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Posted 11/28/2015 6:03 PM (GMT 0)
Hello everyone, I'm a 5 foot 5 (1/2) male and currently weigh 112 pounds. I've been flaring for around 3 months. Lost a lot of weight while trying the hydrocortisone enemas and because of restricted diet too. Weight loss seems to have stabilized now but not sure. I weighed around 130 before flare.

I've never weighed this little before so it freaks me out a little. I've currently started on 20 mg of prednisone but not sure if that is enough to address the flare. My GI doctor did a scope and said I was in a moderate severe flare whatever that means. He wanted to start me on imuran or possibly imuran and remicade both but I wanted to try the prednisone first. It also scares me to be on two powerful medications like that.

Also, wasn't sure if starting imuran or remicade would be safe when I don't have this flare under control and weigh so little. Does that matter when starting those meds? Is 112 a dangerous weight to be at or is this type of weight loss common with UC and expected when starting biologics? I've had pancreatitis twice in the past, I'm not a drinker so the cause is unknown but I don't want imuran or remicade to trigger that.

I've been on prednisone for 3 days and seem to have increased mucus in stool. Is that a good sign, bad or neutral?

I'm so worried about becoming a burden to my family. I'm 36 and don't want to become dependent on other people if I get really sick. Sometimes it seems hopeless but I know this could just be my anxiety talking. Hope everyone had a good Thanksgiving!
Posted 11/28/2015 6:29 PM (GMT 0)
The weight loss is tough, I found that eating more frequently and eating high calorie/fat foods like avocado, coconut yogurt, etc, helped a lot. 20 mg of pred seems low, but it might work. If you are seeing more mucus and less blood, that's a good thing. Also, I found that potatoes and rice were very easy on my gut, so I ate a lot of them when flaring.
I can't speak about the drugs, I have only taken lialda, pred, and enemas which I find really helpful.
There are so many questions with this illness, and the anxiety that comes along with it is no fun at all. Keep asking questions and read up, this place is a great resource for both info and support.
Posted 11/28/2015 7:30 PM (GMT 0)
What exactly scared you about these medications? I've been on them for over 2 years now and I haven't experienced a single side effect.

See inline answers below.

dusty8105 said...
Also, wasn't sure if starting imuran or remicade would be safe when I don't have this flare under control and weigh so little. Does that matter when starting those meds? Not an issue, these medications are often prescribed to those with moderate to severe uc after lesser medications are tried first. Is 112 a dangerous weight to be at or is this type of weight loss common with UC and expected when starting biologics? Losing 20ish pounds is common during flares, I went from 150 pounds to 122 during my last flare. I've had pancreatitis twice in the past, I'm not a drinker so the cause is unknown but I don't want imuran or remicade to trigger that. Nearly all uc medications have a small chance of pancreatitis, mild anti-inflammatories, immunomodulators, and biologics.

I've been on prednisone for 3 days and seem to have increased mucus in stool. Is that a good sign, bad or neutral? Prednisone can take a few weeks to work. After a few days, it's not likely doing much, yet.

Posted 11/28/2015 7:59 PM (GMT 0)
Primarily what scared me is that they can cause pancreatitis. I have had that twice before for unknown reasons and don't want it ever again. Although, maybe my risk is the same as everyone else's and it doesn't matter if I have had it before or not. If that's the case, I don't mind. iPoop, thanks for all the thorough answers, it really helps. Thanks for the food suggestions momto2boys. I have picked up some avocados.

As for Remicade and Imuran, I would say it would be well worth the risk if longterm success could be gained. I have heard of some people on the medicine for 10 years with continued success but I have also heard a lot of stories of people where the medicine stopped working after 2 or 3 years. So I am not sure what to think. So I guess that is the other thing that I am concerned about. I am glad you have had success with it and that gives me hope.

My GI doctors doesn't believe in prednisone so he has only prescribed 20 mg on a 5 mg taper per week. I don't see how that would really do anything for my current flare as the pred would only be for 4 weeks. I'd like to beat this current flare with pred and save the stronger biologics for a little later in life. After they fail there isn't many options other than surgery. I would try diet modification but don't want to lose more weight. Thanks everyone for your support!
Posted 11/28/2015 8:09 PM (GMT 0)
I found this, which is interesting.

Pancreatic Involvement in Patients with Inflammatory Bowel Disease

annalsgastro.gr/index.php/annalsgastro/article/download/814/595

Patients with IBD are considered to be at increased risk for developing of acute pancreatitis. Bermejo et al described an incidence of acute pancreatitis of 1.5% an incidence similar to that described by Triantafillidis et al who reported an incidence of 1.53% among all patients with IBD seen and followed up for 15 years in their institution. This incidence is more than 250 times higher compared to that expected in the normal population.

INCIDENCE OF DRUG-INDUCED PANCREATITIS IN IBD
Generally, drugs could be a definite cause of acute pancreatitis, in an incidence of 0.1-2%. In patients with IBD, responsible drugs include mainly immunosuppressives (azathioprine/merkaptopurine) and mesalamine, although cases due to corticosteroids and metronidazole have also been described.
In a recent study it was found that most of cases with
acute pancreatitis were a consequence of drug exposure namely azathioprine/ mercaptopurine and mesalazine. Of the remaining, 20.7% were idiopathic, and 12.2% were biliary. The incidence of acute pancreatitis in patients treated with Imuran/AZA/6MP was 3.1%. Female gender and the existence of CD were risk factors for Imuran/AZA/6MP-associated acute pancreatitis.
Posted 11/28/2015 8:19 PM (GMT 0)
Everyone is different but I think a lot of people on this board will tell you that side effects of prednisone can be far worse than Remicade. I got down to 102 pounds in my worst flare (I am female and 5.5. I could see every rib.) Your body can recover fairly quickly from the weight loss. Once I was put on Remicade (imuran did not work for me), I gained about 2-3 pounds a week. And yes....ate a lot of avocado. You will find your body craves fat once you can actually eat.

Did you ask your doctor why the low dose? Most doctors are very happy to throw pred at a flare and large amounts. I assume there is a reason why he is putting you on a lower dose. Many times pred will be used with remicade because many people do not respond to remicade right away. I am guessing that he is thinking the pred will keep you steady until the remicade kicks in.
Posted 11/28/2015 9:01 PM (GMT 0)
I'm not currently on Remicade. I was told that my GI doctor does not believe in prednisone at all and doesn't like to prescribe it period.

He was reluctant to give it to me at all and just wanted to start with the remicade, imuran or both.

I have had 3 flares. The first, I pulled out of because of lialda, the second I pulled out of because of a low dose of prednisone.(20 mg and 5 mg per week taper) My GI doctor does not like pred and I am sure he is expecting it to fail but maybe I am wrong. He was very surprised when I pulled out of the last flare on the 20mg dose.

ElpisUnbreakable, how is the low carb, gluten free diet working for you? Have you achieved remission on Remicade?
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