What to expect if I need to start prednisone? Leaving the country on vacation!

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chikinnooodle
Regular Member


Date Joined Oct 2017
Total Posts : 47
   Posted 6/13/2018 3:23 PM (GMT -6)   
So two weeks ago I ate some heavy spinach salads and got a good cleansing. Haven’t been normal since. Here I am 3 days before we are scheduled to leave for France & Portugal for two weeks and I am having several loose bms in the morning with mucous and a smidge of bleeding (I think) and one or two after eating. I’m currently on 3 Lialda & oral Uceris. Saw 2 full Lialda pills in my poop and Today I decided to throw in the rectal Uceris foam. I’m surprised this has happened so suddenly when things were going well... could my salads have started a flare? Submitted a calprotectin (sp?) sample today.

And my next important question: I have never taken prednisone. I am sensitive to stimulants. If I end up needing it, what side effects can I expect to experience early on during my trip? Are there low doses that can be requested first?

I am so stressed that I want to cancel... but that means a real pain in the butt for a family of 4.
Diagnosed Aug 2017, mild UC activity
Current meds: 2xLialda daily
No diet modifications.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13219
   Posted 6/13/2018 3:42 PM (GMT -6)   
Sorry to hear things are upset just before your trip; not fair. Taking pred along is prudent. For me, I experience my first significant side effects from the pred at 2-weeks in (everyone is different though, some sooner). The dosage has a lot to do with what you might experience. Taking 20-mgs of pred will produce less worrisome side effects (i.e., mild irritability and insatiable appetite) then 40-mgs (i.e., insomnia, nightsweats, moodswings, rapid heart beat) would. Not sure what dose they're considering dosage wise.
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

My reviews on Yelp and Trip Adviser will be terrible: @$10,000 a night with uncomfortable beds and awful food, but at least the drugs are good at this hospital.

chikinnooodle
Regular Member


Date Joined Oct 2017
Total Posts : 47
   Posted 6/13/2018 9:33 PM (GMT -6)   
My doctor is sending me with a 40mg taper. I hope I won’t need it...
Diagnosed Aug 2017, mild UC activity
Current meds: 3xLialda daily, oral Uceris

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 6/13/2018 10:00 PM (GMT -6)   
I loved pred the first time I took it. Made me feel better almost instantly, gave me energy, was the first time since diagnosis I felt completely back to normal. You probably won't get any worrisome side effects until you've been on it longer, other than maybe trouble sleeping.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018.
Current meds: Delzicol, 6, 2xday; Rowasa nightly; singular and Allegra for allergies; Xanax. Have tried Bentyl, Donnatal, and Levsin; dont help.

countess18
Regular Member


Date Joined May 2016
Total Posts : 276
   Posted 6/14/2018 9:12 AM (GMT -6)   
my advice is to start the prednisone now- maybe even at 25mg which is a lower dose . I recently cancelled a 2 week trip to Italy for my family of 4. I was on Uceris and having the same symptoms as you. When the trip got closer all hell broke loose (even starting 40mg of prednisone 4 days before the trip did not save it). I wish I had started the prednisone sooner and not messed with the Uceris. Uceris felt like speed to me - not that different from prednisone. 40mg of pred is a lot and you will feel very energized on that dose --that's why I say-- start the prednisone now -maybe at 25mg to see if it helps- then you can get through your trip and wean when you get back. If only I could go back in time and take my own advice- Uceris sucks.
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone/balsalzide wean
started Humira 11/17/17, -5/17- failed Humira
started Remicade 6/8/17
past meds- cortifoam, canasa, rowasa,balsalazide, prednisone

chikinnooodle
Regular Member


Date Joined Oct 2017
Total Posts : 47
   Posted 6/14/2018 10:05 AM (GMT -6)   
I feel pretty certain that it’s a one week taper pack, not enough to get me through a 2 week trip.
Diagnosed Aug 2017, mild UC activity
Current meds: 3xLialda daily, oral Uceris

countess18
Regular Member


Date Joined May 2016
Total Posts : 276
   Posted 6/14/2018 11:27 AM (GMT -6)   
I'm not telling you that I would ask to get put on prednisone now instead of Uceris and this way you will knock that inflammation down and maybe even be able to eat on the trip etc. You could ask for a new script and start at a lower dose so the side effects won't be as bad. I waited on Uceris and was having minor symptoms- then got much worse- too late for prednisone to save the trip. This is a big trip so I would not mess around and you will feel more stressed as it gets closer so the flare up could worsen.

I cried for the entire 2 weeks that I was home instead of Italy. You don't want to have to cancel.
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone/balsalzide wean
started Humira 11/17/17, -5/17- failed Humira
started Remicade 6/8/17
past meds- cortifoam, canasa, rowasa,balsalazide, prednisone

Y1, Jessyca Bercot
New Member


Date Joined Jun 2018
Total Posts : 1
   Posted 6/14/2018 3:57 PM (GMT -6)   
I've had UC since 2010 and the first thing they gave me was prednisone. skull If you neeeeeed to take it for very short periods of time and in small doses, do what you have to do, but whatever you do, dont let them bully you into taking something like 40mg a day for a few months. This stuff is OF THE DEVIL!! And you will have PERMANENT issues that started with prednisone, regardless of what they tell you.

Nevermind that you get so hungry that once you've eaten everything in your house.... the fridge itself, and possibly your own arm... Add to that: getting moody and easily frustrated, impatient, and angry, and so tired from it messing with your sleep, that you just want to cry. I now also have to pluck my chin. yay. It made me gain about 30 pounds... which I never lost the weight they promised would just come off when I weaned off it. After that 30 pounds, I have steadily gained (with a few yo-yo's), to where now I'm about 80-100lbs overweight.

But the WORST thing was that it caused me to get pancreatic attacks. I don't know if you're familiar with what that is or not, but its the most painful thing I've ever experienced..on par if not worse than childbirth (because with a pancreatic attack there is no respite...even labor contractions die down for a minute so you can breathe. This gets increasingly worse with no breaks until you think you are going to and want to die). My Dr. didn't know what caused the attacks at first, so I would spend a week in the hospital hooked up to IV pain meds and fluids and on a clear liquid diet only. Then when I was well enough to return home, the next day I had to go back to the ER because I got another one. This pattern repeated itself 2 more times and not counting the single days I was at home, I spent about a month straight in the hospital, until the Dr. finally realized it was the prednisone...(too high of a dosage for too long). At the end of each week I was terrified to be discharged even though I wanted to go home, because I was afraid it would come back. I would avoid it like the plague if I were you, esp if you are sensitive to stimulants.

After several kinds of oral meds didn't work, they finally prescribed Humira, which has kept me out of the hospital for about 7 years. I still have discomfort and occasional diarrhea (but not bloody or with mucous) when I eat things I know better than to eat or if I am going through a particularly stressful time, but as far as flare-ups go, I've not had any bad enough to go to the hospital. So Humira has worked great for me... however, I would not just take Humira and forget about it. It is a chemical drug, and zero of those are good to take for a really long time.

They say autoimmune diseases cannot be cured, and they are correct if you only use conventional medicine. (This is where I lose a lot of people and they start to roll their eyes).
Conventional medicine is reactive and only treats symptoms, not the cause. They always say the cause of an illness is not known, but it's because they don't look for the cause... let alone a cure.
If you use Humira to let your gut heal, you can heal yourself with the right diet, and eventually come off the drugs. I've known people to do just that and have been clear of their "chronic" illnesses for upwards of 20 years.

I'm not a person that is good with sticking to a protocol or routine so it has taken me longer, but there are things I have slowly added, substituted, and eliminated from my diet that has helped me tremendously. A cashier randomly gave me a book called "patient heal thyself" Author Jordan Rubin, N.M.D., C.N.C., survived terminal Crohn's disease. His story of his experience with alternative medicine. Now he works with Dr. Josh Axe, a medical doctor, chiropractor, and now incorporates natural health to help his patients fight and prevent illness and disease. I bought his book "Eat Dirt" and it has been a tremendous help in my process. I hope this gives you an idea of where to start. Good luck!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16731
   Posted 6/14/2018 4:05 PM (GMT -6)   
pred helps me literally overnight (but some respond slower), if you need it, take it. don't spend your trip miserable. I hope you don't need it.

What can you expect on pred... well, that's a loaded question, bad temper, volatility, irritability, insomnia, insatiable appetite, perhaps weight gain (usually showed up down the line), water retention, sometimes a fat face & acne, but those wouldn't happen that quickly either.

I doubt it was that spinach salad. It's nice to have something to credit for the diarrhea, but usually it's nothing you can put your finger on. Even without the salads, I bet you would be in the same place - unless you have some sort of GI bug. Definitely get stool tests.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

chikinnooodle
Regular Member


Date Joined Oct 2017
Total Posts : 47
   Posted 6/14/2018 4:30 PM (GMT -6)   
I leave in 2 days. Not sure I can submit stool tests that fast. Considering going to the ER, can they check even if I don’t need to poo??
Diagnosed Aug 2017, mild UC activity
Current meds: 3xLialda daily, oral Uceris

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 6/14/2018 10:13 PM (GMT -6)   
No. You have to submit a stool sample and the results take at least a day or two.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. Started 50 mg pred 6-9-18 & re-quit smoking 6-13-18. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax.

chikinnooodle
Regular Member


Date Joined Oct 2017
Total Posts : 47
   Posted 6/14/2018 11:07 PM (GMT -6)   
With no fever, no elevated WBC count, and no recent history of antibiotics, they did not want me to do a stool culture at the ER.

And I just discovered my prednisone taper is for a whole month. Ughhhhhhh
Diagnosed Aug 2017, mild UC activity
Current meds: 3xLialda daily, oral Uceris

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 6/15/2018 7:15 AM (GMT -6)   
It would be pointless to have a one-week pred taper for UC. Unless you just want to go right back to flaring.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. Started 50 mg pred 6-9-18 & re-quit smoking 6-13-18. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13219
   Posted 6/15/2018 7:34 AM (GMT -6)   
Ditto Sara14, one-week course of pred isn't much more then a placebo.

chikinnooodle
Regular Member


Date Joined Oct 2017
Total Posts : 47
   Posted 6/15/2018 8:57 AM (GMT -6)   
Good to know. Thanks, guys.
Diagnosed Aug 2017, mild UC activity
Current meds: 3xLialda daily, oral Uceris

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13219
   Posted 6/15/2018 9:06 AM (GMT -6)   
I'd insist on at least 2-months of pred, enough that the immune attack mode is turned off so you'll have the best odds of a remission as a consequence of your dance with the devil (pred).

chikinnooodle
Regular Member


Date Joined Oct 2017
Total Posts : 47
   Posted 6/15/2018 9:45 AM (GMT -6)   
After years of showing high calcium on my blood tests, an endocrinologist finally did an ultrasound of my parathyroid and sees what he thinks is a cyst. He also found consistent high blood calcium on my last two blood tests. He calls this morning and says this is consistent with primary hyperparathyroidism and I have to go for a nuclear scan of my parathyroid glands. My sister had same issue and surgery. So what does this all mean? I’ve had high calcium for 15+ years and I am at high risk for osteoporosis. Confirms that I DO NOT want to take steroids. How quickly do they raise osteoporosis risk?
Diagnosed Aug 2017, mild UC activity
Current meds: 3xLialda daily, oral Uceris

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 6/18/2018 10:25 AM (GMT -6)   
What did you decide to do regarding the prednisone?
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. Started 50 mg pred 6-9-18. Trying to re-quit smoking. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax
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