First Post,First forum, Prednisone made me do it

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Whyohwhy
New Member


Date Joined Aug 2008
Total Posts : 15
   Posted 8/31/2008 2:59 AM (GMT -6)   
Hey everyone, After lurking on theses boards for Since my diagnosis in april '07, I finally joined one!
I want to thank everyone reading this for there contributions to this wonderful web of communication we have here online. It's been a big support for me this last 16 months.
I really need some advice about prednisone.

The dreaded day has come, after 16 months and no real severe flare up since the one the cause me to get diagnosed, the asacol isn't doing the trick anymore. I'm on 400 mg x 12 for the last 4 months. Seemed to really help going from 2.4 a day to 4.8 for about 2 months, then this last flare.
I could go into more details if neccesary but I'm trying to be brief.
Bottom line is the doctor (what a surprise) wants to get me on 40 mg of prednisone. so i researched this drug a lot lately and now I'm very scared to even start this stuff. But like most What choice do I have right?
I'm trying lots of supplements now, and I quit drinking finally, and this is a big kick in the ass to finally come to terms with the fact that my life will never be the same, I cannot continue to live as if i don't have this disease. No more take the pills and act like normal, as my doctor said to do. I want to fight this thing as much as i can, as naturally as i can. but i know that may not be enough and Prednisone seems like the only answer.
Are there other answers?
Should i hold out until my symptoms get worse, not to be stubborn but to maybe allow my body more time to see if it can heal itself, especially with my more pro-active approach?

I have a million other questions and topics in regards to supplements and dieting, but this Prednisone thing is such a scary step for me, like i said, a day I feared. It's so confusing to me the last 24 hours, I just don't know what to do. Any advice would be gratefully appreciated.


P.S. WOW, I'm just realizing the amount of rambling and venting i can do on here now that I'm singed up on this board,lol. I apologize ahead of time, I'll try to keep it at a minimum.

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 8/31/2008 6:47 AM (GMT -6)   
what kind of ulcerative colitis do you have? I have left sided. I HATED prednisone and swore I'd never go on it again (even though I doubt that's a reality). I told that to my dr and she put me on rectal steroid enemas.... and they seem to be helping me pretty well.. even though mornings are still pretty iffy. There are all sorts of options, but you can be sure that prednisone will be the fastest solution, just not the most desired because of the side effects in my opinion.

anyways... sorry you have to deal with this. I know how ya feel about you can't act normal and pretend ya don't have the disease. It's a hard knock life for us LOL.
Kara, 21F Married.
Diagnosed March, 2007, but was going through testing for a year before diagnosis.
Left Sided UC. Currently in a flare.
Medications:
Lialda - 4 pills in the morning w/ food.
Steroid Enemas


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 8/31/2008 6:58 AM (GMT -6)   
The more I think about the more I don't understand why more people aren't on rectal meds, along with milder oral meds.. it just seems the right thing to do long term.

Diagnosis Oct 07 and then Aug 08: 2 Patches of Mild Chrohn's Colitis (unconfirmed)
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate)


tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 8/31/2008 7:06 AM (GMT -6)   

I have been taking oral pred on and off now for 7 years (have pretty much had a flare each year) which needed pred to get under control.  They have helped in the past when nothing else would.  Now having to take azathioprine which scares me even more and still not off pred. Think I am getting steroid dependant. Yes the side effects from pred are horrible but they go when you are off the drug although unfortunately I now have osteopenia from steroid use which is quite sad. Not that it causes me any bother at the moment but I worry about what the future holds. 

I think that short courses of steroids are ok but its when like me you need longer courses and you don't have much time in between courses that they can cause a problem.

 

 


32 year old female
UC diagnosed 2001
Asacol 6 per day
Azathioprine 100mg started 4/08
Steroids 5mg per day


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/31/2008 7:26 AM (GMT -6)   
Welcome to HealingWell, Whyohwhy. I'm glad you decided to post; this is a great place to get advice and support.

First, you never have to take a medication you don't want to take.

Prednisone short-term most often causes the "moon" face, acne-like breakouts, water retention, increased appetite, sleeping problems and mood changes. Some people have all of these, some none, and these effects go away after the Pred is tapered off. Taking Prednisone or any other oral steroid short-term (3 months or less) can be a good thing. Many people start getting better within a few days, are back in remission after a week or two, and can start tapering off the Pred. The remission may last months to years, and so the Pred may be a good investment. Where it's a problem is when you stay on it for a long time; then it can have really serious effects that don't go away after you come off the Pred.

Good for you on the lifestyle changes, but they probably won't stop the flare without help. Left untreated, the flare will most likely get worse and will take longer to bring under control. As the previous posters said, if you have proctosigmoiditis, you might ask to try a steroid enema first, as they tend to have fewer side effects. If you have pancolitis or left-sided colitis, though, you will still need oral meds along with it because enemas won't reach that high in your colon.

I'm sorry you're having this problem, but the fact that your first remission lasted 16 months is a very good thing. It increases the chance that once you get into remission again it will last longer.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Whyohwhy
New Member


Date Joined Aug 2008
Total Posts : 15
   Posted 8/31/2008 2:46 PM (GMT -6)   
Thanks for the posts everyone, Based on what you've said so far , I'm realizing the same thing that i keep coming to with the disease, It's all on me. I have to decide everything on my own cause i am my best doctor at this point.

A couple points. I HAVE NOT been in remmission for 16 months, LORD I wish! The last 16 months feel like somewehre in between remmisiion and a flare. Meaning, lots of symptoms, like fatigues (my worst enemy),
loss of appetite, (i've lost 25-30 lbs.) deppression, lots of bm everday etc. The odd thing is, other than my first flare that caused me to get diagnosed, I never had blood or excessive mucus until 2 weeks ago. This was one of my next topics, I've read this on other posts but never really got an answer. What do you consider a flare? what do you consider remmision? Maybe i should post another topic on this.

Judilyn, I think you are probably right about my lifestyle changes not being enough right now. I just hate to open the Prednisone "can of worms". My flares especially and most of the last 16 months I get severe constipation, not diahrea like everyone else seems to have. Is that odd? after 6 weeks of my first flare I got a colonoscopy and the diagnosis, I never had to get on prednisone then. He sent me home with 2.4g a day of asacol and rewasa( i forget the dose). And I felt better almost right away. I even wonder if the col. prep cleansing may have aided in my recovery. This flare is only 2 weeks now, making me wonder if i could buy so more time with the magical white pill.

Oh almost forgot, I was diagnosed with Pancolitis with possibility of Chron's disease. Another confusing thing to me, cause i thought the biopsy should tell the difference. Again so much confusion, seems like the more i look for answers the more confused i am.

As you can tell I have lots of questions and topics so I'll probably be a regular on here, I'll try to get better at theses posts, I think I ramble and get off topic a lot.

take care everyone
God will take you through hell, just to make it to heaven.


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 8/31/2008 11:51 PM (GMT -6)   
Any increase in symptoms is a flare, any mucous , blood etc. Remission means you have no symptoms of UC at that time, which means you are only using the bathrooma few times a day and having formed stools without blood and mucous. That is proper remission.A lot of us suffer from IBs too which can mean that we constantly have d.
welcome to hw
Marty
                                     keep the faith 

         asacol/proctifoam/
Zoton (lansoprazole)/pred/colofac


       
                   http://www.myspace.com/martylogue


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/2/2008 2:11 AM (GMT -6)   
Coming to grips with this disease was tough to do for me also. After dx, I took my meds and tried to live life as I had before, despite all the signs that were telling me that that wasn't working. It wasn't until my doctor and I discovered that I was allergic to the Asacol I had been taking for over 2 years that my condition finally set in to my brain. When I stopped the Asacol, despite how lousy I felt on it, life without it went into the crapper, literally! I am now making all the changes to my diet that I had been skirting for so long. I started keeping a food journal which is such a great tool that I'm angry that I didn't try it earlier, even though at least 5 health care professionals told me I should be keeping one. When I'm around family and we're going out to dinner, I assure everyone that they can get anything they want and don't worry about me, and then I end up getting soup or some non-threatening appetizer and drink water. I finally gave up soda and beer. That was traumatic in itself. I guess it took feeling lousy to make me realize that I was mostly responsible for how I felt. I just wonder if I'll forget all the lessons I've learned recently when I start feeling better again? I hope not, but if past behavior is a good predictor of future actions, I'll be in for a rough patch soon. Might as well start banging my head against a brick wall.
Brandon
 
Diagnosed w/ moderate UC in May '06, had symptoms for years prior to dx - currently flaring
Suffered from depression since I was 19
Taking Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, and fexofenadine for allergies


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/2/2008 8:35 AM (GMT -6)   
Beartooth, remember that other medications are also available to treat UC. I also was unable to tolerate Asacol; a fair number of us can't. You might consider exploring other options for getting the UC under control.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 9/2/2008 10:24 AM (GMT -6)   
Hi...what meds have you been on during this time??

welcome to the forum whyowhy.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 9/2/2008 11:25 AM (GMT -6)   
I don't think one course of pred is that big of a deal..... I mean, generally you'd start at 40-60mgs/day, stay there 2-4 weeks, then start to taper slowly. Ideally, you will be able to get off pred with no problems. You will feel GREAT! I think you only run into trouble with steroids when you become steroid dependent, or have to resort to them as the only med that will stop a flare. But if you can take one course of pred, & get your UC under control, then come off the steroids, I say go for it. I have no stats to back me up on this, but I believe that if you find yourself needing stronger drugs, like the biologics, to get off pred, you've most likely got a pretty severe case of UC (or pancolitis or Crohns) & you would need those drugs eventually anyway. Honestly, I've done 3 long courses of pred- the only time it really worked great was the first course. Side effects while on pred- insomnia, minor acne, a little bit of moon face (which no one could see but me!). Side effects after pred- horrible joint pain for a few months, & I do have minor osteopenia from the steroids, but I eat extra calcium to counteract it. I don't know...truth be told, I'm more concerned about long-term effects from the biologics & immune suppressants. When I remember how great I felt the first time I took pred..... if it always worked that well, Id've jumped on the steroid wagon a few more times!


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/2/2008 2:29 PM (GMT -6)   
Seems the prednisone is worth trying once at least, if you are suffering. You might be OK with it, although the side effects are uncomfortable. I have no permanent effects after 20 years of occasional use, and am still testing fine, like kidneys and also bone density.
49 year old female, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering off presnisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
 


Whyohwhy
New Member


Date Joined Aug 2008
Total Posts : 15
   Posted 9/3/2008 1:50 PM (GMT -6)   
Hey thanks so much everyone,

Well and update for you. I haven't taken the pred yet. But i DO think all the advice i got to take it and see how it goes is correct. I will start it today in fact. It's a tough balance of wnating to solve this naturally and not even starting on the "more drugs" road. But i realize i may have to do that anyways. CROSSing my fingers as i type,(wait I can't type like that,lol).
But dam I know once i take it ill be LUCKY if im only on it 2-3 months and LUCKY if i have a few (not what i consider minor) side effects. This is all assuming it will work for me. That is a tough road to start on, for me at least.
But the bottom line for me is, its going on 2 1/2 weeks now of severe symptoms and I don't think it's gettign any better. In fact it's probably getting a little worse. ANd this is on 4.8 g of asacol daily!
I'd love to try to cure this thing through diet, better living, etc but i know that takes time and i don't want to beat myself up inside any more than i already am.
The one thing that keeps stalling me, is my first flair like this that led to my dx was 6-7 weeks, somehow after the col. and dx, i was able to take care of this thing with 2.4 asacol, and rewasa sup. for a month.
I seem to feel better RIGHT after the col. Doctor was really surprised when i said i was feelign better already when i saw him 2 weeks later.
So many variables, so much confusion, Really drives an analytical person like me nuts.
God will take you through hell, just to make it to heaven.


mommaduck
Regular Member


Date Joined Aug 2008
Total Posts : 47
   Posted 9/4/2008 1:53 PM (GMT -6)   

Hello,whyohwhy, you just diagnosed my issue!

I am trying to help my husband into remission, and I get on here for ideas and advice. I feel the same confusion as you do....it must be the analytical personality!

We have looked into the natural ways to get there, and stay there. I have researched quite a bit, and we are currently trying the SCDiet. He is in the process of tapering off Pred. and it didn't help this major flare although it helped the last one (6/06) He has had many minor flares in between.

He is currently on Intestinew:L-Glutamine, N-Acetyl D Glucosamine and Gamma Oryzanol, ginger, marigold, marshmallow, and cranesbill. No yeast, wheat, corn, soy, gluten, salt, sugar, dairy, animal products, binders, fillers or artificial ingredients. Vegetable capsules.

He calls it a veggie garden in a capsule LOL although it's not.

 

There are so many variables for each person, that you are going to have to find out what works for you. I was overwhelmed with allthe ideas here, that I started keeping track of his history  and then reading through what others have tested and tried. Trying to compare this with this works, and that with taht probably won't - but set the thought aside as a possibility in the future.

 

The best thing to do right now, is get the flare under control and in the mean time keep a food journal. The journal will be a great resource of what will help and what won't as far as foods. 

 

To add to our confusion, they have dx him with CD but all tests are inconclusive. The more we research, the more we think it's UC. They are treating him both ways like they aren't really sure either, besides they both have similar treatments.

 

Hope to see you "better" soon.


m4dcks
Husband Diagnosed CD '06:
husband's:
secretary, cook, researcher, housekeeper, wife, nurse, comforter, etc.
and loving every minute of it!


maryd17
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 9/4/2008 3:04 PM (GMT -6)   
Hello, and sorry you are having troubles! It sounds like everything my Mom went through. She had colitis for years and turned into diverticulitis. She couldn't take the prednisone anymore due to the horrible side effects such as depression, terrible time sleeping, mood changes and the usual... I used to have terrible IBS. A couple of years ago we discovered an alternative medicine and it has cleared up the symptoms (knock on wood) and we are living a "normal" life again. This also helped me with migraines & anxiety as well.
This has been a blessing in our lives for sure. If anyone wants more info. please email me: mary (at) mmdickman (dot com) all 1 word lower case. I sure with we could put websites and info. on this but understand why we can't so, sure hope to hear from you.
Take care...KEEP THE FAITH!!!!!!!
Mary D

Whyohwhy
New Member


Date Joined Aug 2008
Total Posts : 15
   Posted 9/4/2008 11:50 PM (GMT -6)   
Momma duck your are an amazing wife to be doing that with him or for him. I thought it was a blessing to be alone in this(single, no kids,heck not even a dog), cause i would hate for anybody, my age especially, to have to put up living with me like this.
I just started my first Prednisone at 40 mg yesterday, feel it a little so far. I'm gonna be starting the CSD soon myself, just bought the book today, half off : )

The variables you mentioned are what drive me nuts. It's almost as though you can't treat IBD as a whole. it's beginning to seem ridiculous for any doctor or patient to take that approach. I dont care if its UC or CD. All the differnet levels and people, and lifestyles,etc, etc, etc.

I'm wondering if i should change career paths. Study the heck out of this subject and find a career involved in it, maybe write a book or become a dietician.
Cause The health community and UC, CD people need to be highly more educated on the individuality of this disease and thus the treatments. I'm Astounded at the lack of resources provided to me during all phases of this. Everything from disease knowledge, to medication programs, to support groups, to treatments, etc, etc. Here I am 16 months later and it took my getting very severe, to jump into this myself. And only because I have the time to do so (very blessed for that) without totally shattering my life. And because I believe that knowledge really is power, especially in this type of arena and have a intense interest in this now.
Maybe a non profit organization, we could publish packets of info and provide them to every GI office in the country, or even other countries, why not. I wonder if the drug companies would sponsor something like that.
This is all starting by me wanted to help myself, but it's been such an eye- opening experience, I feel if i have some success in healing myself or even just giving it my best shot to be healthy with this, I have got to share that with people and use it to help others. even if that help is nothing but info and support like we can do with each other on here. Thank god for the internet, i don't know how i would deal with this with out it.
God will take you through hell, just to make it to heaven.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/5/2008 9:57 AM (GMT -6)   
We could definitely use more dieticians who are familiar with this disease! When I've asked different ones for advice about low fiber diet, their eyes glaze over. They only know to recommend "low fat, high fiber" for everyone, which is useless. I've never been able to find a thinking dietician.
.
49 year old female, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering off presnisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
 

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