I am refusing prednisone

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Crybaybee
Regular Member


Date Joined Oct 2008
Total Posts : 29
   Posted 10/28/2008 6:57 AM (GMT -7)   
And I am worried that I am going to pay for it.  I'm just so scared of it.  I'm a hypochondriac anyway and I know that I will get all of the side effects with it and drive myself crazy.  I already have anxiety and panic attacks and I have read that it makes it worse.  I really don't want to take something that will make me more crazy than I already am!  Or elevate my blood sugar.  They gave it to me in the ER (didn't know they did, found out later it was 80mg) and then took my blood.  My WBC was through the roof and my blood sugar was too.
 
I'm not in terrible pain.  It mostly feels musoskeletal.  Almost like my stomach muscles are constantly tense and my back is really sore.
 
I was in the hospital for 4 days with ileus and gastritis.  I was given pred unbeknownst to me and I couldn't understand why I felt so flushed and hot and my ears were swollen up so much that I couldn't even bend them with my finger and they hurt and burned.  When I found out what they gave me, I told them to not give it to me anymore and I refused it the last three days I was there.  The ileus subsided and the DR (who didn't even bother to come talk to me) discharged me with a script 10mg 3/day for a week then 10mg 2/day for a week and then one a day until gone (total 60 pills).  That was last Thurs. and I haven't filled it.
 
I'm taking Flagyl and Cipro and having BM's.  Nothing to write home about but not watery (crossing fingers).
 
I quit taking my Pentasa since all of this started and would really like to go back on it but I am afraid that it will clog my small intestine up.  I'm so paranoid that I won't eat much at a time because I feel like if I am clogged up, a little food should be able to get through better than a reg meal.  I gorged myself the day I ended up in the ER and had to have my stomach pumped... never again!
 
So does anyone know what would have caused the ileus?  Inflammation?  I didn't get any answers.  I didn't even know it was ileus until I went to the hospital and got my records.  And I am still confused as to what it is and how to prevent it.  I feel like a ticking time bomb and every like ache and pain is freaking me out.
 
Sorry to write a novel.  I'm just a mess. 

TeacherBetsy
Regular Member


Date Joined Mar 2006
Total Posts : 310
   Posted 10/28/2008 7:10 AM (GMT -7)   
WOW... 80 mg? No wonder you felt so awful.

I don't blame you for not wanting to take the pred, and it is good to avoid it if you can. When I was on pred, I had lots of trouble with salt/fluid retention and went to talk to a nutritionist. She gave me some info about low-sodium diets and other options that applied to my situation. I had a lot of trouble with low blood sugar as well and was able to get help through the nutritionist and a Crohn's support group.

It really sounds like you might be helped by talking to someone about dietary options and anxiety management. I had panic attacks the whole time that I was on pred. It's not easy to manage, but there are some things you can try like breathing exercises and talking to others about how you are feeling. Dietary changes can help, too, especially avoiding sugar and caffeine and finding a way to get plenty of protein without overdoing your meals/eating so much that you feel sick.

Crybaybee
Regular Member


Date Joined Oct 2008
Total Posts : 29
   Posted 10/28/2008 7:19 AM (GMT -7)   
Thank you so much for your reply.
 
I agree that I need to talk to someone about diet.  I would eat dirt if I knew that everything would be okay. tongue
 
Do you think 80mg to nothing messed me up?  Aren't you supposed to taper off or is that if you've taken it for a week or so?

TeacherBetsy
Regular Member


Date Joined Mar 2006
Total Posts : 310
   Posted 10/28/2008 8:45 AM (GMT -7)   
When I first started with pred, my doc tried to increase the dose gradually until we got to 40 mg. I couldn't tolerate that and had to taper back down to 20 mg. Even at 20 mg, I had tons of side effects, many of which did not subside for good until I got off pred completely. Others here may be able to say more about taking a high dose, but 80 mg sounds like a lot to me and I wouldn't be surprised if it made you feel out of sorts. Prednisone is a powerful drug that is not to be taken lightly.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/28/2008 8:57 AM (GMT -7)   
I was on 80mg a day for three years. I was fine, but everyone is different. Please find a doctor that you can trust, so you can be treated. Because not being under a doctors care is not a place you want to find yourself with this disease. Anxiety and irritation is very common on pred.
Right now do soft foods (soup/jello/etc) until you feel better and are getting treated.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


TeacherBetsy
Regular Member


Date Joined Mar 2006
Total Posts : 310
   Posted 10/28/2008 11:21 AM (GMT -7)   
Yes, that's really true... everyone is different... I've read that some people do well with prednisone therapy. And I totally agree that you do not want to manage this disease without a doctor's supervision... make sure that you get the help you need and keep us posted.

jill in ca
New Member


Date Joined Oct 2008
Total Posts : 19
   Posted 10/28/2008 11:37 AM (GMT -7)   
First of all, I would recomend shopping new GI doctors!  If they won't even see you in the hospital something is wrong.  My dr arrives shortly after I do, when I am in the hospital.  You have to be careful with changing your meds without your dr knowing.  Steriods can have serious side effects when you do you not taper them.  more so than the side effects of the steriod itself.  It seems alot of things can cause the inflammation and also nothing at all. Thats the frustrating part.  I interviewed 6 doctors when I decided to switch.  It takes alot of time but it was worth it.  I wouldn't recommend winging it or you could end up in the hospital again. 

Diagnosed with CD in 2004.  Currently taking Pentasa, Entocort, probiotics, fish oil, ultra inflamx powder.  Dairy and wheat free diet.  Only struggling now with fevers, everyday!


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 10/28/2008 12:14 PM (GMT -7)   
I felt the same way about going on pred. I dreaded the day they said I needed it, but I felt really great on it. Took all my symptoms away, took the flare away, I had so much energy! I felt like I did 10 years ago when before this all started for me. Yes, the eating everything in sight stunk, and so did the 15 pounds I put on. Luckily those were the only side effects I had though. Tapering wasn't fun, and I had to go back up once, and go on a slower taper.

I would go on it again in heart beat if I needed to again. The idea of getting worse, and ending up in the hospital with maybe even worse complications is scarier to me then the pred any day!


~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Taking Asacol, Questran, Toprol XL (for high blood pressure). Tapered off prednisone a month ago!


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 10/28/2008 1:14 PM (GMT -7)   

I was recently on 80 mg of prednisone a day for two weeks for Scleritis.  Anyhow I am really hoping this in the last time I have to be on it!

80 is the highest I have ever been on this drug and I could not sleep at night, I would lay down and all I could hear was my heart beating loudly and quickly.  My moods were just awful--I cried at work, I had a really bad attititude and I was pretty depressed.  I also became paranoid and stressed over things I usually wouldn't.

I am now down to 25 mg a day and tapering.  If my eye flares back up, I am going to see about having the steriod injected directly into my eye, because I just cannot take the prednisone any longer.  I have been on and off (more on) this drug for nearly a year now and the side effects are just awful! 

On the flip side though, the drug worked very fast at clearing up my eye and getting rid of the pain.  It is just unfortunate that something that can do this has so many negative effects as well.

It is awful the doctor wouldn't even come and see you while you were in the hospital. 

Sometimes I wish this disease would affect something other than my eyes...joints, something else!  The eye pain is so unbearable when it gets bad and that is when I really forget about all the bad stuff from the pred. 

Best of luck to you and I hope you feel better soon!  Pentasa has worked for me, as far as the GI tract goes.


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 10/28/2008 1:59 PM (GMT -7)   
I refused Pred too. And when I go in and the first thing they suggest is Pred, I just flat out say I won't take it ever again! I have been on the South beach diet for 9 weeks and my crohn's (bowel movements) are better. I dont' do dairy, nuts, sugars. Get well! Oh and I always felt awful on flagyl

Crybaybee
Regular Member


Date Joined Oct 2008
Total Posts : 29
   Posted 10/28/2008 2:42 PM (GMT -7)   
I'm telling you that I am totally losing it because seeing all of your replies meant so much to me that I cried.  I have been crying at the drop of the hat since I left the hospital and I hardly ever cry, so I don't know what is going on.  I think they must of added some serious crybaby emotions in those iv bags! eyes
 
I have just read such horrible things about pred. that I want to talk to another DR before I totally decide that I will try it.  I don't feel as bad as I did.  I have some stomach pain, but it's weird like a pulled muscle or something and it's always in my upper left quadrant.  I don't even know what organ is there.  I'm thinking it's either my stomach or my colon.  I just want to get an xray and stick my finger right at that spot so someone will get a good look there and tell me what it is.  I also have a fair amount of back pain.  It seems to get better if I lie flat on the bed w/no pillow.
 
My doctor came in once after I was admitted.  And he did an endoscopy and that was it.  He didn't discuss the findings with me or have anything to do with me after that.  I was totally coherent for the whole thing.  I am immune to the Versed that they give you during that, so it wasn't like I was loopy.  He has no bedside manner and there is a language barrier because he is hard to understand and I feel like he doesn't understand me when I talk.  I waited all day to be released from the hospital and the only person I had to ask questions to was the nurse discharging me.  I live in a small town and my choices are pretty small as far as gastroenterologists go, but I will travel if I have to because I don't feel right about the one I have.  I am going to a new GP soon.  I decided to go to a DO and not an MD. I am hoping for someone who won't just barely talk to me and write me a prescription. 
 
about the SB diet... can a vegetarian go on one?  I've been a vegetarian for 16 years.  Sometimes I wonder if being one caused all of my problems, but I can't ever see myself going back.
 
I started back on my Pentasa but I only took one pill, so I might as well not bothered.  You guys know how big those things are.  I just keep picturing it clogging up in my duodenum.  My Crohn's is mainly in my small intestine, so I even wonder if Pentasa is right for me?  Their website's video says it goes to the duodenum, jejunum and ileum, so I would think it would be okay for a Crohn's patient to take, right?
 

basil
Regular Member


Date Joined Oct 2008
Total Posts : 78
   Posted 10/28/2008 5:38 PM (GMT -7)   
Hi Crybaybee,
I can totally understand-- I'm currently refusing prednisone too. My GI wants me to start it but I said, no way! I don't feel my symptoms are severe enough that I'm willing to try a drug with such major side effects. If I get worse i'll consider it, but for now i'm hoping that changing my diet and colazal will help.
It's so important to have a doctor you feel comfortable with and can trust, so you might want to consider trying another, even if it means a drive.
Hope you feel better!

Momikins
Regular Member


Date Joined Oct 2007
Total Posts : 77
   Posted 11/2/2008 10:54 PM (GMT -7)   

So, far I've been able to stay away from Prednisone despite my GI saying that he would just put me on it for 2 weeks.

My Dad was recently diagnosed with Temperal Arteritis which is inflamation of the arteries that lead to the brain.  In order to avoid going blind and/or having a stroke he has to be on Prednisone for a minimum of one year.  It is the only treatment for this rare disease.  Within two weeks of starting the prednisone he became diabetic.  Within a few months he had developed a heart problem and clots in his lungs and legs.  he had to start on Cumadin (a blood thinner).  Recently, he perforated his colon and had to have an emergency partial colectomy.  He is in ICU and just had the respirator taken off today.  He has Paritinits from the infection caused by the intestinal perforation.  Basically, he is going through hell.  And everything that has happened to him has been a sort of domino effect from the Prednisone.

So, yes, avoid prednisone as long as you can.  But, keep in mind that sometimes it is a neccesity.  My Dad didn't want to go on it but if he hadn't he would have most likely had a stroke by now.  

My GI was honest with me from the beginning and told me that if I went on Prednisone I would most likely develope diabetes based on my family's history.  Thank heavens for an honest doc!  It hasn't stopped him, however, from suggesting a short term, 2 week, dose of it.  I, personally, will have to be doubled over in pain and rushed to the emergency room and told that nothing else will help me before I go on prednisone.

 


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 11/3/2008 11:30 AM (GMT -7)   
You might want to consider Entocort. It's also a steroid drug, but with much fewer side effects. Unfortunately, a lot more expensive too.
Crohn's since 1988
3 resections


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/3/2008 1:45 PM (GMT -7)   
Ileus is an obstruction either mechanicl or from disease or stricture. Did the Dr. tell you what is causing it? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


SallyC
Regular Member


Date Joined Nov 2004
Total Posts : 158
   Posted 11/4/2008 5:21 PM (GMT -7)   

Hey!

I too begged not to be on predinsone with this last flare and if we could please please try something else. Lucky for me the colonoscopy revealed inflammation from the rectum and a straight pattern up not to high (will find out how high tomorrow). He said it looked again like I had UC. So he put me on canasa, cortifoam enemas and entocort. I was feeling awesome in less than a week.

Entocort is expensive and we had to pay $75 co pay but it was worth every penny to not have to go on predinsone.

Best of luck to you and in the end if it gets to bad you may just have to bite the bullet and take the darn stuff.

Sally


Sally
 
Diagnosed with UC in July of 2003 then diagnosed with Crohns in August of 2006.


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 12/15/2009 8:11 AM (GMT -7)   
I am switching back to my old GI dr - I love everything about him except that he likes to put me on prednisone - my current dr thinks it does more harm than good so I feel justified in refusing it. If I get very sick and that is the only course of action then obviously I will take it but the side effects are terrible - it is like a poison in your body - it does calm the inflammation but wreaks havoc with the rest of you.

Plus the bone density tests I had show osteopenia and osteoporosis in some areas - it runs in my family but after the prednisone it was worse - I only have so many more years to build bone mass, or at least stop it from declining, and prednisone is terrible for that.
32 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9 and Vitamin D
 
 


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 12/15/2009 7:25 PM (GMT -7)   
I was on 80mg / day in the hospital and hated it ... but sometimes the pred is a necessary evil (I prefer to use it for less than 5 days if possible.) I guess it depends on your situation. For example, if the doctor is using it to stave off an emergency surgery then it might make sense. Sometimes they like to cool you off for a few weeks, taper you off the pred, and then go in to operate. That's what they are doing with me right now, except I am using Entocort instead of prednisone.

+ 34 year old male
+ Crohn's Disease DX in 1997
+ Recently hospitalized because of ruptured small bowel; docs got it under control but have scheduled resection surgery for January 2010.
+ Taking Cipro (1000mg / day), Flagyl (1500mg / day), and Entocort (9mg / day) until surgery
+ SCD for past 10 years


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 12/15/2009 7:39 PM (GMT -7)   
I also refused Pred, although I probably shouldn't have. I've been on Entocort for 9 months now. It's a lot more expensive but worth a shot. It doesn't work as fast as pred, and depending on the severity, it may not be enough. It hasn't been enough for me but I'm not going near pred unless I absolutely have to.

annod
Veteran Member


Date Joined Apr 2004
Total Posts : 1052
   Posted 12/16/2009 9:08 PM (GMT -7)   
I refused pred also, I could not bear thinking about the side effects never mind living them. I did go on entocort successfully and along with methotrexate I eventually went into remission. The muscular pains are common as your body will do what it takes to protect an inflammed area (guts etc) When my intestines or esophagus/stomach are inflammed the muscles around all get tense and very sore.
I have health related anxiety, a normally high heart rate with periods of bad palpatations and osteopenia...those are not a good mixture with pred lol
Donna


JAB
Regular Member


Date Joined Nov 2003
Total Posts : 351
   Posted 12/17/2009 4:30 AM (GMT -7)   
Hi-
When I was first diagnosed with Crohns I was in pretty bad shape and they suggested pred. Not knowing exactly what it was and having the desire to feel better I took it. At first it gave me my life back, I was taking 40mg. It helped me tremendously and I thought it was the wonder drug. Over the years I went on and off it with less desirable effectiveness and some side effects.
I finally came to the conclusion that pred is a double edged sword which ultimately will bite back. The last time I was prescribed it I almost broke down and cried. Needless to say I didn't go back on it. I went on Entocort instead which is still a steroid but more of a localized steroid that didn't have the same obvious side effects.
I'm not too happy about the Entocort but long story short, prednisone was good to me in the short run.

They don't call it The Evil Pred for no reason.

Hope you feel better and find the right treatment for you.
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 11, 2016 5:07 AM (GMT -7)
There are a total of 2,736,273 posts in 301,365 threads.
View Active Threads


Who's Online
This forum has 151457 registered members. Please welcome our newest member, jim1909.
151 Guest(s), 3 Registered Member(s) are currently online.  Details
hypoHashimoto, ceecee600, Jozuck12


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer