Prednisone woes

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

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/31/2009 11:53 AM (GMT -7)   
I know most people say that they have problems with prednisone side effects while on higher doses, but I have noticed that I feel the worst with it as I taper off. I'm down to 10 mg again and am craving sugar like mad while having terrible mood swings.
This was never really an issue at higher doses...I had moon face and a pregnant looking stomach (also probably from partial blockage) for a small period of time a couple months ago, but other than that I have been relatively normal and able to control me eating habits as well as mental state.

I was just wondering if anyone else experiences this? I just know as I get lower on my dose I feel shaky when I don't have sugar and will cry for no reason at all. This happened last semester in school and made me miss chemistry lab from the severe tremors.
I just don't understand why it happens this way unless it's a sort of withdrawal.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 5/31/2009 1:41 PM (GMT -7)   
I believe it is both just from having any amount of it in your system and from withdrawal. I'm on 12.5 mgs right now and have only been on prednisone for 10 days--definitely got the insomnia, mood swings, sugar cravings, etc right away. For me it helps that I can recognize that the sugar craving or the sudden outburst of crying is from the prednisone so I can so, "ok, I can stop this" or "ok I have to go with it and let it out." I also get bad dreams with prednisone. The third night, I dreamt I ate a banana and it came out WHOLE through my stoma. GROSS! Sometimes, I can stop the dream and others I just have to say, ok that was a bad dream due to prednisone. The other night I reorganized the linen closet, my tshirts, the baking pans. . . you get the idea. It's an upper and even if we're on a small does, we're going to feel the effects

I try to increase my fluids, limit caffeine, walk a lot, and watch my salt. Sometimes it helps and sometimes it doesn't. At least I know I'm not going batty. A little xanax does help and, at night, I used to use 1 tablet of simply sleep or an herbal equivalent called sound sleep.

Look at all these baseball players who just gave up their steroids and now they can't hit at all!!
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 5/31/2009 4:21 PM (GMT -7)   
Sammies, I just laughed until cried about your banana dream. I hope thats ok. I also had weird dreams while on prednisone. I dreamed that instead of my ostomy bag filling up the doo doo was spreading out under my skin. Kind of scary like yours. Thanks for the laugh though, I really needed one today.
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 8 months ago. Now on Remicade, B-12 injections and iron. Feeling much better!
God Bless. Tony


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/31/2009 6:04 PM (GMT -7)   
LMills - I am always a mess when I taper to/through the lower doses. It starts right about 10, maybe a little lower and lasts for a couple weeks after I am done entirely. I always joke that nobody wants to be around me when I'm at the end of my taper!

I'm at 12 methylprednisolone now (like 15 or so pred) and dropping again in a few days. I expect it to start soon for me too. I usually get a rash on my face when I withdraw too.

Basically, while I am on it I do alright. I am sort of manic - can't sit still or sleep. But, usually *super* productive. (Of course moon face - I get that too) But, going off works a number on me.

Hang in there!
 
PS - when I freak out more than I can handle, I slow the taper...  Then alternate days as I start to go off...  One day on lowest dose, one day off, one day on -- for a week or so then off.  It's a rough ride...
--female dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--currently taking methylprednisolone 40mg-taper.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/1/2009 10:05 AM (GMT -7)   
Thanks guys...I was just curious to see mainly how prednisone affected other people e.g. which doses were the worst, which symptoms you suffer from the most.

I'm reading a book right now called "Coping with Prednisone" that has a lot of great information so that has been helping as well.

I hope all of us can get off of this! I wouldn't mind so much, but I worry about osteoporosis. Have any of you had bone density tests done?
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 6/1/2009 12:07 PM (GMT -7)   
I just began my taper today... I know how you feel.
 
I was on 40mg a day now went to 30 mgs this morning.
 
I am doing my best not to have munchies but it has been really hard. I am overweight already so any more weight just makes me miserable!!
 
I found in my previous tapers sometimes I need to go down 5mg instead of 10 for a few days. it seemed to help out some.
 
I hope your taper goes well!

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

 

 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 6/1/2009 12:40 PM (GMT -7)   
I actually already have osteoporosis...  I was right on the border (-2.5) so I pushed for a drug called Forteo.  It actually builds bone mass - much more effective than the bisphosphonates.  But, seeing as I am steroid dependent, they went ahead and approved the med.  Typically the bisphosphonates are the first line treatment.  I am so thankful to take Forteo!!!  it's a daily subcutaneous injection and I will be on it for two years total.  That's the FDA regulated timeframe for taking it.
 
I will have another bone density test in about 8 months, which will be one year into my Forteo treatment.  Ahh, the far-reaching effects of Crohn's...
--female dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--currently taking methylprednisolone 40mg-taper.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/1/2009 4:42 PM (GMT -7)   
karendee-I totally agree that 2.5-5 mg tapers are best. I went down from 15 to 10 mg recently, and that's when everything started up again so it may just be how I react regardless.
I guess it's just something we have to tough out and hope our loved ones understand..

sr-I had never heard of either of those but am really intrigued. I always thought my best hope was to take calcium and glucosamine (not that they hurt but, hey).

It really is amazing what we get from Crohn's aside from gut problems hah...I guess we'll see.

Good luck to you on your medication, sr.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


lenagirl
Regular Member


Date Joined Aug 2007
Total Posts : 44
   Posted 6/1/2009 5:29 PM (GMT -7)   
I'm now on 12.5 mg, and I definitely have side effects, although most of them are the same or less than at higher doses. I definitely have insomnia from it and I also have anxiety (although I can't be sure that's b/c of the Pred). When I tapered from 15 to 10 a couple of months ago, my insomnia seemed to improve slightly but my anxiety levels seemed to go through the roof and I felt like crying all the time. I told this to my GI and she said that it could not be a result of the taper, and that even though pred does cause anxiety, it would only get better when I dropped my dose. I'm not sure I believe her, because it definitely didn't feel like that to me, but it's difficult to tell what was going on because I only stayed at 10 for about a week, since I started to flare again almost immediately after dropping the dose. I'm getting ready to attempt tapering down to 10 again in the next 2 weeks though, so we'll see what changes I notice in my side effects.

On the bright side, moonface does not appear to be a side effect for me on this dose. In the last 2 weeks I've finally started to look normal again, which is a big relief. The other body/belly fat went away much sooner, and my sister had taken to telling me I looked like a lollipop due to the weird combination of a super fat face with a stick-thin body.
21 years old, diagnosed with CD at age 18,
First major flare since diagnosis started in Nov. 08. Still recovering and mostly stable, but having trouble tapering Pred.

Current Meds:
Prednisone 12.5 mg, Azathioprine 75 mg (just started 5/03, but think it may be working), Asacol, and Rowasa
Plus Vancomycin and Florastor for a recurring case of c diff.


cindywchrones
Veteran Member


Date Joined Mar 2005
Total Posts : 1115
   Posted 6/1/2009 5:38 PM (GMT -7)   

I am swollen & have the moon face right now..I do have the sugar cravings, munchies, and the shakes..I started a new job today and woke up to a vivid dream with the background music ect..I don't normally have any recognition of any dreams..I am at 5mg was up to 40mg at one point.  I noticed the withdraw when I was dropped to 10mg..I have been on predisone since the beginning of January..I noticed I am having problems with my feet falling asleep when I am sitting for along period of time..I noticed a big bruise on the side of my leg which I don't remember getting..??  I can eat alittle too well now!!

 

Cindy


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 6/2/2009 6:53 AM (GMT -7)   
This week I went down 10mg but for the next one I am planning on 5mg. It is less of a jump for me and I hope it helps. I did get some symptoms come back today so I am wondering if the 10mg was too much of a drop

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

 

 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/2/2009 8:48 AM (GMT -7)   
Cindy and lenagirl-I'm having the same problems!! I got so upset the other day because I made a sandwich and my boyfriend cut it vertically instead of horizontally. I normally couldn't care less about something as minute as that!
And getting to sleep has been a problem..
I've thought about taking tylenol PM but am afraid of being too groggy to function, and I am wary of using too many meds at once.
I'm still on 10 mg and am going down to 7.5 this Thursday so we'll see I suppose.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 6/3/2009 6:21 AM (GMT -7)   
I forgot to take my pred this morning. I am on 30 mg now. I am so dizzy right now it is awful!
 
I wonder if I should take some when I get home or wait for tomorrow's dose?
 
This SUCKS!
 
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

 

 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 6/3/2009 8:22 AM (GMT -7)   
I thought you could still take it?..
I remember a few times where had to spread it out anyway. I understand at being hesitant to do something like that though. I prefer taking it the same time everyday too..

I swear though I can't wait to be off of this stuff. I'm so stressed out already and the mood swing effect is not helping. Apparently I am losing insurance within the next 2 month period, and all the places I am checking have that nice preexisting conditions clause.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking: Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics prescribed by my GI.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
bonniegriffith.blogspot.com/
Learning how to live again.
"He who has a why to live for can bear with almost any how."


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 6/3/2009 8:57 AM (GMT -7)   
I think I will still take it when I get home. I should be home at 530 and I won't take my next dose till tomorrow morning.

Sucks you have insurance problems. Also, check with your state for insurance. I looked this up for an employee here that lost his job and he went to the local office and applied for low cost insurance. It probably won't be the best but better than nothing!

I am ready to be off this pred too! SUCKS!

Good Luck! Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

 

 

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 03, 2016 6:48 AM (GMT -7)
There are a total of 2,732,021 posts in 300,982 threads.
View Active Threads


Who's Online
This forum has 151148 registered members. Please welcome our newest member, Bui.
233 Guest(s), 5 Registered Member(s) are currently online.  Details
81GyGuy, Ruey, Milla, Traveler, maioeiage


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