Very confused about Pred when reading here.

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Joylu
Regular Member


Date Joined Jan 2008
Total Posts : 362
   Posted 4/17/2009 7:08 AM (GMT -6)   
I am in absolute fear of taking Pred, and yet my doc is constantly threatening to put me on it.  I have no D, just small stools along with some blood.(maybe 3 times a day)  Urgency is my biggest problem, as even though I do not have D, when I gotta go I gotta go now!
I was under the asumption that Pred was a last resort for people with much blood and D, and was put on it to stop them from having to end up in the hospital.
I have read some here say it was the best thing they ever did. Yet I have read many more that said the symptoms come back as soon as you're weened off it.  If that is the case, I don't understand going on it at all.  Am I confused, or missing something?
 
One poster just said she gained 30 pounds in 3 weeks!  That would send my blood pressure through the roof.
Every time I am about talked into trying it(for urgency only, as the blood isn't that much), I read something like that, and I say, no way!
I know everyone's different, and many can tell a different story about Pred, but am I wrong in reading most people's symptoms do return after going off the med?
Then some say they become Perd dependant?  How scary is that to have to stay on such a dangerous drug?
 
I am so confused about this drug, and the horror stories from most(no not all) are so frightening.


Ulcerative proctitis. On Asacol 3 3x a day, and Meslamine enemas nightly.
 Now on Hydrocortisone suppositories for 2 weeks.
 
Urgency is still my biggest problem.  rarely have D, but extreme gas and urgency at any given time.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/17/2009 7:37 AM (GMT -6)   
Actually, Prednisone is the second-line drug for IBD. It's used short-term to induce remission, then tapered off. While the short-term side effects (fluid retention, increased appetite, "moon" face, insomnia and mood changes) are annoying, they are also temporary. It's long-term use that causes serious side effects. Short-term use of steroids for IBD has less potentially serious side effects than drugs such as immunosuppressants or biologicals.

As with any other medication we take, Pred works better for some than others. "Pred dependent" is when the person's symptoms return if they go off the medication. In those cases, usually another med, such as an immunosuppressant, is indicated to enable them to stop the steroids without a return of the flare.

In regard to weight gain, this is a result of fluid retention and increased appetite. Steroids cause your body to retain sodium, which then causes water retention and weight gain. They also cause increased appetite in many people, so it's hard not to overeat. The weight gain can usually be controlled or limited by controlling your sodium (salt) intake as well as your general calorie intake.

Remember that those of us who are here are the ones who have more problems. The vast majority of people with UC take a 5-ASA, add Pred for their occasional flares, and do very well. Those people, however, have no need for a support group such as HealingWell.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 4/17/2009 7:46 AM (GMT -6)   
Weight gain... when I was first put on the high dose of pred, I actually dropped alot of weight. I had increased energy and no joint pain. And NO appettite. It wasn't until I started weaning off that I got an appetite. I started watchin what I ate, and only gained 10 pounds back ( I had lost 40 )(so I could afford to gain 10 back ) .. LOL.
As for moon face and such... I didn't get the moon face or the bloating until I started to wean again. It started when I had weaned down to about 20 mg. I was on 40 mg for months till symptoms got under control. Now that I am in my last week of this drug ( I should be weaned off by middle of next week) My moon face is gone... the bloating of belly, hands, and shoulders ares till there but lessening.
If urgency is your main problem... ask your doc about pamine forte. My GI put me on that for the urgency. And it really worked for me. It seemed to settle everything down. And the only side effect I recieved from that is dry mouth. ( sometimes pretty bad) But it really helped with my urgency and spasms.
 
38 yr old male, NE Ohio, diagnosed Aug 2008, but been with symptom since Nov 2007
30 mg pred, 9 balsalazide, rowesa nightly, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera tabs
Following gluten free diet as well as spinach/sunflower regime
**down to 25 mg of pred 12/25/08 **down to 20mg of pred 1/7/09**down to 17.5 mg 1/22/09
**down to 15 mg of pred 2/3/08**down to 12.5 mg of pred 2/13/09**down to 10 mg 2/26/09
MED CHANGE: 1/13/09-- 4 Lialda, 2 Pamine Forte, 1 Florajen3 probiotic, 2 Aloe Vera tabs, Rowesa every other night, 20 mg of Pred, Lomotil as needed, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol
 
 
 
 
 
 
 
 
 
 
 


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 4/17/2009 7:51 AM (GMT -6)   
Small doses of prednisone work well for some, and as Judy mentioned, you probably won't hear from people who are managing well with their treatments because they're not going to get online for further help.

Also, being prednisone dependent doesn't necessarily mean that you have to stay on prednisone forever, but that you will have to stop taking prednisone and may probably need to start looking at other drugs such as 6MP, Azathioprine, Remicade, Humira.

Just as each individual reacts differently to prednisone, each doctor has a different approach to using prednisone. Some prescribe it often, whereas others avoid it as much as possible.

Before getting on prednisone, you could speak to your doctor about trying cortifoam.
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine, 4800 mg Asacol
VSL#3 x 3 times a day, Metamucil wafers
Vitamin E enema or Mesacol/Asacol enema at least once a week
Spinach & sunflower seed diet


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/17/2009 10:46 AM (GMT -6)   
You might try it and see what happens for you. It's unlikely that trying a course of prednisone once will ruin your health. It's been around for a long time, and really is a miracle drug. I hate taking it, but am so grateful it exists when I flare badly and am really sick.

I don't think most people's symptoms reoccur when they go off prednisone -- but of course it isn't a cure. If symptoms come back it might be because they taper too quickly, which is so tempting to do because of the weight gain etc.

It's an individual decision whether you are sick enough to put up with the side effects of prednisone.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone, 40-30-25-20-15... Humira denied, started Remicade 4/12. 


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 4/17/2009 11:57 AM (GMT -6)   
try getting the book coping with prednisone - it has a good diet suggestion. If you can go on a low salt diet and ignore the cravings then you will just gain water weight which will be gone once you are off of it. The first time I was on it that worked for me. The last time I was on it I was on vacation and ate out alot and drank some and gained 35 pounds in a month or too. But for me, pred was the only way I was going to enjoy my vacation
Jessica 27/F
Remicade
Lialda 4.8GM
Citalopram 20 MG


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/17/2009 12:24 PM (GMT -6)   
joylu, there's no real easy answer when it comes to pred and if you should take it or not, with the symptoms you're describing I wouldn't go on it either (follow your gut instincts)...Pred is famous for having symptoms come back once you start to taper, it's known as a band-aid med, it's used (by a good GI) to either give you short term relief from constant D and frequency or as a booster while waiting for maintenance meds to kick in.

I don't know why some GI's prescribe it like it's candy, it can be a nasty drug and most do suffer short and/or long term side effects, not to mention for many it can stop working all together so when you really need it you cannot rely on it working because it can just stop working for a person usually the more they go on it, the less and less it will work. Even when I was at my worst my first GI was reluctant to put me on it but he did and although it was the best thing ever for me, it was very short lived and then it eventually just stopped working for me all together.

With your current symptoms I wouldn't go on it either especially if frequncy isn't one of your major issues right now or D. Thank goodness the choice is yours, I'd be leary of any doc that tried to force or threaten me with pred with the symptoms you're describing (which by the way are almost similar to mine, only I don't have any blood) urgency is my main issue along with frequency which for me is an average of about 5X/day but mine are formed. And I know darn well my GI would not put me on pred with my current symptoms.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/17/2009 12:44 PM (GMT -6)   
Prednisone is just something used to get UC under control if mesalamine alone isn't working. It's used for a short duration, and while it does have side effects, they go away once the pred is stopped. Weight gain is just because prednisone increases your appetite so if you watch yourself and don't give into the cravings, you won't necessarily gain weight. I've been on prednisone before for sinus infections too. It's an anti-inflammatory and it works rather quickly. In your case, I'd imagine you'd be given a low dose and taper off pretty quickly.
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09.

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/17/2009 1:07 PM (GMT -6)   
Prednisone causes the body to retain sodium (salt) and lose potassium. This combination can result in fluid retention, weight gain, and bloating. Measures that can be used to avoid fluid retention in the first place are eating a reduced sodium diet and increasing potassium intake through potassium-rich foods (such as bananas, cantaloupe, grapefruit, and lima beans).

Higher calorie consumption is also typical while taking prednisone because the drug can cause an increase in appetite. Some tips to avoid gaining weight include decreasing calories consumed each day, decreasing fat, and eating several small meals a day instead of 3 large ones.

Many people are taking prednisone due to an inflammatory condition or a chronic condition. These conditions often make physical activity difficult. When possible, physical activity can help prevent or lessen the weight gain from prednisone.

Prednisone can also cause the redistribution of fat, which makes even a small amount weight gain more intolerable. The weight tends to be located in the face, back of the neck, and the abdomen.

The good news is that this side effect tends to reverse when the dosage of prednisone is taken below 10 mg/day. The fluid retention and increased appetite will decrease. Any weight gain, however, will not reverse itself. Sticking to a healthful eating plan and getting regular exercise will be needed to take off the pounds. It will be easier to do both of these things when the underlying condition for which the prednisone was prescribed is resolved, or under control.

Joylu, don't go on it if you don't feel you need it (like I mentioned in my reply above).

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Joylu
Regular Member


Date Joined Jan 2008
Total Posts : 362
   Posted 4/17/2009 2:53 PM (GMT -6)   
Thank you everyone. I will stay stubborn in not going on this med until he has exhausted all other things.
Ulcerative proctitis. On Asacol 3 3x a day, and Meslamine enemas nightly.
 Now on Hydrocortisone suppositories for 2 weeks.
 
Urgency is still my biggest problem.  rarely have D, but extreme gas and urgency at any given time.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/17/2009 3:10 PM (GMT -6)   
Good for you, use it for when it's really needed, it shouldn't be used casually like that...if you aren't having severe D (with or without blood) a good 10 or more times a day and in a horrible flare then it's not a good idea to take nor is it necessary.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Joma
Regular Member


Date Joined Nov 2008
Total Posts : 222
   Posted 4/17/2009 8:46 PM (GMT -6)   
joylu, i too was scared of taking pred before I did for the first time. I avoided for years and suffered alot. When I finally did take it for a particularly bad flare I found that , for me, it was not as horrible as it can be for some and it gave me great relief. I will use it again if I need too and I am thankful that it exists. I did not experience any side effects except an increase in appetite which was not unmanagable. I acheived complete remission and did not have problems tapering off. So pred does not have to be a horrible drug, it can be a great drug, you do not need to be overly afraid of at least trying it if you need to and you do not need to suffer with UC symptoms if other meds dont work for you. That being said, I agree with the posters who advise caution and trying other meds before you turn to it.

gurgling tummy
Regular Member


Date Joined Aug 2006
Total Posts : 166
   Posted 4/18/2009 12:35 AM (GMT -6)   
Joylu,
I know that my post earlier today was a little harsh complaining about what the pred is doing to my body. Yes, I have gained a crap top of weight but I am also partly to blame for that because I am giving in to the cravings and stuffing my face, and I ate potato chips and that is mostly the reason that i swelled so bad. What I didn't mention was that since I started it I have had some beautiful bowel movements, no blood, no pain, they were formed, the gurgling has selltled down a little bit and most of the cramping has calmed down. Like people have already posted we look for comfort when we are at our worst, which was me this morning, not being able to walk but I also know that when I do taper off of the pred then I can start working on my body size again. We do what we have to do and take what we have to take to help us get through physically and come here to get us through mentally.
It is your body and no one can tell you what to take or when, your doctor can make recomendations and you can and should do all the research that you can so that you feel comfortable with the treatment as well. The doctors don't always know everything there is, I have had to bring in printouts from the drug manufacturers to show my doctor because he was wrong in trying to keep me on a med when I was alergic to it. Your best defense is knowledge, only you know what you are going through and what you can handle, and talk to your doctor about exactly what you are feeling and thinking and make sure that you have confidence in him and that he is actually looking out for your best interests and if you don't feel that comfort then keep looking until you do. I have finally (he is #5) found a very good GI and he discusses everything with me, good and bad.
Good luck, there is a lot of information out there to take in but you will get a handle on it and everyone on this board is here for you day and night. I work graveshift so if you ever need someone to talk to or just to whimper and cry to I have nothing but time.
Hang in there,
Em
((((HUGS))))
*~~*Emily*~~*
Diag. Aug 06 (Proctosigmoiditis), finally diagnosed with Fibromyalgia 12 August 08, Paxil (1 a day) for Depression & anxiety, Azathioprine (1 every morning)Morphine (three a day) for pain, Tramadol (as needed for breakthrough pain),  Fioircit (for migrains), Phenergran (for nausea), Prednisone (10 mg tabs 4 a day), Omeprazole (for gerd from the pred), Tylenol PM (to actually get some sleep every once in a while), Calcium (for osteopenia), aloe juice (2Xs a day), chinese herbs for energy.

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