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unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 12/21/2008 9:54 PM (GMT -6)   
Curious about the side effects you all have had from predisone. I'll tell ya mine... then if ya all will fill me in on yours and your thoughts on mine....??
Number 1 side effect.... I actually lose weight. about 1-2 pounds a week. I think its the insomnia and extra energy I get from this stuff.  Just noticed today.... am gettin a puffy face. but still no weight gain.
Number 2... starved all the time.
Number  3... stretch marks on my bely that were never there.... From swelling and puffyness I miised?
Number 4.... and don't laugh... Lack of sex drive? HAve always been a very sexual person, and now it seems I have no drive. Not that it doesn't interest me or that me stuff don't work.... Just have No drive to pursue it. Is this normal?
Number 5.... insomnia?
Number 6... and this is a "good" one. I actually don't hurt anymore. I used to suffer gout, and bad Arthitis.  seems to be totatlly gone on this drug.
Please let me know about your side effects and your thoughts on mine..... Like I have said in other posts, am still in my intial flare ( 14+ months ) (feel I'm gettin better though ) And just tryin to learn how to live and cope with this horrid disease.
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 12/21/2008 10:09 PM (GMT -6)   
     Insomnia is my #1 side effect from prednisone.  High blood pressure too.  It can raise the blood pressure and blood sugar.  I also lose weight while on prednisone but don't know whether this is due to the prednisone because while flaring I really have to watch what I eat and have diarrhea.  I guess it is a combination.  Sex drive...eh...since going through the change of life I don't have much sex drive to start with..lol.  Prednisone gave me osteoporosis too.
     Of course you stop hurting while on it, it's an anti-inflamatory drug.  It clears up inflamation in your system but it also plays havoc on your organs.  Like I mentioned in former posts, my GI doctor calls it the best/worse drug.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 12/21/2008 10:34 PM (GMT -6)   
1.) Anger management, short temper, mood swings...
2.) Insomnia
3.) Slight decrease in sex drive
4.) Feeling of being extremely geeked on caffiene....refer to #2.

One good thing I guess is that I do feel a little euphoric at times....but at the same time I can flip my lid almost for no reason....

I have had some arthritis issues - very minor....never a hint of pain while on pred. However there are sideeffects we dont feel that are the ones that are far worse - weakening of bones, etc... I have read it can even cause cushings....I have had some endocrine issues before - possibly from pred? who knows what causes what at this point.....been at this a while....

Nonetheless - it has gotten me out of some harsh flares....and I am on 40mg again because of this past flare....so, without alternative (cant take Remicade - still checking on Immuran) - I will take what I can get I suppose.
34 yr old male. UC for 14 years. 40mg pred (as of 12/16/08), 12 pills Asacol per day, 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!) "I poop in the woods because I can"


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 12/21/2008 11:40 PM (GMT -6)   
I take it in morning so it doesn't mess up my sleep.
It has raised my BP.
It makes me moody as hell, grouchy. Stuff I have to really just watch out for and be aware of.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/21/2008 11:45 PM (GMT -6)   
Yup, about the only side effect you can control on pred is the insomnia, taking it first thing in the early am will work for insomnia.

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


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 12/22/2008 1:03 AM (GMT -6)   

My daughter's side effects were:

1. Puffy face
2. Weight gain (45 lbs this last time which she lost since surgery)
3. Irritability (but she is a teenager so who knows smilewinkgrin )
4. Munchies


--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Asia
Regular Member


Date Joined Aug 2005
Total Posts : 188
   Posted 12/22/2008 2:55 AM (GMT -6)   
1) Moon face
2) Gained 30lbs in two weeks (came off after stopping)
3) Severe mood swings--either super happy, sad, mad. I would be serving customers at work with tears streaming.
4) Insomnia--and I DID take them in the morning.
5) Stretch marks all over my legs and my arms. So you're not alone.
6) Severe and violent leg twitches and shakes while tapering (I had to take medical leave)
7) Headaches
8) Red Face
9) Acne

..the list goes on
..and it never really helped me

My God, pred was awful. NEVER again unless I'm dying.

Suffered for my whole life before being diagnosed.

Told to "Eat more fibre "



Currently on:

Salofalk
1500mg x 4/day
Entocort 6mg once a day Completely off as of 10/21/08. Took 2 years!
Imuran 150mg once a day


tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 12/22/2008 6:58 AM (GMT -6)   

1. Osteopenia

2. Never have to get up and wee through the night but when taking prednisolone I do.

3. Moon Face

4. Acne

5. Lots of energy

6. A little weight gain but nothing really, has been more in the past but now I watch what I eat   when taking them, however I do feel like I am starving all the time.

7. Hyper sensitive, become emotional, angry, elated.  Moods are very up and down.

 

 


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


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 12/22/2008 8:04 AM (GMT -6)   
Moonface is the worst side effect for me, it's bad enough having this disease but then looking like a freak with a big face is really depressing for me.

When I'm on it for too long, my legs almost stop working. I can hardly climb stairs and I have to use my arms to help pull myself up the stairs.

When tapering, I sometimes get really bad knee pain, it's excruciating!

I get a little insomnia but I split my dose up to 4 times a day and it really helps.

Munchies, I want to eat ALL the time!
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 12/22/2008 9:35 AM (GMT -6)   
Glamourgirl - I forgot about the knee pain!! Years ago I worked for a company and we flew into Chicago & went to the pier... Walking around the pier was excruciating! I literally felt 80 years old and I was 25 at the time....couldnt keep up with anyone....it is making my legs hurt now thinking about it actually.....legs were like jelly at times! It was during a bad flare and tapering off pred after being on for a very long time.....not a good feeling at all....
34 yr old male. UC for 14 years. 40mg pred (as of 12/16/08), 12 pills Asacol per day, 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!) "I poop in the woods because I can"


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 12/22/2008 2:48 PM (GMT -6)   
I was on Prednisone once for three months. I was put on 40 mgs. Most of the time I was on 25 mgs. Here are the side effects I got:

1) Weight gain
2) Moon face
3) Muscle spasms
4) Teeth hurt when I drank cold beverages
5) Cracking/popping joints
6) Irregular heartbeat
Joy - 47 yrs and counting

Diagnosed w/ UC Dec 06

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

Lexapro (for stress)
Probiotics (orally and up the but)
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 12/22/2008 3:07 PM (GMT -6)   
hey there's another one I guess I have. Teeth hurt when drinkin cold beverages. wondered what was going on. LOL. never associated it with the pred though. It was 2 degrees here this morning, my teeth actually hurt just breathin the air.
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten


Asia
Regular Member


Date Joined Aug 2005
Total Posts : 188
   Posted 12/22/2008 4:13 PM (GMT -6)   
unclebubba said...
hey there's another one I guess I have. Teeth hurt when drinkin cold beverages. wondered what was going on. LOL. never associated it with the pred though. It was 2 degrees here this morning, my teeth actually hurt just breathin the air.


Actually, a few months ago while tapering off Entocort I had the same problem. Not necessarily from cold drinks/food. It was more like random tooth pain. Usually the front teeth.

Suffered for my whole life before being diagnosed.

Told to "Eat more fibre "



Currently on:

Salofalk
1500mg x 4/day
Entocort 6mg once a day Completely off as of 10/21/08. Took 2 years!
Imuran 150mg once a day


kitkatpd
New Member


Date Joined Dec 2008
Total Posts : 2
   Posted 12/22/2008 8:04 PM (GMT -6)   
First time posting...Prednisone is horrible! I developed Cushing's Syndrome from it (occurs when the body can't process all the cortisol properly)- my list includes:

1. Moon face
2. Buffalo Hump (fat/water between shoulder blades - for a while I could only wear shirts that were REALLY stretchy because I couldn't lift my arms above and behind my head...or have my finace take my tops off like a little kid!)
3. Insatiable hunger which led to weight gain - about 35-40 pounds within a month and a half
4. Super fast and irregular heartbeat - usually a resting rate of 100 bpm
5. Horrible stretch marks that were not there one day, but within a time span of 2-3 days my body just exploded with these bright purple/red stria - big thick ones around my abdomen/hips/thighs and regular (but still hideous) ones down to just below my knees/around my breasts/underarms/upper arms
6. Burnt feeling on my tongue and food didn't taste right.

The only good thing was that it too gave me relief from my UC related arthritis. I was only on 40 mg Prednisone and tapered by 5 mg every week - and each week after the taper, the bleeding would return for a few days. When I was down to 5 mg and tried to stop, the flare came and never stopped. Now back on 5 mg maintenance until I get started on Remicade (Woo hoo!), and the weight is starting to come off pretty fast, but it sucks that I'm getting married in June and these stretch marks will still be quite visible...I'm slathering myself with pure unrefined Shea Butter like crazy! Oh well...c'est la vie!

sunshine82
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 12/22/2008 11:42 PM (GMT -6)   
hmm where do I even start, I think I've had every single side effect while on prednisone except for Insomnia, I have been on it since August at 50mg, but I am now down to 5mg, here is the list of the worst side effects:

1) Moon face, double or triple chin, fat neck
2) I think I had a bit of a buffalo hump - I couldnt lift my arms above or behind my head, I got stuck in my clothes!
3) Night sweats - I would drench my PJs, and I would want to sleep with the windows open in November!
4) Roid Rage
5) Knee pain - it was so bad some nights it would keep me awake, it felt like someone was grinding my bones together, it was terrible, I felt like I was 80, when I am 26
6) Weight gain - about 40 pounds, since I started to taper nothing has come off yet :( but I havent gained anything either.
7) Terrible Stretch marks on my stomach, underarms, breasts - so painful it felt like my skin was tearing, they are thick and long
8) Acne

novus99
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 12/23/2008 1:38 AM (GMT -6)   
Did anyone have a good experience with this drug??
What is 'moon face'?
Nothing else has been working for me and I meet with my GI tomorrow and I was planning on trying it..

unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 12/23/2008 8:21 AM (GMT -6)   
my good experience is that is definately helps my UC. Side effect are a pain and I can't wait to start my taper, but this drug really helps me.
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 12/23/2008 2:54 PM (GMT -6)   
novus99 said...
Did anyone have a good experience with this drug??
What is 'moon face'?
Nothing else has been working for me and I meet with my GI tomorrow and I was planning on trying it..
The last time I was on it, I was started on a moderate dose and was quickly tapered. Because I do so many other things to support my GI health, I believe I was able to reap the benefits and get off it before alot of the side effects kicked in. I basically had no obvious bad effects and it turned a mild flare off almost immediately, like flipping a switch. Made me wish I'd taken it sooner.
 
On the other hand, when I was first diagnosed, was extremely ill and hadn't yet learned of the other supportive things I could do to manage my UC, I was on a much higher dose of pred for much longer and did experience the various side effects: hunger, night sweats, increased energy, moon face and water rentention/fat gain around trunk.
 
There is a great book on managing pred side effects I frequently recommend:
 
Coping with Prednisone
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 12/23/2008 3:19 PM (GMT -6)   

My main side effects from pred were:

1. Puffy "moon face"
2. Mood swings and a horribly short temper
3. Elevated heart rate, up to 200+ bpm one time I checked, and that was the RESTING rate
4. Elevated sodium levels and decreased potassium levels, had to take potassium supplements and steer clear of salt for a while
5. Osteopenia
6. Horrible lower back and joint pain
7. Increased crazy appetite
8. Weight gain.. Up to 30lbs at one point, which would have been fine because I was seriously underweight, but it was SO unevenly distributed, mostly in my face and stomach/hips, with scrawny arms and legs
9. Horrible healing rates; cuts and bruises would take weeks to heal... One time I got a tattoo while on pred and it healed terribly so I had to have it touched up when I was off it.

I also get steroid dependent and once I'm on it, I can't get off.. Every time I try to taper I flare again terribly. So I refuse to take it anymore.


Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


SoCal-UC
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 12/24/2008 12:58 AM (GMT -6)   
Don't forget about 3 side effects that you can't see.

1) Cataracts
2) Acid Reflux
3) Bone loss

I have been on/off of the mother of all anti-inflammitories for 6.5 years (mostly on).
I am currently tapering at 7.5/10/7.5/10 MG and look forward to holding at 7.5, then
on to 7.5/5/7.5/5 MG with hopes of getting off of this Rx.

I went in for a bone scan last month and naturally have bone loss (minimal). My Endocrinologist
has put me on a weekly Vitamin D (50,000 IU) to help bring this to normal levels.

Off to the opthamologist next.

Good luck.

~ TSM
____________________________________
Male - 42, San Diego, CA
Diagnosed May 2002 with Ulcerative Colitis
Medications: 
Asacol = 400mg X 12
Prednisone = 25mg
Omeprazole = 20mg X 1
Lisinopril = 10mg X 1 (blood pressure)
Lomotil = 2.5mg X 3-4 (when flaring)
Calcium + D = X 1


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 12/24/2008 6:59 AM (GMT -6)   
This is the first time I've been on Pred; not for my Uc but for my arthritis. So I believe that many of you lost the joint pain is because apparently this is also used for things like that. I'm at a relatively low dose right now - 10mgs and I start tapering tomorrow. But in the past few days, insomnia has hit me again even with a sleep aid. But I noticed that I'm hungry all the time too. When I was on steroid enemas, these side effects hit me too but usually after I was on them for a month or so. I can't even imagine being at a higher dose! Lordy do I feel sympathy for anyone that has to do the higher doses!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers 
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