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Posted 11/19/2017 8:15 PM (GMT -5)
Hi, Sorry if this is long. Looking for advice from people who have gone through this.

After 2 GI doctors and over a year being told I had Celiac and I was sick because I wasn't eating right, even though I was extremely OCD about what I was eating, I was finally diagnosed with UC Oct 3rd 2017. My doc put me on 4 Mesalamine daily, with no improvement, he then added 40mg Prednisone 3 weeks later (I had been on Sulfasalazine for 4 weeks prior to colonoscopy on Oct 3rd, after a CT Scan). I was having 5 - 7 clumpy non formed BMs a day (most were urgent, and little to no warning) at this time. After reading many people talking of reactions to Mesalamine I cut dosage to 2 a day to see what would happen, and it got better as in 2-3 clumpy non formed BMs a day and urgency went away. I tried a few days of not taking Mesalamine at all, and symptoms returned to 10+ urgent BMs a day. So I am currently back at 2 a day.

I had a follow up appointment on Friday and being my symptoms had improved, even though not 100%, I thought I was going in the right direction. I was told my lab work showed inflammatory markers had actually increased from 80 in Oct, to now over 100. And now have a follow up appointment next month where if symptoms and inflammatory markers do not improve, he wants to move to Biologics. I read some on Biologics, and I am not sure the benefits out weight the risks ( I have always been the odd one that gets the rare side effects to medication). Honesty I could live with my non formed BMs I have now, and just take this as the norm. But with inflammatory markers so high, I am thinking that is probably not an option?

Any advice would be welcome.

Thank You
Shannon
Posted 11/19/2017 8:25 PM (GMT -5)
Hi Shannon,
Welcome to the forum!! Great people here! Anyway before you go onto biologics I would try rectal meds (such as mesalamine enema 4g (Rowasa).. That would be my first choice but at least Canasa or even Cortifoam etc... UC starts at the bottom so rectal meds reach that area directly.(So even if you have Pancolitis, they still have excellent value) I would do this before taking any oral steroids again and see how it goes. For the record--Lialda oral 2/day works well for me...but I have a slight intolerance if I take any more (3 or 4 per day) So be aware that it is a possibility.

Also I would through in fiber (such as Metaucil) and probiotics (start them both slowly). I hope you feel better!!
B
Posted 11/19/2017 10:33 PM (GMT -5)
what B said -

have you been tested for any bacterial pathogens ?
Posted 11/20/2017 10:38 AM (GMT -5)

Dodgegrl_02 said...
My doc put me on 4 Mesalamine daily, with no improvement, he then added 40mg Prednisone 3 weeks later (I had been on Sulfasalazine for 4 weeks prior to colonoscopy on Oct 3rd, after a CT Scan). I was having 5 - 7 clumpy non formed BMs a day (most were urgent, and little to no warning) at this time. After reading many people talking of reactions to Mesalamine I cut dosage to 2 a day to see what would happen, and it got better as in 2-3 clumpy non formed BMs a day and urgency went away. I tried a few days of not taking Mesalamine at all, and symptoms returned to 10+ urgent BMs a day. So I am currently back at 2 a day.

Sounds like you might have a mesalamine allergy/intolerance. Although some here can tolerate mesalamine at a lower dosage, as you are describing 2 pills a day.

Dodgegrl_02 said...
if symptoms and inflammatory markers do not improve, he wants to move to Biologics. I read some on Biologics, and I am not sure the benefits out weight the risks ( I have always been the odd one that gets the rare side effects to medication).


I've been on biologics, remicade specifically, for 4 years now and I have yet to experience a side effect from it. I did find a remission though. We're all initially nervous about the prospect of side effects from a new class of UC medications. For me that was all worrying for nothing.

The odds of biologics helping improve your UC symptoms are about 65%. Few experience side effects from biologics. The benefits far outweigh the risks. The Crohn's and Colitis Foundation of America has a great risks versus benefits read and video that delves deeper into it, and looks at the odds of specific side effects occurring:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Posted 11/20/2017 12:37 PM (GMT -5)
Were you on rectal meds? Doesn't sound like mesalamine intolerance. Sounds like undertreatment and not full coverage.

q
Posted 11/20/2017 12:43 PM (GMT -5)
Hi, I think you need to explain to your GI that you reduced your meds from 4 to 2 tablets a day which is probably why you have signs of inflammation, due to being under medicated. I would ask your GI about Immunomodulators, like azathioprine, which is the next step up from Mesalamine and worth trying I think before moving on to a Biologic.
Posted 11/20/2017 10:23 PM (GMT -5)
Thank you for all the responses. I was teated for pathogens last year all negitive, nothing since though. I started taking fiber and probiotics the other day.

I did tell my doctor i reduced my medication and the effects, and his response was he wanted me to try uping it again over the next 2 weeks and call him to let him know the effects. He kinda seemed to blow off the thought of an intolerance to mesalamine.

I have not tried retal meds. and my GI didnt mention them, but i will when i call him back.
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