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Quincy/Mudlark- spoke to my GI today about this FLARE finally

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Ulcerative Colitis
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Posted 5/25/2010 7:52 PM (GMT 0)
He finally called me back.

Asked me the usuals..how many times a day are you going, are you getting up at  night, are you bleeding etc etc..

He said he really needs me to come in so he can see me..he likes to see what his patients skin looks like he said ..anyway I told him I couldnt at the moment but that I wanted to switch drugs. He proceeded to tell me all the meslamines are the same and Pentasa is more for Crohns blah blah..but he prescribed it anyway cause I persisted. He also gave me refills for the salofalk enemas and supps.

He said I needed to persist through this lil flare and to come see him if things get worse. Then he started to talk about Imuran and all kinds of other trial drugs..no thanks.

So Im gonna call the pharmacy and see if they called in the Pentasa yet. He said I can still take 12 a day but I always get scared with a new drug. I hope I am doing the right thing..like what if this makes things worse and then Salofalk will not work anymore when I go back to it?

I have not been off Salofalk for 5 years.

Posted 5/26/2010 4:29 AM (GMT 0)
Hi...Nice you talked to the doc finally. Was this the GI that you saw last time or your original doc?

Regarding taking 12 daily....I believe the top limit os 4000mg...so that would be 8 if you're prescribed the 500mg capsules.

The Pentasa is still a mesalamine, so I suggested that as an option since it doesn't seem you're sensitive to them, but it offers you another delivery method.

The Asacol is supposed to start releasing at the terminal ileum, the Pentasa covers the entire ileum...not a huge area difference...but it still delivers medication throughout the colon (and it claims the rectum, as they all do. Maybe with no poo involved in the process???, don't get that claim, however).

You shouldn't have any problem going back to the Salofalk oral if you don't like the Pentasa...It doesn't alter your system one way or the other unless you are sensitive or intolerant to the medication or the coating....so, when it goes through..that in iteslf might be an issue.

I don't think you can continue to worry as you have been without exhausting other options since the immuno-suppressing meds arent an option at this point

Let us know how it goes.
q
Posted 5/26/2010 7:54 AM (GMT 0)
My GI has me on 12 Pentasa a day at the moment, 6 am and 6pm, he says its (obviously) not a maintenance dose, but its hard to OD on and better than steroids!

Compared to what I'm reading arounf the place he actually seems very anti-steriod - started talking about azothioprine at my first flare, .

Good luck with it.
Posted 5/26/2010 12:27 PM (GMT 0)
Q- this is my original GI . I have decided to stick with him for now.
He did tell me to take 12 a day as well. He said its pretty much the same as salofalk so I guess that is what I will do. He said that it is slightly different in the way it gets released and the pharmacist did comment that pentasa acts more topical than salofalk. He also said with salofalk it depends on what you have eaten and how acidic it is in the area it releases. I want to do some more research on this today.
I have lots of salofalk left right now. I dont know if I should finish it OR just start with the pentasa asap. Still going 3-4 times a day and somtimes its D..no obvious blood..and still some light cramping but much less than before and only in the lower area right now.
Posted 5/26/2010 5:05 PM (GMT 0)
start them today.....I would. And because they're more "efficient" possibly for you...I'd still start at 8 rather than 12...you can increase it. You're the one concerned about 5ASA....I'm offering a suggstion.

And yes...food intake and gut ph levels influences the coating dissolving.

q
Posted 5/26/2010 6:19 PM (GMT 0)

I picked up the rx...pentasa is more expensive than salofalk OUCH

The pharm said to start tommorow..so I will do that. I will probbaly start at 8 to see if that does the trick,. I did think about a lower dose as well if it actuallly is more efficient.  The pills are huge I hope I dont have an issue swallowing.

Things are improving. I have only gone once today..no real urges at all..some smelly gas but nothing too bad.. I am sure I will go later on some time again..

Posted 5/27/2010 5:28 AM (GMT 0)
They're the 500mg I'm assuming. How large is large?
Hope the capsule is slippery. I know some aren't (such as some of the probiotics).

Keep us posted.
q
Posted 5/27/2010 12:46 PM (GMT 0)
pretty large..like my vitamin C but this one cant be chewed. I decdied to follow the Rx and start on 12 for now. If less gets into the body I figure thats a good thing..just started this morning..dont know how long its gonna take to see the results.. Yesterday I only went once..no blood..but still very mushy.
Posted 5/27/2010 1:59 PM (GMT 0)
Krissy, I hope you star to feel better. Keep us posted,since as you knwo I am in your shoes. Thinking about switching my 5ASA's...
The thing I hate about UC is that you think about your BM's all the time.Like before UC, or even when I was in my long remission I wouldn't really think about it if I had a BM twice one morning...well I had 2 today, normally just 1, and of course I am worrying about it!!! I hate UC!!!!
Posted 5/27/2010 2:14 PM (GMT 0)
kweeks - I hate it toooo trust me girl..its awful!
yesterday I only had one bm and got brave and decided to have a few bites of a burger..this morning I had two bms and cramping...go figure..
Posted 5/27/2010 3:27 PM (GMT 0)
I am actually also considering changing my 5-ASA drug from Lialda to Apriso. My doctor is suppose to call me back about it today. I'll be interested to see if the change makes a difference for you. I started a very mild flare last week and have not been able to get it under control. I have flared on and off since my daughter was born in 2006. I always flare worse May - September.
In almost 4 years I have never achieved remission that lasted more than 6-8 weeks at a time. I have been on almost everything both rectal and oral without sustained sucess...so I am going to start Imuran after I deliver my son in August. I saw that your doctor suggested it to you and wondered why you are against trying it. Hope that you get this flare stopped soon!
Posted 5/27/2010 4:07 PM (GMT 0)
that field- the answer is simple- I AM SCARED. Humira made me feel awful..and if Imuran is simple I Dont want that either..I dont want anything that alters my immune system if I can avoid it. I will load myself up with 5 asas from top to bottom to reach and maintain remission. I would rather take a short steroid course that play with the big guns again..
Posted 5/31/2010 2:41 PM (GMT 0)
When do you think I will know if the Pentasa is doing something for me? So far no bad effects..its hasnt even been a week yet though..Do you think it needs a few weeks?
Posted 5/31/2010 4:57 PM (GMT 0)
ah, you're getting them down then..how?

I guess t's wait and see...as long as you aren't getting any worse, that's a good thing.

q
Posted 5/31/2010 6:13 PM (GMT 0)
just takin my time and making sure the pill is not in my mouth long before i put some water in there..then chasing with more and more water after..
not getting worse but not too much better yet either..
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