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is anybody taking APRISO

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Ulcerative Colitis
how to avoid flare ups with UC
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Posted 7/7/2015 12:44 AM (GMT 0)
YES, I have been on APRISO for about 3 weeks. I am also on prednison..starting with 30 mg and weaning down to 5-10mg. This is all brand new to me....having been recently diagnosed with UC and was in the hospital to get it under control. Been out of the hospital one week.
I am quite frightened as to what lies ahead and how to avoid flare ups. How much of my life style will change as my husband And I travel a lot and we enjoy good foods and wines.
I hope some folks will respond as to how to avoid flare ups and what I can expect from now now.
Thaks
Nanaone
Posted 7/7/2015 1:50 PM (GMT 0)
I have been on Apriso for about 2 years. But I was put on it to remain in remission that my Remicade has produced. But UC is a highly unpredictable condition and there really isn't any way to avoid a flare. The best you can do is eat what you can tolerate, avoid alcohol and caffeine if it bothers you and avoid NSAIDs (Advil, Aleve etc) like the plague as it can induce intestinal bleeding.
Posted 7/7/2015 3:34 PM (GMT 0)
Has Apriso kept you in remission....have you had many flare ups?
I've not been on Remicade....just Apriso and predisone.
Have you had to avoid alcohol altogether?
We like to travel and now I am so fearful of doing so.
Do you get flare ups often?
Posted 7/7/2015 4:17 PM (GMT 0)
Apriso and Remicade is what finally put me in a solid clinical remission. I've been in remission now for almost 2 years. Before that I had a hard time controlling my Uc and ran the whole gamut of meds. But, no flaring now. I go to the bathroom about 3 times a day, no pain, no blood. Semi solid stool.

But no, I don't avoid alcohol but I am careful of what I drink because I also have IBS and diverticular disease. Wines, rum, malt beverages, tequila and whisky makes me want to die the next morning! Lol So when I do drink I tend to stick to vodka cocktails. Alcohol bothers some UC'ers but not all. Everything is so individualistic when it comes to UC.

I used to be afraid of travel too but I always went prepared. Extra clothing, extra meds etc. also, some people use Immodium to help stop D for a short time. Tho it's not recommended to take long term or in high doses as it can potentially cause a dangerous condition called Toxic mega colon. Also, if you can tolerate fiber, fiber can help bulk up stool so you don't have D as often. Also a probiotic may help.
Posted 7/7/2015 5:01 PM (GMT 0)
THANKS.
I am having a follow up visit with my dr. today and I will CERTAINLY mention Remicade. Are you taking BOTH...Apriso and Remicade both everyday? I will take the Apriso everyday for the rest of my life. I will ask about Remicade.
I was so happy to hear that you've been in remission for 2 years!! and no flare up.....
I feel optomistic. GOODNESS....
I will not have any alcohol until I finish with the prednisone....which will be the end of the month. Then, I'll wait about a week and start slowly with some wine.
What extra meds do you take when you travel?
What foods do you avoid Chinese? Mexican?
Since I have just recently been diagnosised and have only been out of the hospital a week....I am so unsure of what lies ahead of me and how to avoid flare up.
I am certainly going to ask about the Remicade today!!
Posted 7/7/2015 5:13 PM (GMT 0)
More than likely your doctor will think it is way to early to consider Remicade. It is an infusion which lasts about 2-3 hours at regular intervals from monthly to every two months. Right now your game plan seems to be for prednisone to kick start a remission and to take the Apriso forever in order to remain in remission once the prednisone is tapered off. If it works it would be a mistake to ever stop the Apriso, ever. This might work and it might not but right now it is your safest option. Prednisone only works while you take it and quits when you taper off which is where the Apriso comes in as it can eventually and hopefully keep you in remission all by itself. Alcohol can bother many UC'rs but as far as diet and drinks (including alcohol) go, everyone is different and you have to learn your own body and what works for you and what makes you worse. Sometimes that can be a long process. UC made me histamine intolerant so alcohols and some of the things you describe as "good foods" usually have higher amounts of histamine and would make me worse, except for the fact that I take the digestive enzyme DAO before ingesting high histamine and this allows me to eat these things with no problems. High histamine drinks are much harder though because they are so concentrated it's hard to take enough DAO to counter them. I've pretty much given up orange juice due to this. Most all alcohols are high in histamine.
Posted 7/7/2015 5:35 PM (GMT 0)
Thanks for the info about Remicade.
I'm nervous as to what will occur when I'm off the prednisone....and YES....I WILL be taking the Apriso
forever...no problem.
Have you been in remission....any flare ups...what may cause them????
What do you mean....histamine intolerant and...what is the digestive enzyme DAO? What foods would you be taking them for?
How are you now....any flare ups?
What meds are you taking...are you taking Apriso?
Posted 7/7/2015 5:36 PM (GMT 0)
One step at a time, Remicade is for those of us with severe and extensive disease, it's only tried after other things do not work. You might be totally fine on apriso, give it some time. Usually, a meslamine-based enema (rowasa) or suppository (canasa) are added to treat from both ends, which is the best option. If your going to ask your gastroenterologist then ask about it.

Uc is characterized with periods of remission (that is no symptoms) and periods of flares (where symptoms return). Flares are unavoidable. The best you can do is lengthen the periods of remission and shorten the periods of flares. How? Always take your prescription medications, religiously whether you feel good or bad. Be vigilant and notice the signs of a flare starting (more bms than usual, bms getting softer/looser, signs of blood, mucus and increased urgency) and tell your gastroenterologist asap, nip-it-in-the-bud, before it becomes a really, really bad flare.

Also, what works for one uc patient doesn't necessarily work for another. Uc is very individual and most treatment is trial-and-error until the right mix of medications and doses is found for you. It's easy to get excited because some treatment worked for somebody, but there's absolutely no guarantee it'll do the same for you (lol it's not that easy).

Remission can last years and years for some (sometimes 6-8 years or more), sometimes a year or less, others struggle to achieve remission at all. Took me 2.5 years to achieve (some take less time, others longer).
Posted 7/7/2015 5:50 PM (GMT 0)
As much as I like to help people on this forum I am reluctant to answer your questions. There are thousands of members on this site and there are also thousands of different stories here to. How many respond to your particular thread should not be given any more weight than all of thousands of other stories here that might not respond to your thread. I don't want you to get a prejudiced view from just the few members responding to your thread as it might wind up putting you down a totally wrong path. Every case is different, including mine.

Many people define remission in different ways. I don't define myself as ever being in complete remission but others here would call me in remission. I live an almost totally normal life. The treatment plan I use is in my signature. UC has made some people intolerant to high histamine foods but I seem to be in the minority on that. I only mentioned it because you mentioned traveling and eating "good foods" and wines. You can do internet research on high histamine foods and DAO and see if it applies to you. It may or it may not.
Posted 7/8/2015 4:13 PM (GMT 0)
went for my follow up visit yesterday...I'm out of the hospital about 10 days.
Easing off the pred..now on 20 and easing down 5mg per week until I'm off. Of course, will always be on Apriso. Starting to eat more foods slowly...will not do alcohol until off the pred for a while.
What is DAO? I wonder if the pred is keeping me under control...and wonder what's ahead when I'm off it. Lost a bit of weight since I have been a low fiber, restrictive diet and having eaten smaller portions.
Now, I'm eating a bit more and will have 'fun' needing to gain some weight!!! (This is something new for me, too). I will start slowly...again, wonder what's ahead when off the pred!!
I recognize this is something I will have the rest of my life and will not know what will trigger it off.
I will take the pred with me when I travel...we travel out of the country for a month at a time. I will talk to the dr. before we leave so I know what to do if/when it flares up.
This is all so new to me and I'm trying to understand what lies ahead.
Posted 7/8/2015 4:31 PM (GMT 0)
DAO is a type of digestive enzyme that helps metabolize dietary histamines. Many UC'rs are low on this enyzme that is made by the body. This can give you a histamine overdose if you ingest too much histamine and cause worsening UC symptoms. You can either avoid eating high histamine foods and drinks (such as alcohol) or you can buy some DAO (I get mine from Swanson) and take it before ingesting these foods and drinks. If your body is not low on natural DAO then this would probably be of no help to you but, in my case, even though some would call me in complete remission, my body is always low on DAO and I don't expect that to ever change no matter how good I'm feeling because every time I ingest too much histamine and don't take enough DAO to counter it I wind up running to the bathroom and having diarrhea shortly afterward.

No one knows the future about what will happen when you are off prednisone but a couple of things you have to remember are that treatments that worked on your before can often not work for you in the future so it's far from a guarantee that if you have problems all you have to do is start prednisone again and you will be fine. Another thing is that if you make yourself aware of your dietary environment you will eventually be able to learn your trigger foods and avoid them. Unfortunately, even that doesn't mean you will never flare again. Almost all of us show improvement taking some kind of probiotic, with the most successful one being VSL#3. Stress also seems to play an important role. I would highly suggest that any time you experience increased stress to also increase whatever treatment works on you. With this disease you have to cut it off at the pass and treat proactively instead of waiting to get worse and then treat.
Posted 7/8/2015 4:53 PM (GMT 0)
Living with a chronic illness brings about a lot of uncertainty. All of us face it. Some have an easy course of uc, it's easy and interferes minimally with his/her life. Others have an truly evil course of uc, that's aggressive, spreads, and hard to treat. It's to early to know which hand you've been dealt. I hope you have a good hand of cards :-)
Posted 7/8/2015 8:30 PM (GMT 0)
I am taking a probiotic as well as multivitamins.
I have no idea as to histamine intolerance, DAO digestive enzyme, etc. Is this something I should ask the dr. about? How does one buy DAO...is it a tablet (name of tablet?)
I looked up foods that are high...most everything I like!!!!
I feel that the pred is keeping me in control now. As I said, I'm so fearful as to what will happen when I'm off it. I'm eating a little better now....although have not gone for Chinese and/or Mexican....and no alcohol. I know not to have salads now...something else I miss.
I have always been a good eater and enjoy "cocktail time" each evening. But, I guess that will change now.
This is all so new to me. I am glad to have this to talk to folks who have uc. It gives me a bit of understanding.
Posted 7/8/2015 9:12 PM (GMT 0)
Asking the doctor about DAO is useless, even though there is a lot of medical evidence to it. Most know absolutely nothing about it. DAO is a capsule. It doesn't need a prescription. I don't think you can buy it in any stores. I order mine online from Swanson. There is another product called Histame that you can order online from several different places but it costs more and contains an added ingredient, Vit C, I believe. You can either do that or try avoiding high histamine foods and see if you get better and also see if you get worse when you do eat them. That's how I figured it out.
Posted 7/8/2015 11:22 PM (GMT 0)
thanks....good advice.
will do. avoiding many high histamine will be HARD....especially wines!!!
right now, I have started to eat more foods and bigger portions. The weight gain will return!
But, as I said, I wonder if the pred is keeping it all under control and I'm so fearful of when I'm off it.
Still have a few weeks ahead of me.
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