pred and side effects???

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lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 3/19/2009 11:12 AM (GMT -6)   
Hi all saw new GI yesturday and he has started me on 60mg pred as flare is bad have never been on it before and was wondering when if atall i would be getting side effects i know everyone is differant but 60mg is quite high to start with so i think i stand a good chance of getting some bit worried as to what will happen will start to tapper in 2wks just hope it works or will have to go into hospital sad just so fed up of feeling so rough all the time.
  
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started pentasa supps 1gm 26/6/08
 Asacol 800mg x2 twice daily
  Domperidone 10mg as needed
  co codamol 30/500 x2 when needed


UCgoaway
Regular Member


Date Joined Feb 2009
Total Posts : 43
   Posted 3/19/2009 11:20 AM (GMT -6)   
I got the mood swings one week after starting.
Acne 6 weeks after starting.
Moon Face 6 weeks after starting.
Insomnia the whole time.
Massive amounts of energy the whole time.
John, 32, diagnosed Jan. 23, 2009
 
Current Regimen:
 
3 x 3 Colazal
Rowasa every 3 nights
30mg BuSpar for GAD
40mg Protonix
Forvia multivitamin
Align Probiotic
Turmeric, Boswellia, Fish Oil, and Milk Thistle (for my liver)
40, 30, 20, 10, 5mg Pred (tapering)


lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 3/19/2009 11:24 AM (GMT -6)   
could do with the energy but not the others thanks for your quick reply
  
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started pentasa supps 1gm 26/6/08
 Asacol 800mg x2 twice daily
  Domperidone 10mg as needed
  co codamol 30/500 x2 when needed


UCgoaway
Regular Member


Date Joined Feb 2009
Total Posts : 43
   Posted 3/19/2009 11:26 AM (GMT -6)   
The energy WAS great! But now since I've been off it...its back to the fatigue. I'm not loving this too much.

On a happier note, my acne and moon face are going away. The insomnia is still there though...it might not have been the pred.
John, 32, diagnosed Jan. 23, 2009
 
Current Regimen:
 
3 x 3 Colazal
Rowasa every 3 nights
30mg BuSpar for GAD
40mg Protonix
Forvia multivitamin
Align Probiotic
Turmeric, Boswellia, Fish Oil, and Milk Thistle (for my liver)
40, 30, 20, 10, 5mg Pred (tapering)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/19/2009 11:49 AM (GMT -6)   

I started at 40 mg. - now down to 20 mg.  I am very sensitive to all medications so had to start at 40.

I do have moonface after a couple weeks - down to 30 mg.  Lots of energy but that is waning since down now to 20 mg. for one more week and then 15.  Actually, feeling good - bleeding stopped after about 4 days.  Now back to some mixed with mucous but much better.  Started 6MP and waiting for that to kick in.  MUNCHIES - be prepared to want to eat everything in sight!!(like going to bed thinking about what is for breakfast)

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


UCgoaway
Regular Member


Date Joined Feb 2009
Total Posts : 43
   Posted 3/19/2009 12:07 PM (GMT -6)   
OH YEAH ELAINE...I forgot about that...I was soooo hungry...I felt like the cookie monster. I promptly gained back the 15lbs. I lost during my flare. I have far less of an appetite now.
John, 32, diagnosed Jan. 23, 2009
 
Current Regimen:
 
3 x 3 Colazal
Rowasa every 3 nights
30mg BuSpar for GAD
40mg Protonix
Forvia multivitamin
Align Probiotic
Turmeric, Boswellia, Fish Oil, and Milk Thistle (for my liver)
40, 30, 20, 10, 5mg Pred (tapering)


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/19/2009 1:08 PM (GMT -6)   
I have to agree here too, really feeling hungry this time around on Prednison and also first time for having insomnia even after taking Ambien.
kops2da said...

I started at 40 mg. - now down to 20 mg.  I am very sensitive to all medications so had to start at 40.

I do have moonface after a couple weeks - down to 30 mg.  Lots of energy but that is waning since down now to 20 mg. for one more week and then 15.  Actually, feeling good - bleeding stopped after about 4 days.  Now back to some mixed with mucous but much better.  Started 6MP and waiting for that to kick in.  MUNCHIES - be prepared to want to eat everything in sight!!(like going to bed thinking about what is for breakfast)

ElaineNY



mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/19/2009 1:11 PM (GMT -6)   
Hi, I am taking Prednisone and have been on it before.  Symptoms seem different this time around.  I am on 30 mg right now.  This time, I am experiencing insomnia and hunger.  Last time I don't recall this, I do know the last time when I took two courses of it back to back, I really felt like a basketcase with emotions...I did not like it.  Right now, not too bad except those things I mentioned...good luck with the medication.  Hope you get better real soon...
lambkins said...
Hi all saw new GI yesturday and he has started me on 60mg pred as flare is bad have never been on it before and was wondering when if atall i would be getting side effects i know everyone is differant but 60mg is quite high to start with so i think i stand a good chance of getting some bit worried as to what will happen will start to tapper in 2wks just hope it works or will have to go into hospital sad just so fed up of feeling so rough all the time.


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 3/19/2009 1:59 PM (GMT -6)   
I've been on 40mg for about a month n a half..... i feel like screaming I CANT STOP EATING AHHHHHHHHHHHHHHHHHHHHHHHHH
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/19/2009 2:19 PM (GMT -6)   

You know I never got the problem until I got down to 20 mg.

As I sit here eating rice pudding between typing LOL!!  Hang in there - at least I bet you are not already 80 lbs. overweight like I am.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/19/2009 2:28 PM (GMT -6)   
HI, I know totally how you feel.  I have had this disease 40 years and started in my teens....talk about so sickkkkkk of it.  Hang in there I went to a talk recently who said a lot of time UC can get itself better in time and almost wears itself away.  I don't know how true that is, for me it wasn't but maybe I was one of the few who this wasn't the case for.  I so do hope things get better real soon...let's just hope they will.
sweetmelody said...
I've been on 40mg for about a month n a half..... i feel like screaming I CANT STOP EATING AHHHHHHHHHHHHHHHHHHHHHHHHH


Scarlet504
Regular Member


Date Joined Oct 2008
Total Posts : 192
   Posted 3/19/2009 2:32 PM (GMT -6)   

I've been on Pred for a total of around three months. Started out at 40 mg and tapered 5 mg every week. I stayed the longest on 40 mg and while tapering on 15 mg because of worsening. All in all, Pred didn't help me at all with UC and that is why I say: Never again! I tapered it off, although I had almost most symptoms as when I started Pred. I didn't want to be on this drug in vain and we all know, Pred is a bit stronger than a handful of blue M&Ms ... .

Unpleasant side-effects I had include insomnia, anxiety, panic attacks, feeling shaky and weak, crying spells for minor reasons (or no reason at all), anger/fury/bad temper, feeling loopy and unreal most of the time. The only good thing was that I had beautiful facial skin - baby soft and not a single blemish on it. I was coughing a lot too and I think that was caused by the taste of the Pred pill. Sometimes it swam around in my mouth and I couldn't swallow it fast enough, so that yucky taste of that pill made me cough all day. I don't think that's a side-effect though. It was just me being inept to down it fast enough. My bad.

I didn't have the munchies at all and didn't gain weight. I lost my apetite on Pred, so there is hope for you - if you are worried about the munchies, that is tongue .


Scarlett, 38 yo., TX
Pancolitis since 3/1997
Meds
6 x Asacol a day
75 50 mg 6-MP
Align (probiotic)
Flintstones Complete Vitamins


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/19/2009 2:33 PM (GMT -6)   
Sweetmelody,

I have to say even though having UC for so many years it's just been lately that it's really come to trying to get things a lot better instead of living with it the way I was because that was what I was used to. So what I am trying to say is that for the most part throughout all these years there were some really okay times in there where it got to be very manageable, try to hang in there I know how difficult that is, but things may and hopefully turn around for you soon.

lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 3/19/2009 2:34 PM (GMT -6)   
At least i could blame biscuits and chocolate binges on meds might get away with it lol good job we can laugh just have to stock up on the munchies for when the insomnia kicks in
  
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started pentasa supps 1gm 26/6/08
 Asacol 800mg x2 twice daily
  Domperidone 10mg as needed
  co codamol 30/500 x2 when needed


fargman
Regular Member


Date Joined Dec 2008
Total Posts : 74
   Posted 3/19/2009 3:43 PM (GMT -6)   
The munchies, mood swings (anxiety), and my enormous face are what I'm dealing on 40mg.

I can't wait to get off this junk!!! At least the acne hasn't been a problem.
Diagnosed '93. 
 
Asacol, Prednisone, Remicade, Imuran
 


PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 3/19/2009 4:11 PM (GMT -6)   
I started pred today 40 mg a day for two weeks and then I will taper 5mg a week till I don't have to take it anymore. I am on mesavant also. I was wondering if this approx 2 months on pred will be long enough to have the whole water retention et moonface thing??.. I am a bit worried. I already suffer from anxiety I hope it won't make it worse....

And for the ppl who had the physical changes of cortisone, does it take a long time to go away once you're off the prednisone?

Thank you

Scarlet504
Regular Member


Date Joined Oct 2008
Total Posts : 192
   Posted 3/19/2009 5:03 PM (GMT -6)   
Oh, I forgot to mention that I had the moon face too. It gradually appeared in my case and I didn't wake up one morning, having a moon face all of a sudden. I am off Pred since 3 months now and to answer your question, Pink PaperClip: I still have remains of a moon face. It takes me so long to get rid of that. It doesn't have to be in your case. I never had problems with water retention. Totally restricting your salt intake does help a lot, because it is the sodium that makes you retain water. So use as little salt as possible and read food labels. There is a lot of sodium in stuff you would never dream there'd be.

Scarlett, 38 yo., TX
Pancolitis since 3/1997
Meds
6 x Asacol a day
75 50 mg 6-MP
Align (probiotic)
Flintstones Complete Vitamins


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 3/19/2009 5:50 PM (GMT -6)   
Scarlet504 said...

Unpleasant side-effects I had include insomnia, anxiety, panic attacks, feeling shaky and weak, crying spells for minor reasons (or no reason at all), anger/fury/bad temper, feeling loopy and unreal most of the time. The only good thing was that I had beautiful facial skin - baby soft and not a single blemish on it. I was coughing a lot too and I think that was caused by the taste of the Pred pill. Sometimes it swam around in my mouth and I couldn't swallow it fast enough, so that yucky taste of that pill made me cough all day. I don't think that's a side-effect though. It was just me being inept to down it fast enough. My bad.

Ah haaaa someone else whos experienced the shakiness, anxiety and weakness! I'm also very lightheaded when on my feet for longer than 45mins or so (not sure if related to Pred or just being unwell in general) I am experiencing this every day (currently just dropped down to 30mg Pred from 40mg.) I've also been feeling very emotional and irritable for minor reasons. My GP seems to think the lightheadedness/shakiness etc is unlikely all to be caused by the Pred but that is all she can put it down to as no other cause has shown up as yet. It all started when I was in hospital a couple of weeks ago on IV hydrocortisone, and then after 5 days put onto Pred. (Although I have experienced similar symptoms a couple of years ago but again not sure of the cause)
 
I'm glad to have found someone else with these random Pred side effects...how long did it take to wear off? And how much did it affect you day to day?

22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Hospitalised Fri 27th Feb for a week of IV Hydrocortisone.
  
Currently taking daily: 
30mg Prednisolone tablets (tapering)
5mg Prednisolone suppositories x 2
1g Mesalazine suppositories x 2 (soon to change to Acetarsol)
1g Mesalazine granules x 4
Fybogel supplement
Vitamin tablet
 
                             
                             


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/19/2009 5:56 PM (GMT -6)   
Pinkpaperclip

My friend I talked to about the J pouch, she highly recommended support groups so maybe there is one in your area. Here there is a Crohns and Colitis Foundation that you can contact and they tell you where these support groups are in your area. So maybe that is an idea. I am going to try it out here it is one Monday evening a month. She says it was awesome because everyone is in some stage of having this disease so everyone has different information and she said it was a very comfortable setting.  Sorry looks as though I posted this in the wrong area, being you were asking about Prednisone.  Sorry about that

Post Edited (mollymcbutter) : 3/19/2009 6:02:47 PM (GMT-6)


Scarlet504
Regular Member


Date Joined Oct 2008
Total Posts : 192
   Posted 3/19/2009 6:38 PM (GMT -6)   

qwerty,

the shakiness/anxiety/crying spells completely stopped for me when I was on 10 mg or less. However, everytime I change the dose (down or up didn't matter) the shakiness/anxiety/crying spells worsen for two or three days until I got used to the new dose again.

I understand what you are saying with standing longer than 45 minutes and with feeling lightheaded. It could be from the anxiety too. If it gets too bothersome, you could ask your doctor for anti-anxiety med. I couldn't have made it without it sometimes. It effected me big time. I don't know how to say otherwise, but I felt like coming down with Tourette's syndrome. I cussed everyone in a bad way and I just blew up with the slightest thing. I am not like that at all. I explained people around me what was going on and that I can't control the anger and said sorry in advance and it helped being a bit relaxed about the side-effects - not as an excuse for being such a biotch, but an explanation.


Scarlett, 38 yo., TX
Pancolitis since 3/1997
Meds
6 x Asacol a day
75 50 mg 6-MP
Align (probiotic)
Flintstones Complete Vitamins


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/19/2009 6:41 PM (GMT -6)   
I'm SO HUNGRY. I could eat and eat and eat and eat.
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 all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 3/19/2009 6:50 PM (GMT -6)   
Scarlet504 said...

qwerty,

the shakiness/anxiety/crying spells completely stopped for me when I was on 10 mg or less. However, everytime I change the dose (down or up didn't matter) the shakiness/anxiety/crying spells worsen for two or three days until I got used to the new dose again.

I understand what you are saying with standing longer than 45 minutes and with feeling lightheaded. It could be from the anxiety too. If it gets too bothersome, you could ask your doctor for anti-anxiety med. I couldn't have made it without it sometimes. It effected me big time. I don't know how to say otherwise, but I felt like coming down with Tourette's syndrome. I cussed everyone in a bad way and I just blew up with the slightest thing. I am not like that at all. I explained people around me what was going on and that I can't control the anger and said sorry in advance and it helped being a bit relaxed about the side-effects - not as an excuse for being such a biotch, but an explanation.


Thanks for your reply, can I just ask how you define anxiety - would it be your heart randomly beating fast sometimes, and getting the shakes etc? Thats what I get. Its interesting you say the anxiety can cause the feeling of being lightheaded - maybe thats what my problems been all along!
22 year old female, from the UK.
 
Diagnosed with Ulcerative Proctitis Jan '08, Proctosigmoiditis Jan '09.
Hospitalised Jan '09 for IV Hydrocortisone - had no effect!
Hospitalised Feb '09 for a week of IV Hydrocortisone.
  
Currently taking daily: 
30mg Prednisolone tablets (tapering)
5mg Prednisolone suppositories x 2
1g Mesalazine suppositories x 2 (soon to change to Acetarsol)
1g Mesalazine granules x 4
Fybogel supplement
Vitamin tablet
 
                             
                             


mollymcbutter
Regular Member


Date Joined Mar 2009
Total Posts : 130
   Posted 3/19/2009 7:54 PM (GMT -6)   
I was blaming menopause for bad behavior now I think I will say prednisone instead tongue
Scarlet504 said...

qwerty,

the shakiness/anxiety/crying spells completely stopped for me when I was on 10 mg or less. However, everytime I change the dose (down or up didn't matter) the shakiness/anxiety/crying spells worsen for two or three days until I got used to the new dose again.

I understand what you are saying with standing longer than 45 minutes and with feeling lightheaded. It could be from the anxiety too. If it gets too bothersome, you could ask your doctor for anti-anxiety med. I couldn't have made it without it sometimes. It effected me big time. I don't know how to say otherwise, but I felt like coming down with Tourette's syndrome. I cussed everyone in a bad way and I just blew up with the slightest thing. I am not like that at all. I explained people around me what was going on and that I can't control the anger and said sorry in advance and it helped being a bit relaxed about the side-effects - not as an excuse for being such a biotch, but an explanation.



sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 3/19/2009 8:43 PM (GMT -6)   
Thanks guys... I am hoping it gets better soon. I really just want it all to go away so I can start living my life lol.

Elaine- I'm not 80 pounds overweight....yet, but I'm 40 pounds overweight and I miss being the weight I was ONLY a year and a half ago when I got married...right now I'm 192...I was 150 when I got married. darn freaking prednisone I can't get away from it. It helped me the first time...It's not helping me at all right now. I am terrified of this stupid Imuran. I wanted to start a family, but that seems like a lifetime away with all these crazy meds. I just wish I could have surgery and take it out of my life. I know I've only dealt with it for 4 years, but I am so tired of it...all the trial and error..not being me...I want to be ME!

My other symptoms with pred... huge temper/anger...tons of mood swings... anxiety(but I have that anyways with the disease), weakness, joints hurt, EXTREME FATIGUE....which is unlike pred, acne, hair falls out... I am always hungry... no matter what dosage... I drink tons... gain weight, hold water and salt, and blow the heck up in to a HUGE BALLOON and i hate my body right now (sorry that just came out, but I need to say it to someone) It's changed my body COMPLETELY. I've never had a tummy EVER and I look like I have a 6 month term baby in there... I feel so unattractive.
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 3/20/2009 4:15 AM (GMT -6)   
Oh... I started prednisone 40 mg yesterday and I already feel better... But now I am scared of getting all the nasty side effects!

Do you guys think 40 mg for two weeks and then tapering of 5mg a week until I take no more pred is enough medication to give me the moonface, weigth gain, acne and such?? Sweetmelody, I am so sorry you have had all those side effects.. do you feel better though, I mean with the UC?? I noticed my face seems redder than ordinary ( but again I was as pale as a ghost)... might it be the pred too?
Diagnosed with pancolitis 19/03/09
Prednisone 40 mg, Mezavant 4.6g
 

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