I have officially been off Lialda, after my last flareup, since about 2013.
How did I do it? With the assistance of a naturopathic doctor.
Why did I do it? Have you seen the side effects? If not, let me enlighten you:
Lialda may cause serious side effects, including:
- Kidney problems
- Liver problems
- A condition that may be hard to tell apart from a UC flare. Call the doctor right away if you experience any of the following symptoms: cramping, stomach ache, bloody diarrhea, fever, headache, and rash
- Heart-related allergic reactions, such as inflammation of the heart muscle (myocarditis) or the lining of the heart (pericarditis)
The most common side effects reported in clinical studies of Lialda were:
- Ulcerative colitis (ummm..ok)
- Headache
- Gas
- Abnormal liver function test results
- Stomach ache
In clinical studies of Lialda, inflammation of the pancreas also occurred.
and…
the following adverse reactions were reported in two controlled trials:
Cardiac Disorder: tachycardia
Vascular Disorders: hypertension, hypotension
Skin and Subcutaneous Tissue Disorders: acne, prurigo, rash, urticaria
Gastrointestinal Disorders: abdominal distention, colitis, diarrhea, pancreatitis, rectal polyp, vomiting
Investigations: decreased platelet count
Musculoskeletal and Connective Tissue Disorders: arthralgia, back pain
Nervous System Disorders: somnolence, tremor
Respiratory, Thoracic and Mediastinal Disorders: pharyngolaryngeal pain
General Disorders and Administrative Site Disorders: asthenia, face edema, fatigue,pyrexia
Ear and Labyrinth Disorders: ear pain
Whew! That’s a lot! Now, don’t get me wrong. I don’t believe in tossing out the whole entire idea of using pharmaceutical drugs, I just don’t advocate long-term use of them if you can help it.
If there is a situation where immediate intervention is needed, sometimes that is not the right time to go experimenting with something alternative and/or unknown.
But, if you do have to get on some type of medication I do believe in trying to find alternative options right away with the help of a knowledgeable healthcare professional so you’re not on the medication long term.
Pharmaceutical drugs can help in many situations, especially emergencies, but, unfortunately, they can also cause more harm than good. You have to know when to say no and listen to your own body. It will tell you what to do next.
If, for some reason, you need to stay on certain medications for conditions that are not common or life-threatening you can always make sure you’re healthy in other ways. Explore healing foods and/or supplements (ones that don’t interfere with your medication) that can help keep the medication side effects to a minimum and keep your body strong.
I am blessed that I was able to come off of Lialda so quickly and I’ve never felt better.
what did you use in place of the lialda?
Hi Meredith – I worked with a naturopathic doctor and she recommended certain supplements for me including a custom made tonic and herbal tea, gastrex, and other things.
Serena
What holistic products were used to help stop taking lialda.
Hi – I worked with a naturopathic doctor who helped me as well. But I think it was toward the end of me needing Lialda anyway so that helped as my body was not so dependent on it at that time.
Was wondering how I find a naturopathy doc to help me with my uc. I am on lialda and as of late it seems not to be working, but that could be the med itself. I live in las vegas nevada. Thanks in advance for any info you could provide.
Will
Hi William – honestly I just started with a search online. I searched naturopaths in my state and went from there. Visiting their websites helped, too, if they had one. Once you narrow down one or two, make an appointment to see how you like them before actually working with them. Good luck and let me know if you have any more questions.
Thank you for sharing your experience! I am 4 weeks into a 12 week program with a Nutritionist using Nutrition Response Testing and whole food supplements.
I had neglected my Lialda for the past few weeks. I have taken two doses this week and noticed some symptoms not present for the past two months… crampy ache in my left side, mucous diahrrea with little blood, and felt a little fatigue today. I’m going to consult my nutritionist and follow up with my gastroenterologist. My gastro physician is happy with the progress I’ve made, but doesn’t see a positive outlook without medication to treat my disease. But, I believe in the benefits of nutrition and the potential for a body, my body, to heal itself… atleast partially. It’s a route to wellness I have never explored! I’m super excited and confident in this route. However, I am not comfortable nor confident my gastro physician is really on board. Any advice?
Hi Christie – I’m so glad to hear you are working with a nutritionist! That’s always fantastic! I’m sorry to hear that you are also experiencing symptoms at the same time. I have had doctors not on board with the “no medications”, but what I eventually do is keep expressing my thoughts to them based on my own body’s signals or I ended up finding another doctor, which is what you may have to do. You may also choose to just stay with your current doctor and work with a naturopath separately which is something that I also did. I do also believe the body has the ability to heal itself with nutrition and other things like stress management so it may take some time, but I believe you can do it. Good luck with everything and keep me posted!
I was diagnosed with Crohn’s disease 21 years ago. I’ve been put on several medications over the years. I’ve been taking Lialda for the past 8 years… I think. My Crohn’s has pretty much been in remission since then. I’ve also been taking Imran for the past few years too. My number one supplement on top of my multi vitamins is fish oil- I swear by it. I would like to get off all prescriptions but am afraid of cancer development.
Hi Michelle – do you feel you have been in remission because of the medications or regardless of them? I also believe the right supplements like a multi vitamin and fish oil play a huge role. Nutrient absorption, nutrition itself, and Crohn’s disease go hand in hand – so every little bit helps. I also take a vitamin D supplement too. I am not sure if cancer development has a direct relationship to getting off prescriptions. Cancer development as far as I know had to do with the disease itself. Regardless, if you want to get off all prescriptions, you would have to do it gradually with your doctor, seeing you have been on them for so long and there’s 2 of them. I believe you can do it, it just may take some time. I wish you much luck with it, though. Please keep me posted with progress!
I have been on Lialda for 9 months for UC. I take 2 pills per day and would desperately like to get off the medicine. I have been in remission since being on the Lialda but have a lot of sinus problems and ear problems along with dizziness since being on this medicine.,Did you have any problems with stopping the Lualda?
Hi Karen – sorry to hear all the problems you have been having. I can’t say that I have had any issues with the Lialda and without it. Have you tried speaking to your doctor about it?
I thank all of you who have posted, as all your posts have given me a lot of insight. I just started Lialda yesterday and it’s helpful to know what may come up and what I can consider to get off this. This is not something I want to take, but after 1 yr of “D” and being basically locked to my bathroom for a yr now, I’m glad to try something that look like it may stop the “D”, but at the same time, I do prefer herbs. So I can looking for alternatives and found your web site. I wish you the best of luck and hope your alternatives work for you and eventually for me too!
Hi Jan – I am glad you found this post and everyone’s input helpful! So far so good with my alternatives. I don’t take them as regularly as I used to, but I do still have them in my possession along with some probiotics. I do hope you are able to get off Lialda soon and I hope you are able to find alternatives to work for you, too. Wish you the best of luck!
Serena,
Just a word of caution based off of some of your previous statements. First off, your heart is in the right place and I do believe it is worth exploring getting off drugs like Lialda. However, contrary to what you said earlier, there is data showing that there is an increase in flares without treatment (Lialda ect) and that increase in flares is directly correlated to higher risk for colon cancer. Also, each flare you get increases the chance of a chronic flare leading to surgery. Each case is so different from the next that it might be dangerous to over-encourage some to get off the drugs. PS: this is coming from someone that strongly believes in the value of homeopathic medicine, paleo diets, and the healing power of foods.
Hi Craig, thanks for your comment. What I said earlier about an increase of flares with Lialda came from the literature itself as a side effect, not actually from me. I am very familiar with each case being different and don’t believe I am over encouraging anyone to get off of anything. If medication is what you need right now then so be it, which is also what I stated above. HOWEVER, I do believe that said medication, regardless of the reason you are taking it, can actually cause harm in other areas of your body while trying to take care of the very reason you are taking it in the first place, hence support of natural remedies may be in order to counteract the potent (and yes, they are often times very potent) effects of the medication. And in the long run if you are able to get off of said medication (whether it’s Lialda or cholesterol meds) while working with a qualified healthcare professional then why not encourage that and let people know it IS possible?