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UCers-Not getting over my flare & I don't like any of my options- Need your advice

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Ulcerative Colitis
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Posted 6/7/2016 12:23 AM (GMT 0)
I have had UC for 8 years (diagnosed at 17 yrs old). I have taken Asacol & did well until about 3 yrs ago when I had a flare. My Dr switched me to Apriso about 1 yr ago saying Asacol was going off the market.So now since diagnosis I have taken Prednisone 3 times and did well for about 1 yr afterwards. I started with my most recent flare 5/6/16 and had sigmoidoscopy & was put on Uceris & back on the maximum dose of Asacol (my request). I am also taking 2 VSL#3 DS per day (my insurance does not cover & have been buying on Ebay). I am better, but not 100%. My bm's are like thick mud & not as frequent. My Dr wants me to go on Remicade, Humara, Imuran or Entyvio. I'm freaked out looking these meds are side effects up ! I always seem to get a lot of side effects to meds in general.He wants to put me on a Prednisone bridge to another medication. I'm scared! I don't want any of these meds ! I know what my reality is- I need to decide which one. Please give me your best advice. Thanks.
Posted 6/7/2016 12:57 AM (GMT 0)
When apriso stopped working for me my dr recommended remicade. I was afraid of remicade as well, but I've had very few side effects. Prednisone is so much worse on me than remicade. I take Zyrtec and Tylenol the day of my infusion, sleep a lot that day and back to normal by the next day. I've had some muscle aches the day after but nothing that inhibits my day to day.
Posted 6/7/2016 2:06 AM (GMT 0)
were you ever a smoker or exposed to 2nd hand smoke?
Posted 6/7/2016 2:15 AM (GMT 0)
No, never exposed. My father is a Type 1 Diabetic though.
Posted 6/7/2016 2:30 AM (GMT 0)
some folks have found success making some dietary/lifestyle changes - have you tried anything of that sort ?
Posted 6/7/2016 4:21 AM (GMT 0)
I was also scared to start a biologic. My doctor said it was time but left it up to me so I waited several months. I was starting to flare more often and prednisone was taking longer to break my flares so I decided to give remicade a try. It changed my life for the better and I wish I had started it sooner. I responded immediately to it and the only side effect I had was a headache during the loading dose phase. I've been on it now for almost 7 years. Good luck with your decision!
Posted 6/7/2016 8:25 AM (GMT 0)
I've been on Remicade since 1997. Never had any side effects. I tend to feel a bit tired and sleepy after the infusions, but that may just be due to the time it takes for the infusions. Prednisone, on the other hand...Aaaakkk Kefir seems to help a LOT if I think...tastes like buttermilk, which I dislike. LOL But, for me, it works. I also take Delzicol...was taking Asacol for years. I think Delzicol is about the same thing as Asacol...masalamine(sp) and it works for me also. Remicade put me in remission for over 5 good years until my insurance refused to pay. After resolving that problem, I'm back on Remicade and back in remission. Good luck with your journey.
Posted 6/7/2016 10:26 AM (GMT 0)
As far as safety goes, I believe Remicade is a lot safer than taking prednisone all the time. My mom has been on Remicade for the past 10 years to treat her RA and she has no side effects and has done very well on it. I gave Remicade to try but it just didn't work for me. If it did I'd probably still be on it. I never had any side effects while I was on it. Just some fatigue right after the infusion. Good luck to you.
Posted 6/7/2016 10:35 AM (GMT 0)
Is your only symptom poorly formed stools? How frequently? what about pain or flu like symptoms? And when was your last scope?

Some of us have had success with diet modification, so you might want to try it before biologics. I would also recommend adding turmeric (curcumin) to what you take. It's been shown to be helpful for UC.
Posted 6/7/2016 3:19 PM (GMT 0)
And if you try all of that and get tired of the UC---go to Remicade. It does have some side effects but has alot of data and been in use a very long time. Stay away from the PRED unless it is an emergency. 6mp is less expensive and is commonly used before the biologics. Some doc's are going right to Entyvio- it is easy to administer and takes little time for an infusion. It works differently though and can be slow to act in a flare. See what your doc thinks, and keep reading here.
Posted 6/7/2016 5:13 PM (GMT 0)
I've been on these medications for several years and never experienced any side effects. I'm not sick any more than normal. I've found remission, the only time it's ever occurred since I got uc. Quality of life is the biggest concern when managing chronic illness, you shouldn't let fear hold you back, and make your suffering from uc symptoms longer than is necessary.

Yes, they do have serious side effects and we're all a little concerned when first considering these medications. What helped me greatly was weighing the actual risk versus benefits which is a key point to consider when starting a new class of medications. There are roughly mid-60-ish percent odds that immunomodulators or the same that biologics will improve your uc symptoms. Side effects are statistically small, few experience them and they're serious when they do occur.

The most concerning side effect of these medications is lymphoma which has odds of 6 in 10,000 (or 0.06 percent) compared to 2 in 10,000 ( or 0.02 percent) for the general population. Of those who get it, 66 percent successfully put theirs in remission. To put those odds into perspective, the odds of death due to heart troubles is 1 in 5, and from a car crash in the usa are 1 in 133.

The second concerning area is increased risk of infections. We're talking about the type of infections that typically require antibiotics to treat (uti, bronchitis, sinus, etc.). You should seek treatment earlier if you suspect you're coming down with one, rather than wait it out, because the symptoms will start sooner and become more severe with a slightly reduced immune system. Normal cuts bruises and scrapes are fine, no worries.

The Crohn's and Colitis Foundation of America is the source for these statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Usually immunomodulators (Imuran, 6mp, or aza) are tried before biologics (humira, remicade, simponi, entyvio. However, some gastroenterologists jump straight to biologics as they're much quicker working.
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