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Diagnosed with Myocarditis, discontinue asacol

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Posted 2/14/2013 9:23 AM (GMT 0)
After being rushed into the hospital with what was initially said to be a heart attack, I was told to then discontinue my prescription of asacol which I was taking everyday for a little over a month with 60mg of prednisone.. I stayed in the hospital for 4 days as they ran tests to find out what went wrong considering I'm only 22 years old..

During my stay I had another attack and had to have a blood transfusion to bring my count up.. All test came back fine and I was told they can't find any abnormalitys, but yet I would have these episodes of what felt like a heart attack, I was then sent to another hospital to do further testing where a final test showed inflammation of the heart and I was diagnosed with myocarditis.. After doctors did further research they are set to believe the the continuous use of me taking the drug asacol HD (800mg) for about a month had led me to have a severe reaction which there has been reports of before with the drug, and they immediately took me off of it..

Im home now, I'm told to take it easy for the next few weeks and let my heart heal, but I wanted you guys to be aware of this.. Although its a rare side effect, and it's not 100% certain to determine it was the asacol, many opinions in the hospital suggest that it was so be aware of any chest pain that you may suddenly feel and consider immediate treatment to approach the situation before things escalate.
Posted 2/14/2013 8:43 PM (GMT 0)
Initially, you don't know if you had any abnormalities before taking the med, and you're also on prednisone.

There are also viruses and bacteria that can cause heart issues....

But...you are on Asacol, so it's a possible culprit in the mix and a rare side effect for sure. I'm stating that it's an easy target.   And it could be that you're salicylate sensitive....many foods and supplements with salicylates. 

Will you be set up with a cardiologist? Are you also being set up for rehab?

Hope you have good support of family and friends to help you through this process of healing.

Keep us updated.
q
Posted 2/14/2013 8:59 PM (GMT 0)
They say prednisone couldnt of Caused it because they actually USE prednisone to treat this, With it being an Antinflamatory drug.. I am set up for an appt with a cardiologist in two weeks for check up although I did already see and talk to one while at the hospital.. In the meantime I am told to rest, I'm supposed to treat this as if it is a flu of the heart
Posted 2/14/2013 9:18 PM (GMT 0)
So what is your treatment plan for the UC? Sorry this happened to you.
Posted 2/14/2013 9:18 PM (GMT 0)
Good luck!

So have you seen your GI to figure out how you're going to treat the UC now?
Posted 2/14/2013 9:41 PM (GMT 0)
So sorry you're dealing with this. The woman who writes the blog Blood Poop and Tears also had myocarditis from Asacol and ended up needing surgery to address it -- I think she was around your age, too. Her blog is www.bloodpooptears.com
Posted 2/15/2013 12:57 AM (GMT 0)
I'm told to stay on the prednisone for now and that is all, I meet with my GI doctor on match 1st.. What's your guys take on this?
Posted 2/15/2013 5:20 AM (GMT 0)
on what? staying on the pred? You have no choice at this point.

I suggest you do LOTS of research on it, make sure you get copies of all your test results.

When do you get the results of your echo?

q
Posted 2/15/2013 5:20 AM (GMT 0)
Wow You-See, sounds like a terrible time, i'm sorry. :(

I've had minor chest pain sparingly since starting medication a year and a half ago, so I should be careful about this as well on 800mg of asacol.

Thank you for sharing, hope you feel better.
Posted 2/15/2013 5:31 AM (GMT 0)
^^ then you best be checked for it....considering.

q
Posted 2/15/2013 8:22 AM (GMT 0)
I had every test done that could possibly be done for testing the heart and received every result back as well.. everything came back normal EXCEPT the last test of the chest MRI which showed inflammation around the heart muscle and was then diagnosed with myocarditis.. Which is inflammation of the heart which is usually caused by a virus in the system and also a reaction to medication.. This problem is usually alleviated by rest and after a couple weeks the heart will then return to a normal state, in the meantime chest pains are still present but I've managed to go a couple days now with no attacks which is what brought me into the hospital to begin with so hopefully I'm on the road to healing.. At the same time my colitis is becoming more controllable with being down to about 5 BMs a day, 3-4 of the occurring in the morning, still seeing a little blood here and there, stools are still a little lose but as for the UC i seem to be getting better, just hope being off the asacol doesnt set me back
Posted 2/15/2013 12:42 PM (GMT 0)
im sorry you had to go through this additional issue. Maybe it's a good idea to start researching natural antiinflammatories, ofcourse that's only if you want to try managing your condition avoiding the harsh drugs.
Also, once you are well (no blood) it maybe good to supplement with psyllium seed powder (seed powder not husk); it may help. Also probiotics should help and some people swear by them. I usually mix it with the psyllium seed powder and water.

but right now just focus on resting and getting better,

keep us updated.
Posted 2/15/2013 1:17 PM (GMT 0)
Have you let your GI know what happened and that you're off Asacol? If not, you need to call and let him know. I think it's reasonable to expect to see him before March 1, given the circumstances, so you can start a new maintenance med.
Posted 2/15/2013 1:25 PM (GMT 0)
Wow! How scary all this must've been! I hope you find something to control your UC. Get better soon!
Posted 5/23/2013 7:30 PM (GMT 0)
What do they have you on besides pred? Any abx?
Posted 5/23/2013 7:57 PM (GMT 0)
You mentioned you needed a transfusion to bring your count up. What was it?  that may have made things worse. If you had severe anemia then you were not getting good oxygenation to your body, including your heart.
Posted 12/22/2015 11:21 PM (GMT 0)
Same thing happened to me , after using asacol (1 month)alongside other treatments I had come to remission when unexpectedly , c
hest pains (when inhaling and moving) (myocarditis) came about! Asacol seems the culprit
Posted 12/22/2015 11:28 PM (GMT 0)
It's a rare side effect, but does happen. Discontinuing asacol should resolve it. Get another uc maintenance medication without mesalamine. Good luck,
Posted 12/23/2015 10:53 AM (GMT 0)
Currently on infliximab , which my GI is afraid of being the cause of myocarditis hence, treatment will have to be discontinued. But i've only stopped asacolon 24hrs ago , so , do you know how long it will take for myocarditis/chest pains to heal after discontinuation so that I can rule out infliximab and blame the asacol?i'm hearing about a week?
Thanks , happy Christmas
Posted 12/23/2015 12:46 PM (GMT 0)
Google: Mesalamine-Induced Myocarditis, there's lots of references in scientific journals. It's a rare side effect. From the active ingredient in asacol. I've seen a few posters on healing well who've had it. Not sure how quickly it resolves, that's a good question for your doctor.

I haven't heard anyone post on healing well about Myocarditis or seen it listed, even as a rare side effect of remicade/infliximab. I googled: "infliximab Myocarditis", and did get some hits from scientific journals, new to me. I didn't read about it, whether it is plausible or not...
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