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My GI has never heard of this. Am I weird?

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Posted 6/29/2012 4:32 AM (GMT 0)
Last year when increasing Apriso to maximum I got a low fever, headache, chest and upper back tightness/pain and severe shortness of breath. My GI said Apriso was not the cause of these symptoms but as soon as I discontinued those pills I started to get better-not the UC but the breathing etc-.

Fast forward and I was doing well on 2 Lialda, for awhile. Due to a flare we doubled the dose and after a week or so...same story as Apriso. It did not get as bad this time as I immediately cut back on the dose. (I would like to be able to breathe, even if it means bleeding.)

The GI says he has never heard of these side effects.

Does my story ring a bell with anyone? What do people mean when they report an intolerance to 5ASA's? I kind of wonder if the side effects could be coming from another place (pancreas? esophagus?) though it feels respiratory. I wonder if I would have luck with a third 5ASA.

Thanks for sharing! The GI wants to go to pred next and bypass rectal meds. He says the problem is too high up (sigmoid). I may save that thought for another post.

 

Posted 6/29/2012 5:11 AM (GMT 0)
A lot of people have allergies or intolerances to meslamine unfortunately. I've seen it mentioned quite often here.
Posted 6/29/2012 8:07 AM (GMT 0)
Naturalcurl,
HI, ive tried enough to know im sensitive to them.
My symptoms werent like yours though.
I had gas bloating and pain mainly. I went of Mezavent last week for another reason and my uc has improved significantly.

Ju
Posted 6/29/2012 11:44 AM (GMT 0)
I didn't have the same symptoms as you either. But you need to listen to your body and if he doesn't believe it, that's his problem not yours. My doc had a hard time believing that I couldn't do Rowasa, Canasa or Asacol. When I do the rectal mesalamines, I get a flu like feeling (achy joints, headache, general feeling of unwellness) and severe abdominal pain with an increase of D. Asacol just doesn't work for me and it causes major D in me. Finally after rapping it against my docs head that I CAN NOT DO ROWASA, he finally listened.
Posted 6/30/2012 3:39 AM (GMT 0)
Thanks for the replies! Meanwhile I am back to the lower dose of Lialda with resolution of most of the side effects; but without as good control of the UC.

If the next step is pred then I am highly motivated to figure out what's going on and work with mesalamines in one form or another.
Posted 6/30/2012 11:42 AM (GMT 0)
naturalcurl,

Welcome to the forum.

Sounds like an intolerance to me, and it's a good thing you've brought it to your doctor's attention.

Ultimately, you have to be your own best doctor.

Did you ever ask your doctor if probiotics or diet modification can help UC?

I bet if you did, he probably said no.

From my personal experience, I can tell you that there are other very effective ways to control symptoms and minimize them, even go into remission through other means: diet modification, supplements, probiotics, making sure your have adequate vit. d3 (need blood test for it), and LDN (low dose naltrexone).

Please don't think that prednisone or the biologics is the ONLY way. There are other options to you.

If you are interested in getting more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

 

Please let me know how we can help you.

 

 

Posted 6/30/2012 10:06 PM (GMT 0)
I had intolerances to both Pentasa and Asacol which my doc absolutely didn't believe.  I know my body though and know exactly how I felt when taking them.  After researching a bit I have found it isn't really that uncommon.  He has now switched me to Apriso (another mesalamine) which I am going to try just to try but I know what is going to happen.  In a way I am going to take it just to prove a point to him.  These docs need to listen to us when we tell them what is going on.  I believe no one knows this disease and what works to relieve the symptoms like we do. 

 

Posted 7/1/2012 5:07 AM (GMT 0)
Your doctor sounds dumb-- telling you that rectal meds won't help the sigmoid colon "because it's too far up". Good gravy! (I'm being polite.) The liquid retention enemas properly used generally speed healing of the rectum & sigmoid. RE reactions to oral 5-ASAs: one can get them from mesalamine, or from the different "fillers" that are combined with it to make the pill or capsule. I can tolerate mesalamine, but some "fillers" definitely give me allergic reactions, and there is something in Apriso that bothered me by the 2nd day I tried it. I got extremely dry mouth and a very noticeable slowdown of peristalsis in my colon. My gastro, who subspecializes in IBD treatment, immediately told me to discontinue Apriso. I was initially put on brandname Colazal during Phase 2 NIH clinical trials in 2003, and developed puffy, itching eyelids from it after 10 weeks of 3 x 3 caps daily dosing-- also random dizziness, which some other forum members reported here. Salix then altered the product-- TG, which made it tolerable & very helpful to me in achieving remission! We UCers tend to be chemically sensitive so I wouldn't consider your side effects to be that unusual after trying a new med. It's good that you're alert to them; now you have to decide what to do about this unhelpful doctor. Best wishes! / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 7/1/2012 5:27 AM (GMT 0)
I had the same reaction to Cortenema...chest tightness and couldnt breath. Pharmacist says that was not the cause and as soon I stopped meds problem stopped. I always write it down as an allergy on medical forms.
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