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Ulcerative Colitis
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Posted 9/22/2016 3:13 PM (GMT 0)
I need advice from others with UC.

I'm diagnosed in 2000.

I take 3g Pentasa daily spaced out into 3 doses.
1 take 1g Canasa at night.

Pretty much the max recommended mesalamine dosage.

I also take 50mg 6-MP once daily

I've taken Pentasa for over ten years but it seems it it no longer working. I was previously on Asacol (not HD) and a short run on Colazal. I've had the runs for about three weeks. No blood. I'm going to ask the doctor for some Predisone to calm me down there. However any suggestions on what I should talk with my doctor about?

I'm starting to get the UC anxiety where I'm afraid to be trapped anywhere with a bathroom...
Posted 9/22/2016 4:03 PM (GMT 0)
Sometimes there are flares even when mesalamine is overall working. It often does not give 100% control So, I hope the drug is still working for you and this flare is short.

It is distressing to have any flare though when on 1st and 2nd line medications.

I think probiotics can be an important part of a maintenance plan. Something to think about after the pred tames your flare.

good luck
Posted 9/22/2016 4:29 PM (GMT 0)
You should first have stool sampling done to make sure nothing else is going on.
Rather than pred, ask for mesalamine enemas (4g) and a steroid foam enema to use in the morning after the majority of your bms.

Are you on probiotics?

q
Posted 9/22/2016 5:06 PM (GMT 0)
I've never been told to take any probiotics or a foam enema. I'll have to discuss.

However I've been leery of Rowasa because I didn't think I could retain it all night. I'm not sure what my specific diagnosis is (ie: left sided, proctitis) perhaps it would help instead of the Canasa which doesn't reach very high.
Posted 9/22/2016 6:01 PM (GMT 0)
Even if you can retain them for a half hour, it will improve.

The foam steroid is what I suggest in conjunction with mesalamine if that's not enough.

Doesnt matter how high the extent of location. You're on oral meds....both end approach. Plus, higher dosage rectal since that's where it starts.....save the supps for supportive, while tapering or for maintenance. Not enough for treatment in my opinion.

I ditto the suggestion of probiotics and I'll add fibre supplements suggestion too.
q
Posted 9/22/2016 6:24 PM (GMT 0)
Doc mentioned Humira last time. I told him I couldn't afford it.

I know Rowasa has a generic. Is the foam generic in the US?
Posted 9/22/2016 6:40 PM (GMT 0)
1) Get a stool test to make sure your change in symptoms isn't due to a pathogenic cause like cdiff

2) Rowasa is better than canasa suppository, ask for a prescription. More active ingredient, and it goes much further.

3) Pentasa can be at least 4 grams a day, ask for a dose increase

4) 50 mgs of 6MP is a very small dose, if your bloodwork is fine then it might make sense to increase that dose as well. Ask your gastroenterologist as there's bloodwork dependencies and proper monitoring during that increase required for your safety. 75-100mgs is more typical, but weight and bloodwork are often limiting factors.
Posted 9/22/2016 6:44 PM (GMT 0)
Going for appts today and tomorrow.

Thanks for pointing me in the right direction.
Posted 9/23/2016 12:02 AM (GMT 0)
nynj2008: Humira costs me $5/month with their copay card. https://www.humira.com/humira-complete/cost-and-copay

If you have standard, non-government (Medicare, Medicaid, military) insurance they might be able to help you out.
Posted 9/24/2016 2:42 PM (GMT 0)
Geeker, doc brought up Lidia instead of Pentasa.

Put me on Uciers and Rowasa instead of Canasa, said things are left sided from last scope.

He wants to do a new scope and then will talk about possible change to Humira is needed. Thanks for the info.
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