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Lialda Side Effects - Possible Personality Change?

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Posted 12/16/2009 2:03 PM (GMT 0)
I have been an observer of my wife (age 47) for the past 6 years as she has suffered with UC. I am not sure how the UC community would rank the severity of her UC; however, she wakes each day with severe abdominal pain, frequents the bathroom with spasms from 6:30 am to 10:00 am and then suffers mild cramping throughout the day. This occurs eight months out of the year - 4 months she is symptom free. She has been on numerous medications over the last four years and is presently on Lialda. She has been on Lialda religiously everyday (4 per day) for about 2.5 years. Although I am not convinced that the Lialda has done anything for her UC problem, the GI doctor insists that she stay on it to avoid having severe UC symptoms.

I have reviewed the available information on the side effects of Lialda because I suspect that I am seeing a side effect of this drug that is effecting the personality of my wife. Since she has been taking Lialda she has become increasingly irrational and her analytical skills seem to be deteriorating. In addition, she has become more frequently depressed, spiteful, and uncompremizing. This is not her nature - I have known her since college (age 18). On a humerous note, this could be easily attributed to the complaints of a husband in a day in the life of a conventional married couple or even aging , but presently I am convinced that this is not the case: something has changed her personality and I am begining to suspect it is a side effect of the Lialda. I have not seen any information that suggests that this could be happening. I am curious if others have noticed anything like this. Please note that it has crept up very slowly. Any insight would be greatly appreciated.

Posted 12/16/2009 2:30 PM (GMT 0)
Your wife has a wonderful spouse!

Depression and chronic illness go hand and hand. I don't think it's the UC drugs that are changing her personality but I do believe the disease will. As an observer of her UC symptoms you are only seeing about 10% of what she actually goes through 8 months of the year. I would encourage your wife to get professional help. I was depressed my last year or so with UC and chalked it up to the prednisone I was taking. However, I ended up having surgery for UC and once totally healthy and almost a year off prednisone I was depressed. I was put on an antidepressant which made all the difference in the world. Within a few weeks I was back to my old self.

Sue
Posted 12/16/2009 2:37 PM (GMT 0)
I really don't think that personality changes can be caused by Lialda. Steroids can do it though. Is she also on prednisone? I was on Lialda for a little over two years. I also took 4 a day for most of that time. I personally never experienced any psychological side effects and I have never heard of anyone else who did either.

I also would like to say that it sounds like her disease is not very well managed if she is flaring 8 months out of the year. Being that sick most of the time could really affect her mood and psychological well being. I would suspect being so sick is more likely to be making her depressed than the Lialda. When she is flaring what other drugs does she take?
Posted 12/16/2009 2:58 PM (GMT 0)
Well, after having this cruel disease for over a decade, my personality certainly has changed too. It is the nature of every chronic disease I guess and just imagine your wife has to deal with the pain and the symptoms of this disease every day. It really wrecks your nerves and yeah, I admit, it sometimes makes me hopeless and you see no end to it and can't remember the good days and don't believe that you will ever have a good day again. Just alone the fact that this is a lifelong disease is pretty grim and like others have said, your wife's disease seems poorly managed. Did she have a colonoscopy recently, so there is insight to the extent of the UC?

I hope you and your wife will be able to manage her symptoms better and yes, you are very caring and supportive and that is really really great!

Keep us posted!
Posted 12/16/2009 3:01 PM (GMT 0)
Thanks for your reply - You may be right. She is not taking any other medication other than the Lialda (4 times a day). Just a side note - I have seen that a side effect from Lialda can be "confusion" and "personality change" (Web MD); however, this is the only thing anywhere that I have found - only "confusion" and "personality change" no detail or further explaination. I agree with the depression diagnosis - I think her situation is a reason for depression, but I do believe, although I am not any type of mental health professional,  that the depression is one thing - the irrationality and analytical functions are something differet than the depression. She has always been a wizard with numbers - quickly making calculations in her head (additions, subtractions, percentages, etc.). She can barely add accurately now. She has seen several mental health professionals - anti-depressents have been the suggestion - they work but she does not like using them because she feels sedated. It may be time to find another doctor (it will be our fifth). We are in a very metropolitan area with numerous health care options. We have excellent health insurance coverage - It has been my expereience that the problem with the doctors is that each UC case has some very specific characteristics with a wide range sucess with different treatments and diets. We are still looking for the most feasible treatment for our situation. It always amazes me the variability in the doctors recommendations - they are often 180 degrees apart.
Posted 12/16/2009 3:14 PM (GMT 0)
Based on her last colonoscopy (6 months ago), she had no sign of UC - she was in a remision period (typically about 4 months for her). Prior to that, a colonoscopy (a little over a year ago), her UC is in the lower part of her colon only and apparnetly only on one side - so it appeared to be mild. I asume that the degree of "flare" depends on the extent (area) of the UC in the colon.

Posted 12/16/2009 3:35 PM (GMT 0)
UC is very unpredictable and even when the colon shows little to no sign of the disease some UCers can have horrible UC symptoms. In my case my UC was limited to a small patch about 2cm up in my rectum. That small patch caused me such misery that I opted for surgery. So, even though doctors may say that her case looks mild, it's really the symptoms that should be treated, and not the appearance.

Sue
Posted 12/16/2009 3:56 PM (GMT 0)
As a former mental health professional, I can tell you that irritability, loss of reasoning ability, poor memory and flawed judgement can all be symptoms of deep depression. I would suggest you encourage her to see both a psychiatrist and a counselor. It's bad enough to be so sick, but from personal experience I can tell you being deeply depressed at the same time makes it twice as bad.

Your wife is lucky to have you as her support!
Posted 12/16/2009 4:35 PM (GMT 0)
Thank you for your reply Judy - Remicade?? We will check into that.

Posted 12/16/2009 4:38 PM (GMT 0)
I don't have much to add beyond what the others have said. I definitely agree that it's likely due to her UC and not the Lialda. When a drug is in the testing phase, patients who are in the drug study have to write down everything they are experiencing at the time. It's impossible to know if it's because of the medication or because of the disease.

In addition to finding a psychiatrist and a therapist, I think your wife might benefit from a new GI. She's still having symptoms that interrupt her life, so maybe it's time to try a new medicaiton. I would personally try adding a rectal med first (before moving on to the "bigger" drugs) and a probiotic supplement, to see if any of that helps.

Good luck!

You could also encourage your wife to become a member here. If you'd like to delete your posts before doing so, that's fine!
Posted 12/16/2009 5:33 PM (GMT 0)
For me, Lialda alone did not ever get me out of a bad flare. Once my flares are controlled the Lialda helped keep me in remission longer. It does not sound like Lialda alone in enough for your wife. Maybe her doctor can prescribe something additional or as you said it might be time to go to another GI.
Posted 12/16/2009 5:46 PM (GMT 0)
Therapy for her and separately for both will help the psychological issues.

Is her UC throughout her colon and when it's doing well it's limited to the rectum?

She should really be using rectal meds as well to deal with the lower inflammation and help keep her flares limited and hopefully less frequently or at least very mild.

quincy
Posted 8/15/2010 3:00 PM (GMT 0)
Am wondering the same. Lialda has done wonders in helping with my latest flare but I'm having side effects that must be due to it... lower back pain, apathy, fatigue, joint pain. Yes, fatigue can be due to the UC, but the joint pain and lower back pain are new, and I think my mood has been affected. Definitely feel more moody, irritable, etc...
Posted 8/15/2010 3:28 PM (GMT 0)
You are a very good spouse! I hate this disease and it makes me very angry/bitter/depressed that I am forced to deal w/ it, especially when I should be enjoying my little one etc.... I do too, think she needs a new GI who will prescribe rectal meds, especially since her inflammation is low. Also therapist is a good idea too. Sorry we all have to deal w/ this, we all just do the best we can and some of us get dealt better or worse hands than others. Good luck.
B
Posted 10/6/2010 9:20 PM (GMT 0)
I did a search on Lialda & depression, I feel like I've been hit with a brick & only have been on it 2-3 weeks...my physical symptoms are very manageable now, I do not have the chronic stomach pain people talk about so I feel fortunate & I cannot blame pain for my mental state...then again...I also am 47, and menopause or peri- meno (though I'm still regular) is a very real possibility, I'm wondering if you have considered this for your wife? Cognitive issues are common with meno, forgetfulness being very common.
Posted 1/27/2011 3:37 AM (GMT 0)
If your wife is under treated it is possible that she was never properly tested for food intolerances and Celiac disease, which Frequently cause personality changes, anxiety, agitation, frustration, crankiness, loss of reasoning ability, as wel as severe gastric symptoms, which if combined with a bout w/the very common H. Pylori bacteria which causes ulcers (8 out of 10 bodies examined postmortem, from Harvard medical school, were found to have this bacteria!), could easily mimic chronic UC.
I experienced drastic relief after decades of dairy and wheat/gluten intolerances, by severe restrictions and a Rotation diet which finally identified my trigger foods. After being "clean" for 6 months, the offending foods caused a severe and obvious "meltdown" on my part, and now I take my own food wherever I go or eat at specialty healthy/natural restaurants who are extremely cautious w/allergens and offer many alternative wheat/dairy/nut free foods.
Having my sanity and health back finally is totally worth the vigilance, extra work and sacrifices.
It may be worth trying the diet despite test results, which are notoriously unreliable.
Best of Luck to You Both*
Posted 11/9/2011 12:04 AM (GMT 0)
It's been 2 years since the original post and I hope your wife is doing better. She is lucky to have a husband like you for support. My second husband as been the same way with me.

I've had UC for 20+ years and it has been in remission for about half that tiime, on and off. Most recently, about 2 years ago, after the death of my father and subsequent serious illness of my mother, my UC has flaired up again like never before. I had my annual colonoscopy a few days ago and my Dr. (Who is the same GI I've had the whole time) changed me to Lialda. Since starting Lialda I have had nothing but severe abdominal pain, more D with more blood, fever, headache and several other side effects. Needless to say, I'm calling my doctor tomorrow and going back on Asacol HD.

When I was first diagnosed in the early 90's I was put on Azulfadine which worked for many years. Then switched to regular Asacol, which also worked for the next 10 years. 2 years ago with my most recent flare up, he changed me to Asacol HD. For the past 2 years however my UC has just been getting worse and worse.

I am seriously considering the operation now that it can be done laprasopically. Has anyone undergone this surgery and has it been a positive thing for you?

Also, tobacco use does help relieve the symptoms as that's when I was diagnosed after quitting smoking. I unfortunately started smoking again about 6 years ago after my divorce. I have successfully quit again but this time I am using nicotine replacement therapy with the patch. Hard to tell right now if it's working or not for my UC but I haven't had a cigarette in over a month.
Posted 11/9/2011 12:46 AM (GMT 0)
Ontop of what everyone else has already said... Has she had a vitamin panel done recently? She might be deficient in certain vitamins which may be affecting her emotions/personality.
Posted 3/4/2014 4:58 PM (GMT 0)
Stopain,

I'm not sure if your still wondering about personality changes with your wife or not. I recently began Lialda in Jan. 2014. I took it for over a month and the Dr. stopped it. I was having dreams about killing myself. I've never been depressed before and certainly never had dreams like that before. Within a week of stopping, the dreams went away. I still take a probiotic and uceris (a new corticosteroid specifically for uc and little systemic side effects). I have an app. on Thursday to discuss different treatment options.

Newly diagnosed: 01/2014- PANCA assay; treatment resistant ulcerative colitis.
fibromyalgia: 2012
anitphospholipid syndrome with chronic anticoagulation treatment: 2007 (dx after pulmonary embolism after C-section)
hypothyroidism: 1998
Posted 1/20/2016 10:17 PM (GMT 0)
I know this post was made a long time ago, but I'm hoping I can help with my brother's story.

My brother has a very severe case of Ulcerative Colitis, diagnosed 2 years ago. He is 6'1" and was 185 lbs. When he first got sick, he dropped down to 135 lbs. The doctor told him he would be on medication for the rest of his life, and at some point, would probably have to have his colon removed. He initially took Prednisone, but refused to believe the doctor regarding daily drugs.

As stubborn and holistic as he is, he never took any of the prescription drugs. He did an ENORMOUS amount of research before finding SCD (Specific Carbohydrate Diet). Since his initial flare, and starting SCD, he has been COMPLETELY FREE of UC symptoms for a year and 8 months! SCD is not a diet you loosely follow. You must follow it to the T. He did the intro chicken soup diet for 2 weeks. He was very strict, never ate out, cooked all his own meals, and stayed away from every grain, starch, sugar and "do not eat" item on the list. He was feeling even better than he did before he was sick.

Three weeks ago, he started having stomach cramps and bloody diarrhea again. Come to find out, over the course of two weeks he had eaten two huge bags of pistachios without checking the label. There was a ton of added sugar and "natural" flavoring. Needless to say, we are back at square one.

I found this forum reading about Lialda and it's side effects. His plan is to take Lialda to get over this flare. Once he's well, we will ditch it and use The Briggs Protocol for treating Ulcerative Colitis, and try a FMT (Fecal Matter Transplant). The FMT is a procedure in which fecal matter, or stool, is collected from a tested donor, mixed with a saline or other solution, strained, and placed in a patient, by colonoscopy, endoscopy, sigmoidoscopy, or enema. The purpose of fecal transplant is to replace good bacteria that has been killed or suppressed, usually by the use of antibiotics, causing bad bacteria to over-populate the colon. FMTs are not done by doctors in the United States, unless you have C-diff. A lot of people with UC have been completely cured by doing FMTs, either themselves, or travelling to Australia or Europe. I'll list some links at the bottom with research and info on FMT. The reason it’s so popular is that it has worked for many, is science based and does not pretend to be a silver bullet.

I know the SCD works if you are patient, thorough, and take it seriously! However, if you have one little mess up, you'll have a huge flare. Which is why we are trying the FMT... cure the cause of the problem by replacing the good bacteria. "Briggs Protocol" talks a lot about this and the root of the problem. Michael Briggs holds a PHD in Physics, works as a university lecturer and has recovered from 12 years of Ulcerative Colitis using this protocol.

I hope this sheds some light for those of you (or your loved ones) who think you have to be on prescription drugs your whole life. Don't change who you are or cause other side-effects in your body.

SCD: http://www.breakingtheviciouscycle.info/
SCD legal/illegal list: http://www.breakingtheviciouscycle.info/legal/listing/
SCD Buddy is a phone app you can download for Androids or SCD Recipes for iPhone
Briggs Protocol: http://thepowerofpoop.com/briggs-protocol/

** Briggs Protocol: http://thepowerofpoop.com/briggs-protocol/
Posted 1/21/2016 2:45 AM (GMT 0)
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