about your struggle. Am glad that you are sharing. After I found this site I feel like a new me finding people just like me helps so much to nit feel trapped and alone in this. I was on Lialda for a month and my Gi took me off. He was convinced it should have helped more then it was. I am only taking prednisone at 60mgright now trying to get this flare in remission. Past two days seem like it might finally be working. Am wondering if in your experience if he will pet me back on the Lialda once I am out of the flare to keep it under control. HMMM? I also have a IC which is a bladder disease and wonder if the Lialda will some how effect that ? You have forced me to look at both sides and am grateful. Bladder is currently in remission thankfully so I do not want to temp fate..
    Thanks again for sharing…Sending healing thoughts your way.
    Tamby

  7. A girl with colitis goes byJanuary 22, 2013 at 8:54 pm #

    I was diagnosed with UC when I was 19 (23 years ago this July). My husband was diagnosed with UC in November (he’s 44). Doctor put him on Lialda and prednisone at first. He had been having knee pain and general inflammation. The prednisone worked wonders, but after he was done with it and continued with the Lialda, he started getting high fevers (102), almost dibilitating knee and joint pain, night sweats, etc. It got so bad, he could barely stand up or walk. We called the gastroenterologist on call who said he should continue with his meds and take Advil and Tylenol (within a few hours of each other). Didn’t do much except to lower the fever, but that took a while.

    We went to the family doctor who ordered a bunch of blood work; we also called the gastroenterologist who ordered some as well. Family doctor put him on a prednisone taper for 12 days.

    Family doctor called today to say the bloodwork was normal except his liver function was elevated. Naturally, this has freaked me out. I have read Lialda can cause abnormal liver function test results. I’m also wondering if the addition of Tylenol and Advil may be contributing factors. Anyone dealt with this before? We have an appt. with gastro’s physician asst. on Monday. It’s almost impossible to get in with the doctor. We’re very frustrated and are wondering if we should find another doc.

  8. JulieMay 16, 2013 at 6:44 pm #

    I was diagnosed with UC about 15 years ago and up until 2010, I was fine, only 1 flare up that sent me to hospital. About 3 years ago, I was under a lot of stress and got very sick, well it was a very difficult couple of years. The antibiotics and steroids I was on, took a tole on my body, which I believe caused more problems than anything, after 3 hospitalizations, blood transfusions, c difficile(from antibiotic use) and losing a lot of weight(down to 95lbs) I can say that I am on the road to recovery today and thinking of going off my Lialda for a trial period, to see how I do without them. I just want to say that anyone who has this should be taking a good probiotic. I take Flora Stor and Ultimate Flora, a good quality fish oil and a good quality vitamin from the natural food store. Stay away from sugar(feeds bacteria), cows milk, cheese, white bread. I have found that the bread that agrees with me the most is Ezekiel bread. My Ulcerative colitis flares up with sugar, cheese, ice cream because they all feed bacteria. Also, stay away from too much red meat. Anything that causes bad bacteria to flourish will make you sick, that is why it is so important to take probiotics and keep the good bacteria in check…Anyways, this is what got me well, just thought I would add my piece, because I know what a horrible disease this is…

  9. SharonMay 18, 2013 at 6:55 pm #

    I was also diagnosed at 19 and am now 42. I took Asacol for many years and was in a flare taking 4 pills 4x/day. My GI switched me to Lialda but I kept getting worse. Night sweats, severe heaviness and pain in my legs, anemic, 30+ trips to toilet a day, lots of blood and mucous, exhaustion and finally hospital. On day 1 I told ER I need all 4 Lialda taken in AM. Pharmacy sent 1 pill 4xs/day for 1st 2 days. I was having less blood but still 30+ trips to toilet. My spit tasted terrible and the site of even chicken broth made me cry. I hadn’t had solid food in almost 3 weeks. The GI doctor filling in for my vacationing GI was getting annoyed that my labs showed I was in remission but I insisted otherwise. I think he thought I was lying about how many times I went to bathroom. On day3 the pharmacy finally sent all 4 Lialda in the AM. I took them thinking surely this will turn things around. I was also on an IV of 125mg of Prednisone a day,fluids, Flagyl, and awaiting a special bag of nutrients formulated from the results of my labwork. The GI told me I had to at least drink a Boost that day until my nutrients came in. After drinking the Boost, I became deathly ill. My heart and lungs slowed down to barely a hum and I remember thinking”this is what it feels like to die”. I had a complete spiritual experience which was amazing but off topic so I will save it for later. The point is that my regular GI came in the next day and hopped on my bed with my chart. He said he would not leave my room until we figured this out. I was so weak I couldn’t even speak or lift a finger so I listened to him read my chart. He slammed it shut and said”Oh my God, it’s the Lialda” It turns out I do not have the enzyme in my liver to break down the time release modifier. The drug built up in my liver poisoning me. When I received all 4 Lialda at once, I basically overdosed. Believe it or not this is the really short version…I am on Humira now.

  10. shelly in maineMay 19, 2013 at 4:14 am #

    Hi Sharon,
    Thanks for sharing and good luck with the humira. I encourage you to post a story about this so more will read and at a minimum to post on the review page of lialda.
    I hope you have read up on humira so you know what to look for if things go awry. So many side effects, so little Tim, but my fingers are crossed for you.
    Best and well wishes, Shelly

    • shelly in maineMay 19, 2013 at 4:15 am #

      That was time- of course…damn auto correct. Unless you know a little Tim! :-)

  11. SharonMay 19, 2013 at 4:43 am #

    Thanks Shelly. Believe me that after that experience I didn’t want any drugs ever. I stayed in remission for probably a year but could not even take my tried and true Asacol again because of my reaction to the Lialda since they have same chemicals. I was on and off with prednisone for about 9 months when my doctor started to really push Humira. I love my GI and he really listens to me but as I sat in his office, very sick, he convinced me. He said that staying on prolonged dosages of pred actually weakens the immune system further. If anything, I was at a higher risk for illness and infection from that. We discussed Humira at length and decided to try it for at least 6 months to see if I could go into a “deep remission” which I hadn’t had in a long time. I have been on Humira for a year no with no side effects. I was considering weaning off when my new delivery pharmacy screwed up 3 shipments of my shots. I went a week past my scheduled date thinking it wouldn’t matter since I was in complete remission. When my shots finally arrived, I took one. Within a few days I started flaring and have struggled over the last several months even with booster shots. I am finally 90% there. I also take VSL#3DS but not consistently because the powder form is more cumbersome. I have decided to commit to daily probiotics since they have worked in the past. After reading this website, I will also be buying some L-glut on Monday. (btw I am convinced that auto correct is for teens who never learned to spell and resume writing)

  12. shelly in maineMay 19, 2013 at 11:59 am #

    Hi Sharon,
    I totally can relate…I’m a 30+ year diagnosed/symtoms forever, uc’er, 45, been Med free for a year and 10 months and counting! I have a couple of stories on here, but humira was my last regrettable Med. I was allergic the whole time, only to it for 6 months had a heart stress test, but knew i needed it my flare was so bad. I had been on remicade for 3 years before that so i knew i was doomed with the humira from the start! I have now resigned to no more toxic meds. I am intolerant and/or allergic to pretty much all. I am currently getting out of my second major flare (7+ months!), including iritis the first time around. I am keep my fingers toes, etc crossed, but hoping to win another battle!

    I too take the powder vsl3, 1-4 packets depending on where I am. I have added in the renewlife because it has a delayed release capsule. I figure it can only help to mix and match the probiotics. I usually put my vsl in my “power” smoothie for breakfast and lunch or I mix with applesauce..the only other tolerable way to ingest! :-)

    Anyway, the probiotics are a must, fish oil-4 g, my spirutein has an amino glutamine( goes in my smoothie!), vit d, and I see a chiro for Chinese herbs. It’s a constantly changing process for me.o

    Best, Shelly

  13. SharonMay 20, 2013 at 3:43 am #

    Because my flares were so easily controlled for so many years, I never needed to watch my diet carefully and take supplements but the times they are a changin’. I will be adding L-glut this week and continue to tweak and add. I just came out of a flare but feel on the edge of another. Bumping up the VSL#3 to full throttle. Ready to conquer another battle. Best of luck Shelly.

  14. DavidJanuary 20, 2014 at 12:14 pm #

    Hey Andie, I also feel your pain literaly. I also believe the same as Bev I am a victim of Being prescribed Acutane as a teen for acne problems that I have this medical condition as a result of taking that medication. Here us some advise, evey prescription your prescribed byba physician and every proof of pharmacy prescription being filled make a copy and save the proof for as long as you live, because like Accutane they will have side effects you will not know about for many years to come. I went to the hospital clinic where I was prescribed the medication decades ago, they have no legal right to save your medical records and neither does the pharmacy where you filled your prescription for reasons unknown, more than likely they don’t want to be liable. Andie I was recently diagnosed witt ulceritive colitis, and have undergone more tests to see if I have crohn’s disease, my doctor started me I on Lialda as soon as I started taking the medication I stated feeling dazed and also fell stabbing abdominal pain on the right side if my stomach then again in the middle of my stomach, then a few days later had left side kidney pain for the past three days. I stopped taking the medication, my doctors away for a week, waiting for him to get back to see what he thinks and get the results of my other tests to see if I have crohns disease, my doctor stated if it is crohns disease he would have to put me on humera which I know has many serious side effects. Any advice regarding humera from anyone please. Thank Yoy

  15. anaJune 27, 2014 at 12:22 am #

    Don’t take the 4 pills of Lialda all together take 2 in the morning and 2 at bedtime, that helped me.

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