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5asa: didn't expect this, I'm intolerant!

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Ulcerative Colitis
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Posted 11/17/2012 3:43 AM (GMT 0)
I feel like a noob. I should have been on 5asa to begin with. However, my doc is potent drug happy.

So what to expect?

I've been constipated since my eye surgery. Hem's and a bit of blood when they rear their ugly little heads, and all that good stuff. So I go on Pentasa tonight. They're down the hatch. And man they are hard to swallow.

If I don't get bad cramping and D, I'm not intolerant? If I'm not, then rec meds here I come1

Post Edited (Sibby) : 11/17/2012 1:16:27 PM (GMT-7)

Posted 11/17/2012 3:53 AM (GMT 0)
Did the doctor at Mt. Sinai tell you to take 5asa or have you not gone there yet? You'll know if you're intolerant, you'll get cramps, diarrhea, blood like starting a really bad flare.
Posted 11/17/2012 3:58 AM (GMT 0)
Yuk. I hope I'm not intolerant then.

No, my 'current' GI said go on Pentasa before my eye surgery. My surgeon almost freaked when hearing it. She and my GP said don't go on it until after the surgery, so this is my first night.

I'm seeing Dr. Van Assche on November 20 :)
Posted 11/17/2012 4:58 PM (GMT 0)
I didn't crap myself! So I guess I'm not intolerant.


about bloody time I had good news.

Nevermind, I spoke to soon. Started having diarrhea, sweats, gas, bloating, and a pain in my mid right back, no where near my spine. But that pain only lasted for 10 minutes. Guess I'm back on finding the right med again.

Post Edited (Sibby) : 11/17/2012 1:15:18 PM (GMT-7)

Posted 11/17/2012 9:00 PM (GMT 0)
No, it doesn't mean you're intolerant....how much are you taking?

Are you on any rectal meds?
q

Posted 11/17/2012 9:42 PM (GMT 0)
It doesn't..? Pharmacist said yes, but I'm iffy.

I took 1000mg last night, rumbling all night. Took the same this morning and started having diarrhea. Haven't taken the next dose yet. I was having normal stools until taking Pentasa.

No, I'm not. I didn't want to chance it when it came to possible intolerance.
Posted 11/17/2012 9:47 PM (GMT 0)
Not that it's any conslation, but I got worse before I got better when I started 5ASA oral.

You got progressively worse on Salofalk enemas in the past?

q
Posted 11/17/2012 9:51 PM (GMT 0)
Never tried enemas prior because the oral meds caused bad cramping, much more blood and worse diarrhea. So I went off of them after a month.

I can understand getting worse then better, but would I consider that when I was fine before the medication?

Post Edited (Sibby) : 11/17/2012 2:55:53 PM (GMT-7)

Posted 11/17/2012 9:58 PM (GMT 0)
well, remember that constipation IS a symptom of rectal inflammation, especially if it's limited. If your UC has gone a tad higher regardling flare, you'll have quicker stools.

rectal meds....you really should be on them.

At least try...

q
Posted 11/17/2012 10:02 PM (GMT 0)
So it's normal to have diarrhea, sweating, short breath, feeling like I have a fever when starting 5asa? Yikes. Normal other than some constipation.

I'll keep with the oral meds until Monday when I can try to get a rx for rec meds. If I get worse, what should I do?

Which 5asa for rec med? Is Asacol foam available in Canada? I heard that's tolerated more than Salofalk enema's.

Post Edited (Sibby) : 11/17/2012 3:14:04 PM (GMT-7)

Posted 11/18/2012 2:12 AM (GMT 0)
No, that is not normal when when starting on a 5ASA. If it gets worse, stop it immediately. It might not be an intolerance but an allergy. You may or you may not have a reaction to rectal meds, but you won't know unless you try. I'm not sure what you have there but the 5ASA rectal meds are Rowasa or Salofalk. Then of course there are the steroid enemas if the rectal 5ASA's are an issue.
Posted 11/18/2012 2:56 AM (GMT 0)
Well jeepers Sibby....did you mention that in your first post? uh no. OK, it's clearer now...

Of course it's NOT normal...if that's what you have now, then stop it asap.

Set up another plan with your doc and don't touch 5ASA meds again.

Keep us posted as to what's happening...
q
Posted 11/18/2012 2:59 AM (GMT 0)
Well Salofalk made me feel 2x worse when I was flaring 2 1/2 years ago. Pentasa makes me feel tired and everything else listed above.

I'll try the rec meds and hope I don't have what you mentioned. Just want to know for sure before going on something else. If all else fails I'll use steroid enemas temporarily then go on LDN like I planned - just having issues with finding the right pharmacist.


Thanks for the advice Sherry and Q. If I still feel crappy I'll stop.
Posted 11/18/2012 3:06 AM (GMT 0)
The only rectal med I'd suggest is a steroid.

I don't think you should continue the pentasa if you have the symptoms you're mentioning.But in saying that...you should get to your doctor asap and get other things checked to make sure your blood levels and blood pressure is doing OK.

Do the other medications have an impact on how you're feeling regarding symptoms...have you left out a dosage of your antidepressants possibly?

q
Posted 11/18/2012 4:37 AM (GMT 0)
Sorry Q, didn't post it in original post, wrote it at 12:58, after dontscopeme.

I don't have it the shortness of breath all the time, but when I took this morning's dose and walked in town, it felt like I walked a mountain. Sweating alot and pain in my back isn't there. Thought it was just side effects from first taking it.

Took my evening pills and it made my gut gurgle a lot, and had pressure around my head (which I THOUGHT was because of my eye surgery, but I'm assuming it isn't)

No, I took all of my meds accordingly. Since my sweating fit I feel like I have hot flashes. Cold, hot. Generally not feeling well. Checked my temp, and it isn't higher than 99. I was perfectly fine yesterday until I took the meds last night.

No dice, now. Stopped it now.

Post Edited (Sibby) : 11/17/2012 9:48:45 PM (GMT-7)

Posted 11/18/2012 6:55 AM (GMT 0)
Yeah, not normal side effects. The looser stool would be a normal side effect, and if flaring with blood, that would be increased because of more bms...


I'm interested as to how you feel tomorrow.

Since you are probably sensitive to salicylates, remember that there are foods that are high in salicylates as well. So, maybe check into the list and see where you fit in. That might help with some of your other body symptoms.

I recently read that for fibro, it's recommended to stop any salicylates even in foods. I found that interesing because salicylates have antiinflammatory action. But maybe some with fibro are sensitive to them.

Hope tomorrow has you feeling better.

You do need a break after all the other crap you've been through. What was the eye surgery you had..I've obviously forgotten.

q 
Posted 11/18/2012 9:50 AM (GMT 0)
Sibby,

Have your doctors or a 24 hour urine and test you for porphyria, you might get some answers.

Good luck!
Posted 11/18/2012 5:38 PM (GMT 0)
Q, I had strabismus surgery to help with double vision. I may have DV for the rest of my life but the images are much closer than they've ever been. The surgery was successful in my case.

I have no issue with taking Aleve but I only take that once in a blue moon and only take one dose. I find if I take something at a high dose, like what happened with me with Imuran, it just makes my body go crazy.

Today my gut still seems a bit queasy, but I'm not having hot flashes right now.

Colicky, I've heard of that, doesn't seem I have it. But a test won't kill me so I'll ask just to make sure. Thanks.
Posted 11/18/2012 5:57 PM (GMT 0)
Good to hear the surgery was a success for you.
Definitely don't overdo the Aleve, but it's good it can help with your aches/pains/etc.

Keep us posted.

q
Posted 11/18/2012 6:03 PM (GMT 0)
Will do!

Aleve is just for my migraines, and thankfully they're controlled now.

Thank you for the help.
Posted 11/18/2012 6:12 PM (GMT 0)
Have your migranes lessend after your surgery?

q
Posted 11/18/2012 7:57 PM (GMT 0)
Yes. Last summer they were horrible. Vomiting, severe nausea, light sensitivity. Everything. Inderal helped with preventing them. Haven't had a headache since surgery. The first time I had it done, I immediately had headaches.

First surgery in 2005 was unsuccessful.
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