Sick and Tired of Prednisone!!

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champagnekindofgal
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Date Joined Jan 2010
Total Posts : 221
   Posted 1/29/2010 9:45 AM (GMT -7)   
Anyone want to complain about Prednisone?
 
I lost 25 pounds from Thanksgiving to NYE until hospitalized.  In the hospital, I was given IV steriods, sent home with 60mg prednisone and then two weeks later tapered to 55 gm which I'm still on  My GP is consulting with my GI to see if he can taper sooner.
 
I feel like a stuffed pig. I've gained all the weight bag, have a moon face, double chin, feel 'hyper', my eyes are irritated (from prednisone or crohn's?), have hard time falling asleep, neck pain, huge belly, lots of water weight.  I feel gross.
 
I can't afford Entecourt or I would switch .... ARGH!!!!  I started 50mg Imuran/6MP so I'll be on prednisone for 3 months.  I have a blind date tongiht and feel gross .... help!!
Diagnosed with Crohn's 2004 via pill camera    Imuran (6MP) kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - put back on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosis hemorrhoid.
 
 
 


grayeyedblonde
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Date Joined Jul 2008
Total Posts : 383
   Posted 1/29/2010 10:16 AM (GMT -7)   
I agree, Pred sucks! I gained over 50 lbs, (had given away all my 'fat' clothes from the last time I was on it) couldn't sleep, mood swings, irritability, ate constantly. The only upside was I felt like superwoman and my house was clean constantly!!! I cleaned walls, floorboards, ceiling fans, the fireplace, the garage and all the closets in the house! :)
Dx'd w/ Crohn's in 1979 at age 14, have had minor flares throughout the years, but mostly kept in remission. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. Was on Pred. Dr. wants to try Humira...
Currently just take a multivitamin, calcium, magnesium, and fish oil.


artist guy
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Date Joined Jan 2010
Total Posts : 1373
   Posted 1/29/2010 10:17 AM (GMT -7)   
I'm newly on imuran and pred. 50mg imuran and 20 pred. but i only use 15mg pred, so afraid of side effects and so far it's been only 5 days but just night swests, badly and tons on energy, I have been on sleeping meds for years but have had to increase those a notch. I can definatly see why riod's are a banned substance in sports, i feel so good today I'm off for a moutin bike ride. try to work off energy, day off anyway. i hope you get that dose down

artist guy


aronk
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Date Joined Jun 2006
Total Posts : 229
   Posted 1/29/2010 10:35 AM (GMT -7)   
Oh yes! I have a major love/hate relationship with prednisone. I LOVE the energy and like someone else said, my house has never been cleaner when I'm on pred. However, I get all of those same darn side effects and look terrible. I hate my face when I'm on pred and the night sweats suck too. Not too mention I'm almost mental while taking it.
Angela 
Crohn's Disease for 18 years.. 1st Resection June 2009 still having trouble-anastomostic leak and now fistula.  Currently on Flagyl, Entocort, and Imuran trying to get the drainage to stop. 
 


artist guy
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Date Joined Jan 2010
Total Posts : 1373
   Posted 1/29/2010 10:47 AM (GMT -7)   
do you think that the 15mg's of pred will cause side effects,i.e. moon face and weight gain? so far I haven't seen it but it's been onle 5 days, and how long before those things start to happen?

artist guy


champagnekindofgal
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Date Joined Jan 2010
Total Posts : 221
   Posted 1/29/2010 10:51 AM (GMT -7)   
The one thing advantage I keep thinking ... is that if the blind date goes well, and he likes me the way I am ... and then I lose my moon face when I go off the steroids ... then I can only look better, right? And he liked me for just me all along .. ha! Need some encouragement.

Yes, the night sweats too. I also have tooth pain too ... I forgot to metion that a bunch of my hair fell out before I was hospitalized as I couldn't eat for weeks on end and was throwing up bile (I was only drinking water at that point) for more than a week ... so it is starting to grow back. I have to part my hair very creatively tonight! Ha!

Crohn's sure brings out the resourcefulness!!! and Creativity we didn't know we had!! And not to mention empathy as I feel for all the rest of you ... but my house is not as clean. I've been looking for a job and a maniac on the computer!
Diagnosed with Crohn's 2004 via pill camera    Imuran (6MP) kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - put back on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosis hemorrhoid.
 
 
 


WriterMum
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Date Joined Apr 2009
Total Posts : 166
   Posted 1/30/2010 6:36 AM (GMT -7)   
I hope that your date went well last night. I'm sorry that I didn't see your post earlier. Today is the 3rd anniversary of MY blind date. We got married in May, while I was on Prednisone - moon face, bloated, night sweats, acne and all!! So if he is the one, it won't matter at all. Take care, and hopefully the flare will be over soon and you can get off the prednisone.
45 years old. Diagnosed with moderate to severe Crohn's in April 2005. Hiatus hernia diagnosed in 2008. Had Crohn's under control until March last year when I had a major flare up and ended up in hospital. Diagnosis is now CD and IBS. Getting it under control again.
Currently taking: Salofalk 2000 mg, Nexium, Calcium and Vitamin D, Matamucil, Yogurt for probiotics, Salofalk suppositories as needed.


Nanners
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Date Joined Apr 2005
Total Posts : 14995
   Posted 1/30/2010 8:10 AM (GMT -7)   
Yeeaahh WriterMum what a wonderful story. And you are so right, my husband and I got together in the worst years of my disease and he is an utter angel and true blessing.

As for the Pred, I consider it a necessary evil. Hate the side effects, but it does help to get me feeling better quickly. Champagne in the future don't let the doc put you on such a high dose. My personal opinion/experience is that 40 mg is a good starting point. I personally will not allow my GI to put me on more than 30 mg max to start. With 30 mg I don't get AS many side effects that I do on higher dosages and it still helps to quiet my flare down. But thats what I have learned in my many years of having this darn disease. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 1/30/2010 11:15 AM (GMT -7)   
Nanners - thanks for the advice about the dosage ... my GP has the same concerns. As I've not had this progression or this kind of acute flate, I'm learning. I also learned I can't drink any coffee while on prednisone. I don't usually drink any and did the other day ... I thought I was going to lose my mind ... I felt like a crack addict!

As for the blind date .. .it was a dud. He told me in detail while all four marriages didn't work ... and then proceeded to tell me about all his bi-polar meds he was on ... and how he had an emotional breakdown two months ago. A bit heavy for a first date. And now he has called three times this AM ... help!

But I have another date on Monday so maybe the might be the one ... I've met him before he is a hottie! I've learned too that obstaining from alcohol the night before keeps my face from swelling.

Thanks to all for your support .. you are awesome!
Diagnosed with Crohn's 2004 via pill camera    Imuran (6MP) kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - put back on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosis hemorrhoid.
 
 
 


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 1/30/2010 12:49 PM (GMT -7)   
champagnekindofgal said...
The one thing advantage I keep thinking ... is that if the blind date goes well, and he likes me the way I am ... and then I lose my moon face when I go off the steroids ... then I can only look better, right? And he liked me for just me all along .. ha! Need some encouragement.
Haha, that's great!  I was JUST thinking about how I am not going to go out tonight because there is no point, if I meet someone then I am going to have to explain I am in the middle of something and can't go out, etc etc, but after reading this I may just go out with my friends for a little while tonight. :)
 
I am on prednisone now - from a flare that was probably triggered by antibiotics in Nov - am also on Remicaide but got sick in Dec, was out of work for 2 weeks and just haven't gotten back to normal after that.  I am not sick like I have been before (bedridden, can't work, sleep all day, can't eat, etc) but I still have a lot of D with b and urgency.  My dr put me on 40mg of pred - I was feeling a little better and thought with the Remicaide I could start to taper myself down.  That didn't work and now I am STILL having symptoms and am on 40mg again.  Ugh. 
 
 
I am also trying to move toward a more holistic approach so am trying to do a macrobiotic diet and take lot of supplements.  I am trying to eliminate a lot from my diet and add things that might help heal me.  That and lots of praying, lots of yoga and working on my breathing exercises. :)
 
 
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
 
 


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 1/30/2010 2:08 PM (GMT -7)   
Your blind date sounds like a horror! At least you seem to have a sense of humor about it. I hope the one on Monday turns out better. I have a suggestion for you to help you feel better about the moon face. I've been on prednisone for way too many years and sometimes at way too high a dose, so I have been there, done that. (not the blind date part, but the moon face). You want to avoid anything that is high at the neck, it will just emphasize the moon face. Also you can contour under your cheek bones with a darker foundation to make your cheeks appear slimmer. You could go to a department store and ask one of the sales ladies for a make over before your date too. It might be just the confidence boost you need.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


LogSpoon
New Member


Date Joined Jan 2010
Total Posts : 5
   Posted 1/30/2010 3:58 PM (GMT -7)   
Pred definitely sucks!

After having to experience all of the terrible side-effects for 9 months, I was finally in remission and stopped taking it. Then, afterward, I started losing my hair! I did research and was told by the doctor that hair loss happens to a large percentage of patients after they stop taking it. The only thing I ever enjoyed while on Pred was that I no longer experienced the intense stomach pain.

Wren12
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 1/30/2010 4:07 PM (GMT -7)   
Oh how good to be able to vent. I've only been on Prednisone since November and am nearly of it now. At first I thought I would get away with no side affects but then it all went pear shaped. Major dizziness, racing heart (so bad I have to sit down), aching joints, oily skin, hair, moon face, weight gain, no sleep, vision problems and leg cramps. Luckily as I wean off though, the symptoms are going pretty quickly. I just wish the racing heart one would dissapear alot quicker.
Diagnosed with Crohn's in November 2009 but suffering since I was a child.
Currently weaning off Prednisone and just started Imuran


Wren12
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 1/30/2010 4:10 PM (GMT -7)   
ps hope the next date with the Hottie goes fabulously ;)
Diagnosed with Crohn's in November 2009 but suffering since I was a child.
Currently weaning off Prednisone and just started Imuran


champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 1/31/2010 12:34 AM (GMT -7)   
Thanks for all the tips (no high neck lines) and encouragement (yes, the hottie in the future, told the loser date no to the 'movie invitation') and most of all, the commisery ... prednisone sucks.

But I look at when prednsone was introduced commercially only in the 1960s ... can you imagine what it was like for those of our brothers and sisters suffering from an acute flare without this drug prior to this time? Having gotten out of the hospital less than a month ago, I just don't know how I would become functional without steriods ... yet I HATE them. Kind of like our relationships with parents! Ha.

Thanks to all ...

Liz
Diagnosed with Crohn's 2004 via pill camera    Imuran (6MP) kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - put back on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosis hemorrhoid.
 
 
 


GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 1/31/2010 1:26 AM (GMT -7)   
champagnekindofgal said...
But I look at when prednsone was introduced commercially only in the 1960s ... can you imagine what it was like for those of our brothers and sisters suffering from an acute flare without this drug prior to this time? Having gotten out of the hospital less than a month ago, I just don't know how I would become functional without steriods

Wow, I didn't know pred was that recent. I figured it was older, like dilaudid old. Maybe they gave patients other kinds of steroids. It is hard to imagine how Crohn's patients dealt back then. Pred is a necessary evil until the other vastly slower drugs can take effect. Without pred or the more recent drugs it seems like CD would easily and quickly get out of control.
Cimzia, Asacol


Grandpato2
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Date Joined Dec 2009
Total Posts : 681
   Posted 1/31/2010 4:28 PM (GMT -7)   
I so hated the moon face I grew a goatee( I know you can't) and it helped my face look slimmer. I was so tired of seeing my fat face in the mirror every day and the beard got lots of compliments too. Now I'm off the devils drug, lost 27 pounds and still have the goatee, I like it.


Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


Wren12
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 1/31/2010 4:35 PM (GMT -7)   
To be honest, I almost don't recognise myself now because of the moon face. It's strange and annoying. HOw long did it take after you stopped the prednisone for it to go away Grandpato?
Diagnosed with Crohn's in November 2009 but suffering since I was a child.
Currently weaning off Prednisone and just started Imuran


champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 1/31/2010 4:49 PM (GMT -7)   
I do not know my science, but looking up just steriods on Wikipedia (http://en.wikipedia.org/wiki/Steriod) and Prednisone being one of the most basic steriods, I would guess this was the oldest rx for auto immunie issues ... maybe someone else knows.

Kind wish I could grow a goatee now ...:)
Diagnosed with Crohn's 2004 via pill camera    Imuran (6MP) kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - put back on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosis hemorrhoid.
 
 
 


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 2/1/2010 8:42 AM (GMT -7)   
My mom was diagnosed in 1965 and was on prednisone from the start, at high doses. This was obviously before they knew the damage it could do to you. I look back at pictures of my childhood and we can practically tell from her face what dose she was taking!

Good luck with Mr Hottie tonight!
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Sarah_B
Regular Member


Date Joined Feb 2009
Total Posts : 82
   Posted 2/1/2010 2:37 PM (GMT -7)   
Don’t even get me started. I wouldn’t say I have a love/hate relationship with pred; it’s more of a hate/hate relationship. I will refuse up and down to take it. My GI has offered many times to put me on a moderate dose while switching medications and I would much rather deal with the pain. I’ll take fatigue and frequent bowel movements over prednisone any day.

Unfortunately, I didn’t have an option toward the end of last year when my uveitis flared and I went temporarily blind. I was put on 60 mg, which put me in remission for about two weeks. Two weeks of remission is not reward enough for all the crap I have dealt with for the past four months. Weight gain, moon face, double chin, buffalo hump, increased blood pressure, mood swings, thin skin, joint pain, facial hair, acne… Between the moon face, double chin, beer gut and buffalo hump, it’s a wonder I don’t fall over when I stand up.

I’m just starting on 6MP also, which means T minus three weeks before I’m allowed to start reducing again (and even then it will be very slowly). I’m also switching to Remicaide, so I’m keeping my fingers crossed that the two will be able to get me of prednisone.

Grandpato: With the amount of facial hair pred gave me, I wouldn’t have been surprised if I had grown a goatee (though, I’m guessing it wouldn’t have had the same effect on a woman). Also, congrats on the weight loss! I’ve been trying so hard to drop the pred weight, but I was still trying to get the weight off from my last prednisone episode when I started this one. But your success gives me a little hope.

And champagnekindofgal: Good luck with your date tonight!

22 years old, Female.
Diagnosed with Crohn's Ileocolitis November 2008.
Currently taking 6MP, 7.5 mg prednisone.
Hoping to start Remicaide soon.


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 2/1/2010 6:10 PM (GMT -7)   
I just hate pred. I had most of the symptoms they warn about and one that is rare. I developed steroid induced diabetes. I didn't have diabetes before I started pred but within 6 weeks I was always thirsty, peeing up a storm, eyesight went freaky. I ended up in the hospital because I had bone-marrow suppression from 6-mp and they told me I had diabetes. WHAT???? My BG was so high I was on several different injectible medications.

After I got off Pred my BG went back to almost normal. Even though I'm almost normal I'm still considered diabetic and I only have to take an extremely low dose of diabetes medication and no more injections.
Vicky / 49 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (28) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor, Lisinopril


champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 2/2/2010 8:43 AM (GMT -7)   
Just an update: had a three hour coffee date with the 35-year-old hottie!! I'm a 44-year-old gal so I was a bit shy about the age differene. Turns out he went to school with my baby brother! Anyway, we are going out on Friday night! So, who knows, maybe we will be just friends, but a good ego boost. I styled my hair, parting it the side as my face is more swollen on one side so my shoulder length hair swooped down over my chin on one side. Viola! Hip hugger jeans are forgiving as a velour jacket can hide the little belly I've developed ... thanks for all your support!
Diagnosed with Crohn's 2004 via pill camera    Imuran (6MP) kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - put back on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosis hemorrhoid.
 
 
 


LogSpoon
New Member


Date Joined Jan 2010
Total Posts : 5
   Posted 2/2/2010 8:45 AM (GMT -7)   
This was my DRAMATIC transformation process with Prednisone. It's pretty intense! I'm currently working out the drug still, but I'm almost back to where I was two years ago!


champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 2/2/2010 9:24 AM (GMT -7)   
You are still a cutie in each picture, however. We ae always more self critical of ourselves, aren't we?
Diagnosed with Crohn's 2004 via pill camera    Imuran (6MP) kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - put back on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosis hemorrhoid.
 
 
 

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