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Crohn's Disease Forum » Your Story » Nervous about taking Lialda


02-15-2015, 05:34 PM   #1
Kimelizabeth
 
Join Date: Feb 2015
Location: Pensacola, Florida
Nervous about taking Lialda

Hello and so glad to have found this group. I was just diagnosed on Tuesday with Microscopic Colitis with mixed features of Collagenous Colitis and Lymphocytic Colitis after 8 months of hmmmmm, we don't know what's wrong with you. Didn't get to see the M.D., but the P.A. had no information to share and wanted to start me on Budesonide but it was going to cost $1800 for a six week regimen, (HSA with high deductible) so she gave me Lialda and Glycopyrrolate. After a google search on the Glycopyrrolate I decided that medication is not worth the potential side effects and the cramping has not been that bad. After reading through many of the posts here I was hoping someone could give me their experience (good or bad) with this medication.
I have been gluten free for six weeks, went dairy free yesterday and also have Hashimotos. Does anyone have any advice/recommendations on diet/elimination.
Feeling very overwhelmed trying to find information on my new diagnosis.
Thank you in advance for any feedback.
Kim
02-15-2015, 05:50 PM   #2
nogutsnoglory
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I haven't taken Lialda but ive been on Apriso and Pentasa which are similar. They are pretty safe drugs for the most part. It's by far the safest of the IBD drugs outside of Low Dose Naltrexone. I'm tagging David as he has showdowns with this form of IBD.
02-15-2015, 08:05 PM   #3
Justanothercp
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I have Crohns. I've been on Lialda for years without any problem.
I switched to Paleo diet about 6 mo ago, and I swear it seems to make a huge difference in how I feel. I'll warn you though, if you have trouble maintaining weight, Paleo will make that worse.
02-16-2015, 02:54 AM   #4
free_spirit24
 
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I have Crohn's disease, was recently diagnosed on 2/13. When I had my colonoscopy on 2/4 they prescribed me Lialda which cost me $436.04 for 60 pills, take 2 every day.

I have realized the medication is helping better regulate me, I'm no longer running to the bathroom 15+ times a day anymore, I'm about down to 4-6x. The medicine also seems to help with the pain, as I'm still under a flare up. I have not been given any type of diet as of yet, I have a Pill Cam procedure scheduled in April to see if my Crohn's is in my intestines to which we will find out then.
02-16-2015, 09:36 AM   #5
Justanothercp
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I have Crohn's disease, was recently diagnosed on 2/13. When I had my colonoscopy on 2/4 they prescribed me Lialda which cost me $436.04 for 60 pills, take 2 every day.

I have realized the medication is helping better regulate me, I'm no longer running to the bathroom 15+ times a day anymore, I'm about down to 4-6x. The medicine also seems to help with the pain, as I'm still under a flare up. I have not been given any type of diet as of yet, I have a Pill Cam procedure scheduled in April to see if my Crohn's is in my intestines to which we will find out then.
Free Spirit, most doctors won't given you any diet advice (or very little) you will need to research and probably experiment on what works best for you. I found the Paleo diet made a huge difference for me.
Good luck!
02-16-2015, 03:46 PM   #6
wildbill_52280
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read breaking the vicious cycle/Specific carbohydrate diet. some of the advice in this book has helped me while some has not. avoid disacharides like sucrose and lactose can reduce symptoms. Avoiding some starches may also help with symptoms. It suggests making homemade yogurt as well.
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02-16-2015, 05:52 PM   #7
Kimelizabeth
 
Join Date: Feb 2015
Location: Pensacola, Florida
Thank you all so much for the feedback and you're right Justanothercp, the physician didn't want to discuss diet or food allergies/sensitivities whatsover!
wildbill_52280-thank you for the links.
Will begin the research odyssey.
02-22-2015, 10:05 AM   #8
David
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Hi Kim,

I was diagnosed with lymphocytic colitis. What are your symptoms?

The glycopyrrolate was a very interesting choice. Did the PA explain their reasoning for that?
02-25-2015, 01:40 PM   #9
Kimelizabeth
 
Join Date: Feb 2015
Location: Pensacola, Florida
Hi David,
My symptoms are watery diarrhea like colonoscopy prep watery. Have not had a solid BM since last June. Finally had a colonoscopy in December and they did biopsies to confirm the diagnosis. I have been off gluten since January and been dairy free for about 2 weeks now. The PA prescribed (over the phone with no consultation) the glycopyrrolate for stomach cramping which I experience occassionally but it's never so bad that I have felt I need to be medicated, especially with the medication she prescribed.
Have you tried Liada for your symptoms? It appears that everyone goes out of remission once they stop the meds.
Thanks for any guidance,
Kim
02-26-2015, 06:54 PM   #10
David
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Hi Kim,

I was able to achieve remission without medication but it doesn't sound like my symptoms were as severe as yours.

Did they do an endoscopy and any small bowel imaging studies in addition to the colonoscopy?
03-19-2015, 11:49 AM   #11
Kimelizabeth
 
Join Date: Feb 2015
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Hi David,
No endoscopy and no other tests. Just colonoscopy and biopsies. No polyps found.
03-19-2015, 12:01 PM   #12
David
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If I was in your boat, I think I'd want an endoscopy done as well. Why?

There does seem to be a particular link between microscopic colitis and the autoimmune disease celiac sprue, also known as celiac disease. Caused by an immunologic reaction of the intestine to wheat, barley, rye, and oats, celiac sprue is a digestive disease that damages the small intestine and interferes with absorption of nutrients. Its hallmarks are chronic diarrhea and weight loss.

"Celiac sprue is underdiagnosed in this country," says Dr. Valentine. "That's because not everyone who has this disease has all the classic symptoms. Some people with celiac sprue have microscopic tissue changes that can look a lot like microscopic colitis, so there does seem to be some clinical overlap between the two conditions." It is important to exclude celiac disease as a cause or contributor to the diarrhea in patients with microscopic colitis.

When it comes to collagenous colitis, the average age at onset is in the 50s -- and is predominantly in women. "In fact," notes Dr. Valentine, "some studies have shown that women with celiac disease outnumber men by five to one or more. That's not totally surprising, since autoimmune diseases tend to be more common in women. In the case of lymphocytic colitis, however, the condition is more evenly distributed between men and women. Age at onset tends to be a bit later, with diagnosis usually in the 60s."
http://www.ccfa.org/resources/microscopic-colitis.html
03-19-2015, 01:30 PM   #13
Kimelizabeth
 
Join Date: Feb 2015
Location: Pensacola, Florida
I have been gluten free for about two months now. Decided to see if I was actually sensitive to it and yes, I was in the bathroom for two days, so I will remain gluten free probably for the rest of my life. I also have Hashimoto's Thyroiditis and needed to be gluten free anyway.
Since there is really no cure for Celiac, how important is it to have the Dx if one is going to be Gluten Free?
03-19-2015, 01:35 PM   #14
wildbill_52280
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Lialda is one of the safest drugs there is, i have taken it for a year now had crohn's for 6 years.

Check the book breaking the vicious cycle which covers the specific carbohydrate diet. It is a diet developed by observations by scientists/doctors of patients with Gi issues and which foods seem to agree with them. it can help manage symptoms.
03-19-2015, 01:42 PM   #15
Kimelizabeth
 
Join Date: Feb 2015
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I currently can't handle any vegetables, even cooked to death. How do I begin Paleo or SCD not being able to eat vegetables? I can't even handle a ripe avacado or bananna. No problem with beef, chicken, shrimp or fish.
03-19-2015, 02:51 PM   #16
FrozenGirl
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I have been on Lialda for over a year. I can't say I have noticed any real side effect. My docotor even said he read some research saying.it may have a slightly protective effect against colon cancer in those with ibd.
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03-20-2015, 12:20 PM   #17
amber_griffin
 
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For those on Lialda, there is a program from the makers of Lialda... that will enroll you in a pharmacy savings card program. After the insurance and then the Lialda card (you have to resign up every year) we pay $10 dollars for it. In the U.S. Anyways.
03-24-2015, 08:05 PM   #18
free_spirit24
 
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With my insurance and the Lialda prescription card, I pay $35.00/month
03-24-2015, 09:27 PM   #19
Crohns08
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I currently can't handle any vegetables, even cooked to death. How do I begin Paleo or SCD not being able to eat vegetables? I can't even handle a ripe avacado or bananna. No problem with beef, chicken, shrimp or fish.
There are different phases to the SCD. If you read Elaine's book, "Breaking the Vicious Cycle" it lays out the science and different phases to the diet and exactly how to follow it for the best results.
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