AHHHH, they want me to take Prednisone!

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bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 5/16/2008 2:42 PM (GMT -6)   
So, since the Proctofoam is not working, my GI has prescribed 40 mg Predisone/day for 2 weeks before tapering off. Wouldn't it have been a better option to try the liquid steroid enema before going to an oral one?
Ugh, and my father was the one who talked to them since I wasn't home and now I can't reach them until Monday!
 
Female, Age 19, Dx w/ UC August 2007
Seasonal allergies
9 Asacol/day, 1000 mg Canasa (caused side effects), Proctofoam
Digestive Advantage (Crohn's & Colitis), 2 pills/day
Calcium chews
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/16/2008 4:24 PM (GMT -6)   

As much as I hate prednisone with my soul and vow never to take it again, I will give it one thing, it gets you out of flares quick. Perhaps your UC is too extensive to be treated with just rectal steroids?

I know how scary that can be though, especially with all the negative things you hear about prednisone. But remember, not everyone has such bad side effects. Just DON'T let them keep you on it for too long. I had a doctor once who kept me at 45mg for 5 months straight and wouldn't let me taper, and finally I just couldn't take it anymore and I tapered myself off and found another doctor.

One important thing to remember... If you want to avoid the moonface as much as possible, try your best to keep your sodium intake low and drink a lot of water. My last time on pred I kept a food diary and counted calories and sodium levels and it was really helpful and I managed to keep almost all the weight off by doing so. It's very tedious though and you will get some ridiculous cravings. One time on it, I ate chili cheese fries like three times a week. I just wanted them all the time, hahah. Just don't give in to them!

Anyway, sometimes the prednisone is a necessary evil to get us feeling better so the maintenance drugs can start doing their job; you just have to be careful and stay on your doc about it so he doesn't forget and keep you on it forever.


Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/16/2008 4:34 PM (GMT -6)   
A short round of pred, starting at 40 mg and immediately tapering, quickly turned around the last mild flare I had. I felt 200% better almost immediately and was kicking myself for putting it off for so long.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal.
 
 


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 5/16/2008 4:48 PM (GMT -6)   
Apologies for straying off topic,but,Ediekristen,I notice from your signature,that you're not on any maintenance meds.Is this wise,especially with Pancolitis?I'm pretty sure that my disease spread all the way throughout the Colon,due to my lack of "med compliance".

Sorry if I sound condescending,I just know how things have gone for me,and know I'm better off with the meds,despite some of the side effects.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Current meds;Awaiting blood work before re-commencing Azathioprine.Pentasa 2 x 500mg 4 x daily.
Got Ryche?


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/16/2008 5:46 PM (GMT -6)   
Oh no, I don't think you're being condescending at all :)

I know it's definitely not wise, for sure. The reason I went off them is I just moved back to Florida from Iowa and started a new job, and now I'm waiting for my new insurance to start (in July) and have no insurance. I looked into drug assistance but it seems the only medication I'd qualify to receive for free/reduced price is Azathioprine, which I'm sort of leery about taking without being under a doctor's supervision and being able to get the routine bloodwork. Asacol always makes me feel worse rather than better and I have a bottle of prednisone in my cabinet, but have no intentions of taking it as I become steroid dependant and can't taper off it without flaring severely. I really haven't ever found a medication that really worked for me and kept me in remission, and I've tried everything short of Remicade/ 6-MP.

Anyway... Basically, I would/should be on medication, but am sort of stuck, and already in a mild flare :( I'm hoping maybe the Digestive Advantage and daily pomegranate juice will help, at least until July. I already have a GI appointment set up for July 18th and told them "I'm not on medication so I might need a colonoscopy and some quick intervention shortly after this appointment" haha.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 5/16/2008 5:58 PM (GMT -6)   
Oh boy,people here knock our NHS system(I live in the UK),but they don't know how lucky they are.I had no idea you guys had so much red tape involved to stay well!If you haven't tried Azathioprine/6MP,please do,but yes,you do need the blood work/supervision done,while on such a drug.

Also,have you tried a different form of 5-ASA drug?I recently switched from Asacol to Pentasa,and am having much better results,in fact,the difference is like night and day!
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Current meds;Awaiting blood work before re-commencing Azathioprine.Pentasa 2 x 500mg 4 x daily.
Got Ryche?


Bum Deal
Regular Member


Date Joined Jan 2008
Total Posts : 34
   Posted 5/16/2008 6:58 PM (GMT -6)   
Hi ComedyDork,
 
It might sound a severe option, but the pred really does seem to work very well and very quickly for the majority of people - if you're stuck in a flare and the stuff you're on isn't doing the job, it's a fairly sure bet to beat that inflammation into submission. Proctofoam is a steroid in itself anyway (Hydrocortisone), but if you're flaring it may not be staying in (pardon the bluntness) long enough to do its job properly, and so another type of rectal med might not be the answer. Whenever I take a high dose of pred to get back into shape, i'm usually feeling better within a couple of days, and i've been very lucky compared to most in that i don't get a lot of side effects. Hopefully, neither will you!
The important thing is to get yourself into remission and feeling well again, or at least well enough for any other meds to have time to take effect. I also agree with Silent Lucidity about 6MP/Azathioprine, it is excellent stuff if you're having difficulties with steroids (I'm being weaned off the steroids with the help of 6MP).
The important thing to remember is that there are still lots of options, medication-wise, and there is a good chance they'll find the balance that settles your system down.
 
Hope you're feeling better soon.
 
DW

Male 30 Years Old.

Diagnosed Pancolitis June 2007

Currently 15mg Prednisolone, 9 tablets Asacol, 50mg Imuran (started Dec 07), 50mg Mercaptopurine (following allergic reaction to Imuran)


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/17/2008 9:31 AM (GMT -6)   
Silent Lucidity said...

Also,have you tried a different form of 5-ASA drug?I recently switched from Asacol to Pentasa,and am having much better results,in fact,the difference is like night and day!


I did try Pentasa and had no results, good or bad, just BM's filled with those little balls inside the capsules, haha. I do plan on trying Lialda first if my insurance will cover it (the last one didn't and it was $125 a month so I decided against it) and then maybe moving to Remicade if my doctor will let me (they all seem so against it because it's the "last resort" before surgery, but I've wanted to take it before it was approved for UC!)

Sorry for hijacking the thread ComedyDork :)
Have you started taking the pred or are you going to wait until Monday to talk to the doctor?
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 5/17/2008 9:18 PM (GMT -6)   

That's okay, ediekristen! I'm sorry you don't have any insurance! I guess I'm pretty lucky that my dad's insurance will cover me for a couple more years.

Nope, I haven't started the prednisone yet. A lot of these side effects sound even worse than flaring! I think I'd rather have UC cramping (which actually isn't too bad) than joint or muscle soreness. I already get wrist and fingerpain if I write too much or play instruments for a bit. And I read type II diabetes?! I'm already genetically at risk for it since I have a grandparent on both sides of the family with it. Not to sound too superficial or anything, but I already have enough facial/body hair w/o any drugs! I could just go on and on.

I'm also scared that b/c I'm such a tiny person (5 ft. 84 lbs) that prednisone will have a bigger negative effect on me. I mean, low dosage hormone birth control pills even gave me unusual side effects (diarrhea, nausea, vomiting, worse cramping than before). And the other thing that worries me is that it'll weaken my immune system. I've had horrible allergies for the last month or two and I have a really bad cold as of last week. Should I really be starting steroids when I'm sick with something else, too?

Bum Deal said...
but if you're flaring it may not be staying in (pardon the bluntness) long enough to do its job properly
Just to clarify, are you saying that I might not be retaining it? I'm pretty sure I am b/c I take it right before I go to bed, and don't use the bathroom until the next morning. I was just wondering about the liquid enema b/c I thought it goes further up the colon.

 


Female, Age 19, Dx w/ UC August 2007
Seasonal allergies
9 Asacol/day, 1000 mg Canasa (caused side effects), Proctofoam
Digestive Advantage (Crohn's & Colitis), 2 pills/day
Calcium chews
 


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 5/18/2008 9:48 AM (GMT -6)   
You could ask the doctor about upping your asacol to 12 a day and see if that works.
Jessica 26/F On Entorcout again...
dicyclomine 10Mg before bed
Citalopram 20 MG
Colazal 3X3/day
Culturelle once daily
omeprazole(for acid reflex)
Tried (Entorcort EC 9ml/day and Prednisone, Asacol)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 5/18/2008 10:27 AM (GMT -6)   
Hana24--I already asked my GI about that and he said 9/day was maximum.
Female, Age 19, Dx w/ UC August 2007
Seasonal allergies
9 Asacol/day, 1000 mg Canasa (caused side effects), Proctofoam
Digestive Advantage (Crohn's & Colitis), 2 pills/day
Calcium chews
 


UChick
Regular Member


Date Joined Jun 2006
Total Posts : 170
   Posted 5/18/2008 7:00 PM (GMT -6)   
I don't think that 9/day is a maximum for Asacol especially since i take 12/day and have for about 4 years now. Asacol is just a maintenance drug so maybe your GI doesn't think it will really do anything. 2 weeks on prednisone isn't really that long. i took it for a couple months one time. good luck
Age 18
Diagnosed September '01 : Remission since July '02
Asacol- 4 pills 3xday
Azathioprine- 75mg 1xmorning
Centrium A-Z multi-vitamin
Took Remicade 3 times, BIG FAN!!!!
Have Taken: Prednisone, Flagyl, Zantac (for acid reflex)


dreamers
New Member


Date Joined May 2008
Total Posts : 11
   Posted 5/19/2008 8:57 AM (GMT -6)   
i like to call prednisone the devil!!! I literally cried when my doctor told me i had to go back on it!!!.. As much as I hate it, it is literally the only thing that works for me.. and trust me it made me feel a million times better!!!

**Stephanie**
 
23
Severe UC since 1999
 


yuckygut
Regular Member


Date Joined Feb 2008
Total Posts : 214
   Posted 5/19/2008 10:08 AM (GMT -6)   

comedy- speaking from waaay too much experience with prednisone, if that is what is needed to break your flare so be it, and try to get tapered off within a reasonable time.  long term it was really rough on me, but you dont want to keep flaring forever either.  Good luck,

----------------------------------

yuckygut

diagnosed 1998

now off prednisone and colazal

drink 1 Haldi daily tongue   


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 5/20/2008 9:21 AM (GMT -6)   
I talked directly to my GI yesterday (I usually talk to his nurse and he didn't sound too happy...) and told him my symptoms. He said that maybe we can avoid the prednisone because my symptoms don't sound as bad as the nurse described. And he said that proctofoam takes 3-4 weeks to kick in, and I've only been on it consistently for a week and a half. So he said to keep that going for 3 months and he prescribed an antibiotic (starts with an "R"). He said that it only kills bad bacteria so I shouldn't worry about increasing my probiotic dose. Anyone purposely prescirbed an antibiotic for UC?
Female, Age 19, Dx w/ UC August 2007
Seasonal allergies
9 Asacol/day, 1000 mg Canasa (caused side effects), Proctofoam
Digestive Advantage (Crohn's & Colitis), 2 pills/day
Calcium chews
 


snickers0506
Regular Member


Date Joined May 2008
Total Posts : 63
   Posted 5/21/2008 7:04 AM (GMT -6)   
I've taken 6mp in the past with no side effects.  I won't do prednisone. 

40 yrs young
dx UC (pancolitis) Dec 03 then re-dx to Crohns colitis April 04 then re-dx again to UC Dec 07-currently taking no meds and in remission


tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 5/21/2008 1:09 PM (GMT -6)   
I am currently taking 20 mg pred having tapered down from 40mg which i took for 3 weeks. This is my 6th course of pred over the last 6 years and can honestly say the side effects this time have not been so bad. I have been very strict (although slipping a bit now) about my calorie intake and salt intake and been drinking lots of water and although I have a bit of a moon face it's nothing like it has been in the past.  All my family who are very honest with me sometimes a bit too honest have said that I just look healthier this time. I have not put on any weight, I have no aching muscles or cramps. Maybe a bit of extra facial hair but nothing some wax strips don't sort out lol. And I feel well which is the most important thing.
32 year old female
UC diagnosed 2001
Asacol 6 per day
Azathioprine 50mg started 4/08
Steroids 40mg per day

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