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Posted 8/7/2014 7:04 PM (GMT 0)
Hey All,

I'm new to this forum and just wanted to say "hi".
My name is Cameron, I'm from Sacramento, CA and I'm a UCD Student.
I've been living with UC since 2011 after being hospitalized for severe anemia (apparently bloody BMs for 3 months isn't normal). Got out of the hospital was on 4 Lialda/day and went right into remission. Unfortunately, I haven't been in remission since sept. 2012.

Currently, in a bad flare up, but life goes on. I just thought I'd join because I have been going it somewhat alone and thought it'd be encouraging to speak with others affected by UC. My friends are not very sensitive to it lol.

I'm currently taking 2 Lialda/day, multi-vitamin, and Remi 5 mg/kg every 6 weeks. And I just had one question for the moment: I am currently on a
5 mg/kg dose of Remi, my Dr mentioned a 10 mg/kg, have any of you found going to the higher dosage helped?

Thanks,
Cam

Post Edited (TheGovernor916) : 8/7/2014 1:21:48 PM (GMT-6)

Posted 8/7/2014 7:14 PM (GMT 0)
Welcome, no worries we get it here.

For uc, Remicade is typically given in either 5mg or 10mg per KG dosages depending on severity of disease and patient response. The dosing is also variable and your GI may put you on anywhere from one dose every 8 weeks to one dose every 4 weeks. So the maximums are 10mgs per KG every 4 weeks. Your GI may change the frequency and or dosage depending on how you're doing. Some patients do lose response to remicade over time and to counteract that the remi dosage can be increased from 5mgs to 10mgs and it does work well for some (due to antibody buildup against remicade and/or increase of disease severity) but not all. Immunosurpressive meds (6mp, imuran, and aza) are often used as a precaution to avoid antibody buildup to remi. In the event that a patient looses response to remi, there are other biologics to try: Entyvio, Simponi, and Humira.

BTW your meds aren't showing in your signature, might want to edit your above post.
Posted 8/7/2014 7:22 PM (GMT 0)
Thanks for the response IP. I edited my post.
Posted 8/7/2014 7:41 PM (GMT 0)
You said you took 4 Lialda per day and went into remission, did you quit taking the Lialda or is that when you cut back to two? When you started flaring again did they even try the same 4 Lialda per day that put you into remission before? If you stopped it completely after attaining remission then that was really your problem. You should have taken the Lialda every day for the rest of your life to stay in remission so you wouldn't have to do more dangerous drugs like the Remi.
Posted 8/7/2014 7:50 PM (GMT 0)

garylouisville said...
You said you took 4 Lialda per day and went into remission, did you quit taking the Lialda or is that when you cut back to two? When you started flaring again did they even try the same 4 Lialda per day that put you into remission before? If you stopped it completely after attaining remission then that was really your problem. You should have taken the Lialda every day for the rest of your life to stay in remission so you wouldn't have to do more dangerous drugs like the Remi.

When I was first diagnosed they had me on 4/day, once I was in remission the Doc dropped me to 3/day. Which kept me in remission for about 9 months. Enter Sept. 2012, thought it was just a mild flare up so they didn't start me on anything new or up the dosage. Then it never got better, but I switched healthcare providers at the end of the year still hoping the flare up would end. My new GI (also current GI), dropped me to two Lialda/day and said there wasn't much difference between 3 and 2 because it's not a very powerful drug. Then in August 2013 I did a stint of Pred in an attempt to get me to the point where Lialda could control it. Never got there, now I'm on Remi.
Posted 8/7/2014 7:52 PM (GMT 0)
I have a soft spot for college students as I 'own" two of them,lol.
Yes, the dose adjustment can help symptoms-they might even adjust up slightly to 7-8. Depends on your weight too. They are finding that loss of response can be caused by the Remi getting too low. Your doc might want to test for the levels right before your next dose to see if it is at therapeutic levels in your system. Prometheus labs do the testing in CA. Adding 6mp can make the Remi work better/longer-dual therapy slightly more effective however, you are in a risk group being a young male. Ask your doc.
Sometimes once the mechanism of the biologic fails the whole category of them fails. Hang on to Remi as long as possible.
best,
Posted 8/7/2014 8:04 PM (GMT 0)
Kat, thanks for the response. Definitely looks like I have some stuff to discuss with my Dr.
Curious as to what your daughter tried dietary wise?
My mom is all about the meds and finding the right combo, but my pops is trying to push me to go Gluten free for a month to see what happens.
Posted 8/7/2014 8:23 PM (GMT 0)
You can go GF and still use the meds. GF is [probably] not going to resolve your inflammation, but it might make you feel better.
Posted 8/7/2014 9:31 PM (GMT 0)
I don't post much but I'm a college student in a similar situation so I thought I'd chime in...

about a year ago I was on Remicade like you, which seemed to help a little at first, but about 6 months after starting the infusions my symptoms began to return. At that time my doctor changed the interval from 8 to 6 weeks (didn't work) and also considered raising the dose as yours has. That was until he took a look during a flex-sig only to see a damaged, flaring colon. I also took the Prometheus (sp?) test which showed I had NOT built up antibodies. No more Remicade after that.

So back on the prednisone I went, the only medication that has seemed to work for me. Sure enough, after starting the prednisone, my symptoms subsided and I started tapering. Thankfully I have always been able to taper off the prednisone without any set-backs. However, my symptoms usually returned a couple of months after finishing the taper. So I knew I had to do something different this time.

I had always attempted to refine my diet to be gluten, dairy, and refined sugar free, but doing so as a college student and living in a home filled with these items was not easy. I was very desperate for some relief at this point, so when I started to taper off the prednisone I committed myself to cut out those items from my diet and received a lot of support from my parents doing so, which helped a lot.

Long story short, fast-forwarding to today, about 8 months later, and Ive managed to be flare-free since committing to the diet (+ 2x Lialda/day & 2g turmeric extract/day). Not a spec of blood. Now unfortunately, no matter what I did diet wise, I couldn't get passed feeling about 90%. The diet helped for sure, but I'd say for me personally that it has helped me manage my disease rather than really putting it to rest for a while.

So for that reason, I have started Humira just recently to try and get me "over the hump." If Humira has any effect at all, and I continue my diet, I'm almost certain I will finally have the long term relief that I've been desperately been searching for.


With all that being said, I'm definitely not ignorant to the fact that this disease effects everyone a little differently. But for me and I'm sure many others, a refined diet has helped. So I definitely encourage you to experiment with your diet and determine what you tolerate best and of course what you do not tolerate. Takes time and commitment for sure...

Being a college student with this disease sucks, but we'll get through it. Take care and I hope you find some relief very soon!
Posted 8/7/2014 10:40 PM (GMT 0)
just wondering, but are you a fan of the walking dead?
Posted 8/8/2014 3:50 PM (GMT 0)
SoCal: Thanks for the info. Definitely tough to stay away from all those foods bouncing between class and work and having my parents kitchen be more than 500 miles away. But I think I am gonna give going GF and Refined Sugar free a try.


bananagirl said...
just wondering, but are you a fan of the walking dead?

I've never seen the show. It's on the list though, I'm a huge Breaking Bad and Mad Men fan.
Posted 8/8/2014 4:27 PM (GMT 0)
Yes, my daughter has tried diet mod's. When in remission, she can eat anything without symptoms(except corn and lettuce). When flaring, most all give her trouble-esp. fruits and veggies-even cooked down. Then she stays low fiber and high simple carbs. Lots of rice, peanut butter, avocado, honey,sweet potatoes. Easy on the tract, but not always nutritious. So many times she has gone to straight liquids, baby foods and reintroduces one thing at a time, that I think we'd know if there was a diet culprit. Lactose seems fine, gluten seems fine( she has been tested for Celiac and had several upper endoscopies). I am probably not helping, but I would be so very happy for you if it were a food intolerance. Give it a try. I Read a book called Grain Brain that had me convinced we should avoid all of the grain, not just the Gluten, but perhaps the science isn't there. In the meantime, don't let your symptoms get too bad. It is hard to bounce back from the flares as they get more severe as time goes on.
Posted 8/12/2014 12:30 AM (GMT 0)
"more dangerous drugs like the Remi."

hey John, wanna jump on this ?
Posted 8/12/2014 3:21 AM (GMT 0)

soystud said...
"more dangerous drugs like the Remi."

hey John, wanna jump on this ?

I'm open to all opinions at this point. Feel free to give yours on Remi.
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