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Ulcerative Colitis
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Posted 3/11/2014 5:05 PM (GMT 0)
My daughter is flaring now. This is the 2nd flare she has after her initial diagnosis of Colitis. She has been on Prednisone twice so far. I spoke with my GI over phone and he said he intends to increase Prednisone (her 3rd time prednisone) and change from Pentasa to 6MP. I have an appointment with him in another 30 mins. I have an option of asking to increase prednisone and change to Asacol from Pentasa. He may recultantly agree. There are just two 5ASA with works on ileum and colon. They are Pentasa and Asacol. Lialda and sulfasalazine do not work on ileum.

Advantage of having asacol
====================
1> safest

Disadvantage of Asacol
=================
If it does not work, then I have to introduce Prednisone again (4th time) and goto 6MP.DD has become very weak and wife feels she wants her to be normal soon.Prednisone has side effects and it is better to be off it soon.

My wife says 6MP and I'm with Asacol.

I'm meanwhile waiting for my lab results to come which may take few days (may be a week) too as I have 3 seperate days of stools to submit.

Please advice what should I have to do now. I have another hour or two to decide.

Post Edited (kamakya) : 3/11/2014 11:08:25 AM (GMT-6)

Posted 3/11/2014 5:19 PM (GMT 0)
I've been on Prednisone for a very long time and I was initially very scared to get onto the 6MP. I was adamant that I try all the 5ASAs before I go on the 6MP. My GI had told me that the likelihood of another 5ASA working were quite slim considering 3 of them didn't work for me. I made my decision based on how bad my flare was. There comes a point when you just want to feel better and you no longer want to deal with the flare. I'll tell you my story (it's not a very happy one). I tried the 5ASAs, they didn't work. I went back on the 40mg of Prednisone. I was tapering off very slowly while on the 6MP. We then had to introduce Remicade. I'd like to ask if your daughter is tapering off the Prednisone slow enough? They had me tapering 5 mg every 2 weeks but even that was too fast. I tapered at my own pace (very very slowly) and I was able to get off. Good luck to you. I don't know what options your daughter should go with. I just thought sharing my story might provide some insight. Good luck to her and your family.
Posted 3/11/2014 5:25 PM (GMT 0)
Unfortunately, you can't make an exact science out of any of this. If it were me, I would certainly try the Asacol before 6MP but if there was the time, there would be many posts like Baggravation's.
Posted 3/11/2014 5:31 PM (GMT 0)
It's so hard to give advice like this because everyone responds to the meds differently. Asocol did absolutely nothing for me. I dont know how bad your daughter is flaring but I was in a bad flare and I wish I didn't waste my time with the asocol. That was just my personal experience with it. The 6mp did help me for a while BUT it took quite a long time before it started working.
Posted 3/11/2014 5:36 PM (GMT 0)
Pred was started at 21mg and tapered every 5th day by 3mg.total time was about 4.5 mths 1st time.
2nd time pred was started at 21mg and tapered every 3rd day by 1.5mg.have been on pred for 6 weeka now.

Post Edited (kamakya) : 3/11/2014 12:20:24 PM (GMT-6)

Posted 3/11/2014 6:07 PM (GMT 0)
I would actually recommend going to biologics. I would not spend another day on pred. Talk to her pediatrician too.
Posted 3/11/2014 6:10 PM (GMT 0)
You mean biologic with 5ASA or just biologics.is it safe?I have no idea about that.sitting in doctors office now.

Post Edited (kamakya) : 3/11/2014 12:19:02 PM (GMT-6)

Posted 3/11/2014 6:28 PM (GMT 0)
I mean remicade. No 5ASA anymore. No 6MP.

Pediatric patients struggle with maintaining normal growth unless they are getting proper nutrition and staying off pred.

I am only half serious about biologics. Your daughter's condition isn't a total health crisis, but you seem like a very anxious parent. Biologics are like the proverbial sledge hammer. This kid of med is very effective at inducing remission. It is often used for pediatric cases because of the issues mentioned at the top of my post.

Long term use of biologics has similar risks as 6MP I think. There is a very small risk of cancer. VERY SMALL.
Posted 3/11/2014 6:43 PM (GMT 0)
I don't know how old your daughter is, but I'd advocate for IVIG ....(or anything else to stay off roids). Poor kiddo.
Posted 3/11/2014 6:44 PM (GMT 0)
I'm with kaz - so far what you have been doing doesn't seem to be working - be done with the evil pred !
Posted 3/11/2014 10:42 PM (GMT 0)
I wouldnt go to biologics yet.. but that is just me. Id just sit tight and try and follow the ped's advice until you get more test results back. I really wouldnt do anything drastic till that urine test comes back, it shouldnt be more then a few days. id pick 6mp over biologics any day..

But really, its good to listen to your doctor right now... what did she say?

Post Edited (PathogenKiller) : 3/11/2014 5:05:14 PM (GMT-6)

Posted 3/11/2014 10:52 PM (GMT 0)
ok, I don't have enough information, BUT.....I do know that biologics are usually the LAST thing for people under 18, because they do carry an much higher risk of cancers than for adults..just sayin....the warnings they give all say there is a small risk for cancers in children under the age of 18...always saying under the age of 18, and that to me is significant. I feel safe at my age.

6mp is a very successful chemotherapy drug that does have excellent results for a lot of people, so you'd have to weigh the possible side effects of that vs steroids. As far as the side effects/long term effects on children (again not knowing what age) can only tell you what I always type. I am sorry if this is redundant for others than read my posts, but it does apply here:

All of our doctors now are telling us that use of long term steroids is a no-no. Mine is actually telling me that use of long term steroids (except in obvious dire emergency life threatening situations) is actually being considered malpractice. When I started this disease in 1975 it was one of only two medicines available...

So....when it is actually safer (ethically, medically, and legally) to put you on things like Imuran or 6-MP, what does that tell you about the safety and efficacy of these things?? Yes they come with side effects too, but they are NOT considered bad choices, and actually considered safer now ethically, medically, and legally over steroids...so there is something there....true? That's good enough for me, and I've had close to 40 years experience with this disease...and I can say I've seen it all.
Posted 3/12/2014 1:33 AM (GMT 0)
All,

I met my GI today and he wants to go with 6MP. He wants to increase dose of Prednisone to 21MG and taper 3 MG every 3 days.He has given Flagl tablet 250 mg to be taken 3 times a day, Prevacid tablet once a day as long as she takes Prednisone. He has ordered some blood for 6MP.

I asked him about urinary tract infection and he says sometimes it can happen and did not seem to have any real answer. We are waiting for Urine and stool test results to come back meanwhile.

Another symtom is that she is coughing from yesterday and has mild fevel. She nevr coughed or had any fevel before.

Meanwhile, I also took a food allergy skin test today with an allergy and immunology speacialist and skin test for food allergy all came negative and she is not allergic to any food. He also ordered some blood test for food allergy and we are waiting for its results.

Just going crazy and very confused,concerned and tired. Have been juggling between various labs, doctor appointments and allergy appointment.
Posted 3/12/2014 1:44 AM (GMT 0)
As parents we will always wonder if what we do is right....we can't escape it. Being concerned and taking care of your girl is proof enough you are doing the right thing.

6MP has less risks since they since really say Biologics are a bigger risk for lymphomas in kids and young adults. Plus, 6MP is stronger than the Asacol, and has years of proven track record. Prednisone can also give you a mild fever as well, so don't worry. Blood tests are also standard procedure before starting 6MP.....

Wishing you and your daughter well.....keep us posted.
Posted 3/12/2014 1:53 AM (GMT 0)
If she is having big troubles and taking high dosage of steorids I would probably go for Imuran. It is working like a charm.

Asacol (best 5-ASA imo) can be effective when applied rectally (for lower/left side of colon). Asacol pills are more like "maintenance-material" for me.
Posted 3/12/2014 2:28 AM (GMT 0)
Her cough and fever indicate that she has a viral infection (so very common in kids) and this is what has caused her flare. I would actually wait another week or two before changing anything. And I would stop tapering the pred.
Posted 3/12/2014 3:30 AM (GMT 0)
Kamkaya,
Touches my heart..been there!!
All I can say is be patient and give time.
Try not to let your stress and discussions get into your child.
I hope and pray the stool test will show up something so that she can avoid stronger meds.
Fever could be an indication of some infection.

Just sharing...
When DD was on prednisone we never let her go out in public places not even to church.Mostly bcoz of my fear of her catching infection. I was way off all limits in coping with the diagnosis.I lost more pounds than my sick daughter those days.I never imagined attaining the present state for her. So hang in there...There is a time for everything....Till then do what u can and give the rest to God. She being young will recover quickly with proper nutrition and right meds....

Prayers and best wishes...
Posted 3/12/2014 1:04 PM (GMT 0)
I got my urine analysis report and still waiting for urine culture, blood and stool reports.

Urine analysis has one flag mark and says they found some blood and bacteria in urine. Do I need to see a urologist?
Posted 3/12/2014 2:36 PM (GMT 0)
I knew she still had that UTI. Idiots.

Wait till everything comes back. You need the culture. Don't go to a urologist. You don't need anymore opinions in the mix. I'd be careful about what abx they go with... Very careful.

This is fantastic news!

Kamayaka, can you afford even one meeting with that holistic dr?
Posted 3/12/2014 3:50 PM (GMT 0)
I found a integrative doctor (a family practionser) at John Hopkins (good thing is he covered by insurance) too. I have fixed an appointment in 2 weeks. I'm hoping to see get my urine culture results. I went and checked UTI test that was done last year by her regular pediatrician.They had just done urine analysis and no urine culture and prescribed augmentin. This may be related. Keeping my fingers crossed.
Posted 3/12/2014 4:19 PM (GMT 0)
Crossing my toes for you too. Her WBC values were high, there should be no blood and her urinary ph was really acidic (could be due to meds tho). I wish the test would have caught more bacteria.. Curious to see what the culture yields. 2 weeks is great timing as you should have most, if not all of the tests back by then. Keep breathing in the meantime.. And smiling and hugging and playing. and trying as much as possible not to focus on the sickness.
Posted 3/12/2014 5:19 PM (GMT 0)
It is poor practice for her pediatrician to not culture the urine. It is ALWAYS important to culture urine when there is a UTI. There are some common bacteria that cause UTIs, but if you miss it you can miss it big. Make sure they culture it this time.
Posted 3/12/2014 11:53 PM (GMT 0)
During my initial flare of Ulcerative Colitis Prednisone (60 mg) and Asacol were not effective for bringing me into remission. Finally it was the addition of Cipro which brought my initial flare into remission. Over the years there were two other times that antibiotics brought a flare into remission Cipro again and then Vancomycin. However my doctors still did not think bacteria was the root cause since none of the pathogens they tested for appeared in stool tests.

After 12 years of illnesses, which had proven to be resistant to every other treatment approach except for Prednisone I was scheduled to have surgery. The surgeon told me my blood albumin levels were low - that is amount of protein available in my blood stream to repair damaged tissue. He told me to take meal replacement shakes to boost these levels so that I could make an optimal recovery from surgery. In the following weeks my symptoms went into a relative remission while I was able to taper completely off Prednisone from 30 mg while taking Apriso and mesalamine enemas. I decided that mesalamine (the same active ingredient found in Asacol) could be helpful at maintaining remission when diarrhea was more limited, however in a peak flare it didn't seem to do anything.

Three days before my surgery date I was much healthier and really didn't want to have surgery because it would be a significant blow to my quality of life. I discovered that fecal transplants had been effectively used to treat Ulcerative Colitis. So I cancelled surgery and pursued that instead and with the addition of the anti-depressant drug Bupropion to my treatment regiment, it worked! I learned about Bupropion on Healing Well and then discovered that in lab tests it was a TNF-a inhibitor in mice and that GSK had done clinical trials of Wellbutrin for Crohn's Disease. That was in the summer of 2011, a colonoscopy about 2 months after my big remission revealed significant mucosal healing and I have not been symptom-free since that time with no more colitis meds and without having to do anymore fecal transplants.

So bottom line: there are other things you can do
- whey protein shakes to help the mucousa of the intestine heal.
- Bupropion
- slow down bowel transit time using benefiber to soak up excess water and also drugs that calm muscle spasms, including certain tri-cyclic anti-depressants, Valerian root extract. Slowing bowel transit time could make mesalamine more effective by giving it a chance to work.
- fecal transplants either with or without first treating with antibiotics. This is still considered experimental by doctors with only a few small studies going on right now. However it worked for me and it has worked for others too.
Posted 3/13/2014 12:00 AM (GMT 0)
Fecal....ok, that's a weird thing to call someone, but you bring up a few very good points for me.

1. I have always had a VERY fast transit time. I can sometimes see things I have eaten, undigested in my stool (even when in remission) within 6-12 hours after eating them. My GI has shrugged this off as just my body, and that's that. I wonder how that has affected my Lialda and other 5-ASA and the fact they are not in my bowel long enough to do me any good, which is now why I am on Simponi.

2. Last December, while in the middle of my last and worst flare ever, I had a sinus infection. I was given Cipro, and while on it, my bowel almost completely...cleared. Almost nothing..got almost totally in symptomatic remission......90% clear. When I stopped it, I went back into bad flare. I brought this up to my GI who dismissed this as pure coincidence.

I rely on him and he has always been right in the past. I live the the Chicago area and he has a great reputation.....but now...after reading your post...I am truly truly wondering......
Posted 3/13/2014 12:50 PM (GMT 0)
I'm on 6MP, and really don't see much good/bad from it. I do know it takes a while to kick in as well, so I don't see it as a quick fix drug in any case (I'm not a doctor though).. from my exp. it takes a good few months at least for any effect.
What's the recommended dose they want to give?
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