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Posted 1/6/2016 2:42 PM (GMT 0)
Hi

New to the forum - just was wondering about the medication mezavant/lialda

When people write on the forum "I experienced virtually no symptoms" what does that mean exactly?

I have been on this medication for about a year now and I have experiences these side effects:

- Severe pounding headache and stiff neck lasting and gradually decreasing after a few weeks
- Running nose
- After taking a dose of the medication I'd immediately fall asleep o_o for an hour
- nausea
- Cuts on corner of my lips that heal and then come back
- Cough that lasted months
- Hair loss (noticible, not really transient), Also, I went to my salon and for all those with curly hair my entire curl pattern in the back of my hair changed - looser curls!! (she said she hasn't seen this in all her years working in the salon)
- My hands would feel spastic and extremely cold, this lasted few weeks

I thought all those side effects were just a given for anyone taking medication and their body just trying to get used to it...? So I just bore it with patience.

Went to my GI, he asked any side effects? I'm like nope. But that was because I thought all the above was a given for anyone taking this medication lol.

After six months, anxiety started to creep in...at first I thought it was just me, but then it got worse and worse after taking my regular doses 2tabs/2xday my head would become throbby and then palpitations then anxiety....then completely go away until I take the next dose. Now its unbearable. I plan my day around the medication side effect.

Question: Do some really experience no side effects?

Should I switch to some other medication? Has people experienced a decrease in symptoms when decreasing the dosage?

Thanks,
Posted 1/6/2016 4:05 PM (GMT 0)
Have you had blood tests to check for all B vitamins, vitamin D, zinc, etc?

Just know that it would take many, many hours before any of the pills even start to release...so it wouldn't be something that would be from the mesalamine. yes, it's mostly topical, but if you have an extreme sensitivity to salicylates...the small amount in your body could give you a reaction.

Have you had your blood pressure checked? The cycle of anxiety and reaction can play a part if we're afraid to the point of expectation. I'm not saying that this is what's happening...but it's very difficult to separate once it's set in action. Been there big-time.

Are you flaring at this point? and what symptoms are you having.
You're on a relatively low dosage...I would suggest you try splitting the dosage of one twice a day with food.

welcome to the forum.

q
Posted 1/6/2016 4:44 PM (GMT 0)
When I took lialda, it was no different than drinking a glass of water. No side effects.

"Headache has been reported in clinical trials evaluating mesalamine, with an incidence of approximately 6.5%"mobile.journals.lww.com/jpgn/_layouts/oaks.journals.mobile/articleviewer.aspx?year=2001&issue=09000&article=00021#ath

Runny nose is listed as a potential side effect that may go away as your body adjusts to your medication.

Hair loss or thinning is common compliant of uc patients. about 33 percent of patients experience it with or without medications. It's listed as a medication side effect of lialda/mezavant, and all of the uc medications. Low vitamin D and low iron levels (anemia) are often cited as probable causes of hair loss in uc patients. www.ncbi.nlm.nih.gov/pmc/articles/PMC4284339/?report=classic

Fatigue is a common compliant of uc patients with or without medications. Anema (low iron) can cause fatigue. With uc, your body is constantly attacking itself, and healing a process that xan be exhausting.

Nausea can be a symptom of uc and also of any uc medication.
Posted 1/6/2016 4:58 PM (GMT 0)

quincy said...
Have you had blood tests to check for all B vitamins, vitamin D, zinc, etc?

Just know that it would take many, many hours before any of the pills even start to release...so it wouldn't be something that would be from the mesalamine. yes, it's mostly topical, but if you have an extreme sensitivity to salicylates...the small amount in your body could give you a reaction.

Have you had your blood pressure checked? The cycle of anxiety and reaction can play a part if we're afraid to the point of expectation. I'm not saying that this is what's happening...but it's very difficult to separate once it's set in action. Been there big-time.

Are you flaring at this point? and what symptoms are you having.
You're on a relatively low dosage...I would suggest you try splitting the dosage of one twice a day with food.

welcome to the forum.

q

Hi Quincy,

Thank you!

This has been my first time ever taking medication, so when I got the prescription I thought 1 tab/4X a day. I had been doing that for about 6 months, then I realized it was getting difficult and changed it to 2tab/2X a day. That is when my anxiousness got worse imo.

I am symptom free, have 1 stool every 2 days or 1 a day. They are never really fully formed but I think its because of the medication tbh. I am ok with not a fully formed stool.

Did a blood test and I am fine.
Posted 1/6/2016 5:04 PM (GMT 0)

iPoop said...
When I took lialda, it was no different than drinking a glass of water. No side effects.

"Headache has been reported in clinical trials evaluating mesalamine, with an incidence of approximately 6.5%"mobile.journals.lww.com/jpgn/_layouts/oaks.journals.mobile/articleviewer.aspx?year=2001&issue=09000&article=00021#ath

Runny nose is listed as a potential side effect that may go away as your body adjusts to your medication.

Hair loss or thinning is common compliant of uc patients. about 33 percent of patients experience it with or without medications. It's listed as a medication side effect of lialda/mezavant, and all of the uc medications. Low vitamin D and low iron levels (anemia) are often cited as probable causes of hair loss in uc patients. www.ncbi.nlm.nih.gov/pmc/articles/PMC4284339/?report=classic

Fatigue is a common compliant of uc patients with or without medications. Anema (low iron) can cause fatigue. With uc, your body is constantly attacking itself, and healing a process that xan be exhausting.

Nausea can be a symptom of uc and also of any uc medication.

Wow, Fascinating. Had no idea people took this medication with no side effects whatsoever. Pretty sure that many of the side effects are due to the medication because I've flared before without medication and have not experienced what I mentioned above.

Post Edited (eastafrocdn) : 1/6/2016 10:08:02 AM (GMT-7)

Posted 1/6/2016 5:26 PM (GMT 0)
Hi! I am on Lialda.. Which is costing me $500.00/ month now since the New Year has just started and have a 3200 deductible ... It seems to be helping my flare but am also on Humira weekly and 20 mg of Prednisone. The major side effect I have is hair loss which every time I wash my hair about 300 hairs come out and I find hair all over my house!!! When I comb my wet hair.. I start screaming..wondering if I eventually will need a wig..
Good luck... This disease is a tough one to deal with.. I am going to try bio- feedback to see if my anxiety could be lessened. I know many of the meds have side effects we wish weren't there.. the the more we stress .. can only make our UC worse. There is definitely a mind- body connection. I have been in a flare since June and have had this disease for 13 years. The Prednisone blimped me out.. am 15 pounds heavier with a moon face. I still would rather have side effects from drugs, than have a colectemy. I pray that we all go into remission and that someday they will find a cure. Good luck!!!!
Posted 1/6/2016 6:48 PM (GMT 0)

Carioke65 said...
Hi! I am on Lialda.. Which is costing me $500.00/ month now since the New Year has just started and have a 3200 deductible ... It seems to be helping my flare but am also on Humira weekly and 20 mg of Prednisone. The major side effect I have is hair loss which every time I wash my hair about 300 hairs come out and I find hair all over my house!!! When I comb my wet hair.. I start screaming..wondering if I eventually will need a wig..
Good luck... This disease is a tough one to deal with.. I am going to try bio- feedback to see if my anxiety could be lessened. I know many of the meds have side effects we wish weren't there.. the the more we stress .. can only make our UC worse. There is definitely a mind- body connection. I have been in a flare since June and have had this disease for 13 years. The Prednisone blimped me out.. am 15 pounds heavier with a moon face. I still would rather have side effects from drugs, than have a colectemy. I pray that we all go into remission and that someday they will find a cure. Good luck!!!!

Thanks for the comment,

I lost chunks of hair around the edges after a few months on Lialda, then it stopped. Few months later it started to grow in again. Now its falling out so much a year later! I try to avoid too much force because no matter how many times I comb, there will always be hair coming out. Sigh...
Posted 1/6/2016 7:05 PM (GMT 0)
I had tingly feet from colozal along with weird colored skin. Once I switched to Lialda, I had zero side effects.
Posted 1/6/2016 7:10 PM (GMT 0)

Uniform Charlie said...
I had tingly feet from colozal along with weird colored skin. Once I switched to Lialda, I had zero side effects.

When you say switched, did you stop the colozal cold turkey? My GI specialist told me to stop the Lialda completely and not taper and see how I feel in 1 week
or 2 and would switch me to Asacol if Lialda causes me this much issues.

I am nervous if I stop I will be so sick again, but then again the anxiety issue seems to really bother me if I stay on it. Im glad you are experiencing no side effects!! :)
Posted 1/6/2016 7:37 PM (GMT 0)
I switched right from one to the other. No break in between. I'd be nervous to do what your GI recommended but it seems like your only choice if you want to figure out whether its the medication or the UC causing you problems. 1 week is not that long, you'll probably be fine.
Posted 1/8/2016 8:29 PM (GMT 0)
I spoke to my GI and he said that its ok to taper and see how I feel.

He told me to decrease from 4 tabs to 2 and I feel a lot better with regard to the headaches (pounding near the back) and anxiety - its my 3rd day on 3 tabs, will see if subsides if not will do 2.

Post Edited (eastafrocdn) : 1/8/2016 1:34:11 PM (GMT-7)

Posted 1/20/2016 12:05 AM (GMT 0)
I've been on 2 tabs a day for about 2 years with no side effects, so it may well be dose dependent.

By the way, I'm still in substantial remission, thanks to the green tea, pomegranate and cranberry extracts. I'm going in for my annual scoping in about 3 weeks, so I'll be interested to hear what the doc has to say about whether the actual ulceration has improved or if I'm just getting symptomatic relief. I'm inclined to think it's real because almost all of the urgency is gone.
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