Starting Pred, need advice...

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Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 5/5/2008 9:45 AM (GMT -7)   
So I called my GI this morning. The diarrhea kicked in finally, showing me it's full ugly head of a flare. They pulled my lab results from what my primary doctor took. My primary had me on a tapering pack of Methyiprednisolone. With my largest dose only being of 24mg on Friday, and today I just took a small 12 mg dose.
 
My GI wasn't pleased with that I guess. He wants me on Pred, 40 mg. Is that pretty standard to start? I've never been on pred, so this is a whole new territory (that I've been dreading for 2 years since my diagnosis). What can I expect? Is the side effects really as bad as I've heard?
 
I know I have no choice here. Between all this strange swelling and now flare to go with it. I need help, I went from feeling good and in remission for so long, to what feels like my world being spun upside down. sad
~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.


lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 5/5/2008 10:32 AM (GMT -7)   
Hi Jennifer:

I and I am sure a lot of others feel your pain. Do some research on Prednisone and side effects and figure out what in your control can you do to help with not getting the side effects. Steroids are not a fun drug BUT they can do the trick temperarily. I am very sick and on 40 mg right now as well. I hate steroids, but they will stop my severe bleeding. If I were you I would go to the book store and get a book on prednisone and read it. It will give you some ideas.

Of course I am not a doctor but here are some things I know and I try to do:
* Take them in the morning as they can keep you up at night. This is a common side effect
* Get as much exercise as you can (take walks, lift small weights at home)
* Try not to eat too many salty foods
* If you get hungry snack on healthy things: fruits, applesauce, a piece of toast or even a piece of string cheese if tolerated, an apple, etc.
* Steroids can make you much more hungrier than normal so just be extra aware of your body

As we all know we cannot really control all of the side effects but we can do our part to at least try the best to help ourselves.

A "moon face" as they call it is a common side effect. However, do the above and it should be minimal.

Keep your head up to when you are on steroids! I know it is so hard as I hate steroids. It can alter your mood as well. Don't stress too much over it as it may do you good and you may feel better and it may get you through this hump.

Please e mail me with any questions @ anytime: brittanyda@comcast.net

Here for you always!

LOVEPINK
I have had Crohn's since I was 21 years old and I am now 27....

On HUMIRA....


Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 5/5/2008 10:49 AM (GMT -7)   
Thank you so much lovepink, that's exactly the kind of info I was looking for!
~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.


Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 5/5/2008 1:27 PM (GMT -7)   
Anyone else want to share their experiences or advice? I just took my first dose, fingers crossed. I have an appointment next week with my GI too. He gave me a month worth at 40 mg a day. I'm wondering what the average time a person is on pred?

Also do you find you catch things easier while on it?


~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.

Post Edited (Jen77) : 5/5/2008 2:31:27 PM (GMT-6)


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 5/5/2008 1:59 PM (GMT -7)   
I've been on Prednisone for the first time ever over the past 2 weeks. For 2 weeks, I was on 20mg a day. The 3rd week has kicked in and I'm tapering to 15mg a day for the next week.

Since being on this particular dose of Prednisone, once it started making my bowels and arthritis better, I've been WIRED!!!! At first I was foggy-feeling but now I'm jittery. I've gotten so much done!!! Mentally I'm more focused and I've spent A LOT of money because I haven't felt well enough to get out shopping over the past 4 months! It has made me shaky but I've put all that energy into painting the walls of my new house and organizing old photographs.

That's been my experience SO FAR with the Prednisone. I hope your experience is as GOOD.
Diagnosed in October, 2004 at age 33.
36/F/SC
Currently taking Colazal, Nexium, Ferrous Sulfate, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 5/5/2008 2:08 PM (GMT -7)   
That's wonderful to hear Kittkat! Having more energy would be a plus here too. I've been so tired. It's funny but I guess I was in denial about how I was feeling. Slowly the stomach pains and diahhrea here and there was coming on. But I always had an excuse. I ate the wrong thing, I had a stressful day. Then the tiredness came on. Always had an excuse for that too. I even had a rash all over my legs, that I just thought was excema. Now I wonder if that wasn't it either.

This swelling thing is awful though. My hands are still puffy a bit, and in the shower today they wrinkled up really fast. How weird is that? I'm also have some joint pain now on top of everything else. I'm hoping this is a quick turn around for me.


~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.


gachrons
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Date Joined Mar 2007
Total Posts : 4527
   Posted 5/5/2008 2:49 PM (GMT -7)   
Hi Jen I got so almost anything would pop out of me so tell people that if you start talking like you don't want them around or say something a little off that the pred. can sometimes do this. I had night sweats and some hair problems like more of it in places a girl don't want but I was on it for a long time. I started at 40 too when I got out of hos. and ate anything I could get my hands on. It did get the BM's solided up though for the first time in 25 years. Good luck lol gail

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 5/5/2008 3:10 PM (GMT -7)   
Hey Jen - I was EXTREMELY lethargic, too! I'd gotten to a point that I could barely keep my eyes open during the day at work and when I got home I immediately went to bed. My head would be nodding back and forth and my body just felt like it couldn't move. It wasn't a sleepy feeling either. It was that sick, malaised feeling. I didn't have energy to eat which didn't matter to me because I didn't have an appetite anyway due to the abdominal cramping and D.

My hands weren't swollen but my ankles sure were...to the point I couldn't walk. The Prednisone took away the joint pain/swelling within days. I don't know what's going to happen once I'm OFF the Prednisone...so I'm getting AS MUCH DONE as I can since I have no idea what things will be like 3 weeks from now when I'm off the Pred.

I really hope you have good luck with it. :)
Diagnosed in October, 2004 at age 33.
36/F/SC
Currently taking Colazal, Nexium, Ferrous Sulfate, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 5/5/2008 3:16 PM (GMT -7)   
I actually have fewer short term side effect (mmod swings, restlessness etc) on Prednisone than I do on the medrol dose packs. I also find I have more energy and generally feel beter on the pred then off of it. I am on another med (plaq) that makes me completely lose my appitite so I have lost 40 lbs in the six months I have been on pred.
Sj

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 5/5/2008 3:22 PM (GMT -7)   
You guys are making me feel a lot better about taking it. I have to say it felt like the end of the world when they called and said he wanted me on 40 mg. I've just heard so much bad about it. I'm hopeful for the good, because we get so used to suffering all the time, it would be nice to not have to suffer. Even if I have to deal with some side effects, it's gotta be better then this.

Now I also have to do a stinkin stool sample. Oh, I love doing those. With the way I'm going it shouldn't be too hard to get that done, if I have anything left in me for a sample!
~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 5/5/2008 4:23 PM (GMT -7)   
I turned my nose up at my GI a few weeks ago when he told me he wanted to put me on Prednisone. I was very worried how my body would respond to it.

The time before that when I turned up my nose at my GI was when he handed me a stool sample kit to complete at home...when he saw me turn my nose up he said, "Well, I COULD do a rectal exam right now instead if you wish!" NO, NO! I'LL DO THE STOOL SAMPLE MYSELF! :)
Diagnosed in October, 2004 at age 33.
36/F/SC
Currently taking Colazal, Nexium, Ferrous Sulfate, One-A-Day multivitamin, Omega-3 Fish Oil, Vitamin D, Vitamin A
Secondary conditions: mouth ulcers, joint pain, extreme fatigue


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 5/5/2008 5:12 PM (GMT -7)   
LOL Yeah, I'd prefer to do it myself too!! They told me if I can't get it down there within an hour, I need to freeze it. Oh lovely, just what I wanted in my freezer! Oh the things we go through!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.


kgirlie
Regular Member


Date Joined Jan 2008
Total Posts : 101
   Posted 5/5/2008 7:42 PM (GMT -7)   

Hi Jen,

I have been on 35 mg of pred for 12 weeks now, it was supposed to be 4 weeks. I have gained 60 lbs, have a moon face, and some mood swings BUT it saved my life. I couldn't even get out of bed to go to work or take cdare of my two kids. Thanks to a WONDERFUL husband, I have made it through. I am down to 230 mg and starting my taper. I have every side effect Pred can give you and although it is hard mentally, I think it is the only reason I survived the last three months. It is a good drug temporarily. I have now started remicade, yeah, and I should be totally off by mid summer. It did help make me feel better, bot good, but better. I am glad I went on it, but I can't wait until I'm off of it. I hope it is temporary and it will give you more energy (and MAJOR munchies) ;) I wish you all the luck and hopefully you will feel better soon. Remicade is my miracle drug and it's the best thing that happened to me and my family, Prednisone was a stepping stone to get there.

(Hugs)

Kgirlie


Kgirlie
 
27 year old female dx with CD in 2001. Pentasa 4 g/day, Prednisone 30 mg/day, Lexapro 20 mg/day, Maxalt 10 mg as needed. Mother of son, 3, and daughter, 9 months.  


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 5/5/2008 9:11 PM (GMT -7)   
Well an area on my right hand tonight has swelled up. I just can't handle this swelling, I was hoping it was gone. :( I can only guess because I was tapered down so fast on that methylprednisolone pack that it just didn't do any good. Certainly not a high enough dose, considering at the highest it was only 24 mg. I need some relief fast, I sure hope it comes soon. This will probably be another night of being scared what will swell up next. :(
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.


kgirlie
Regular Member


Date Joined Jan 2008
Total Posts : 101
   Posted 5/6/2008 7:04 PM (GMT -7)   

Hang in there Jen. My whole body is swollen and I just need to laugh about it. I think it is harder mentally to be on pred than physically because of all the swelling. I was thinking about you today. I know what your going through.

((((((((Jen)))))))) Here's a big hug for you.

Kgirlie


Kgirlie
 
27 year old female dx with CD in 2001. Pentasa 4 g/day, Prednisone 30 mg/day, Lexapro 20 mg/day, Maxalt 10 mg as needed. Mother of son, 3, and daughter, 9 months.  


jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 5/6/2008 8:05 PM (GMT -7)   
To add on what everyone else has said, be aware of the 'roid rage. if you take pred in the morning, let's say, at 7a, by 7:30 you are gonna be feeling mean. Or you might cuss someone out and then realize that you have no idea why you did that. This isn't just me being male here. Anyone on Pred is more easily irritable than their steroid-free counterparts. warn your loved ones. And we aware. that way you can try to control it.

good luck! pred is a wonder drug for the short term for sure!

J

Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 5/6/2008 9:05 PM (GMT -7)   
I haven't been off of prednisone since I was diagnosed in November 2006... When I was feeling okay, I had managed to convince my doctor to lower my dose from 20 mg a day to 10 mg a day... but since I've gotten to feeling worse... it's been steadily increasing... I'm on 40 mg a day, now....


:(... The medicine makes my cheeks poofy... and rosy-colored... and it makes me break out real bad... and yeah... Makes me hungry all the time...


And I'm still not feeling better... but I'm hoping I'll get to feeling better soon... :(... I'd do anything to feel better....
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 5/6/2008 10:19 PM (GMT -7)   
I really appreciate all the support, it's hard because no one in my "real" life understands this at all. Means the world having people who are right there with you! I've warned everyone about the mood swings. So far I've just sat on the couch earlier crying for really no reason. Well the stress of this flare has gotten to me, but I really couldn't say that's why I was crying at that moment.

I woke up early this morning. I tried to fall back to sleep, but then started thinking about all the weight I'll probably gain, how I'm gonna look all puffy. Then I upset myself. LOL Oh it's not funny, but yeah sometimes you just have to laugh when it gets all to be too much. Then the big D hit me. *sigh*

My D was pretty bad today too. My husband had to remind me it was only day 2 of this dose, and what did I expect. I don't know, instant results would be good! LOL

Celey, I hope you start feeling better. I know EXACTLY what you mean about doing anything to feel better.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.


Celey
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Date Joined May 2007
Total Posts : 1284
   Posted 5/6/2008 10:32 PM (GMT -7)   
Don't feel too bad about the poofiness.... I like to call 'em 'chipmunk cheeks'... Makes 'em sound cute... :)
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 5/6/2008 11:21 PM (GMT -7)   
LOL There you go! I'm going to have to borrow that line! :-)

Do you guys find that you catch colds/flus easier? I seem to catch stuff pretty easy as it is, and I was reading it could make things even harder to get over. Just wondering if that's what you guys have experienced?


~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Predisone 40mg, and Asacol.


becellea74
Regular Member


Date Joined Apr 2008
Total Posts : 90
   Posted 5/7/2008 4:37 AM (GMT -7)   
hi iv been on and of pred fof 15yrs now i have no teeth left because it causes calciam def,but they have always worked for me dread actually stoping them its been so long. :-)

OzCrohnie
Regular Member


Date Joined Jan 2010
Total Posts : 61
   Posted 1/2/2010 5:53 AM (GMT -7)   
Hiya,

I've been on and off pred for 8 years now.

My doctors never liked me to be on it, so I was really only given it when I'd have a really bad flare up. It has always fixed me up and made me feel great! The only thing I did not like about it is that it gave me really bad acne. Which, being in school at the time, I found to be quite horrible and embarrassing.
I did get the 'moonface' (my cheeks would get bigger making my face look more fuller) but given the fact that I was (and still am) basically skin and bones it made me look a lot healthier.

One other problem I did have with it was that I had a lot of trouble trying to get myself off it the last time I took it (excluding now), once I got it down to a particular dose I'd just get sick again, but the doctor eventually fixed that by giving me Infliximab.

WriterMum
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 1/2/2010 7:42 AM (GMT -7)   
My 2 prednisone experiences were different. The first time I felt wonderful. I had huge amounts of energy. It kicked in right away, and I had lost so much weight that the small weight gain I had on the prednisone was a bonus. When I tapered off I had no problems at all. I didn't get acne or anything and I didn't get sick because it was in April/May that I started, so it wasn't a bad time of year.

The second time was a different story. This last time I started in February and I was already pretty run down with other stuff - ear infections etc. It took a long time for the prednisone to work. I had to do 3 days on IV steroids to get it started. It took a couple of times tapering to work. The first time I tried to taper the flare came back. I got a really bad moon face, and some acne on my face and chest. I had terrible night sweats. I had to change in the middle of the night. I kept getting infections of other sorts too. For the first few weeks until I was at a lower level I had to keep my feet up alot as my ankles swelled all the time. I put on weight, which was not good as I was already a bit heavy. This time around I had only about a week when my energy levels were good. My own cortisol levels took a long time to get back up even after several weeks of being off the prednisone. On the plus side my psoriasis disappeared!

Despite these issues I have to say that the prednisone was a necessary evil. I'm afraid that it is just what has to be done sometimes to stop the serious problems with Crohn's. The tips I have are what have already been said:

Take the pills early in the day.
Warn people about your potential mood swings.
Watch what you eat especially at first on the higher doses - salty foods will make you hold water and swell your ankles.
Keep your feet up as much as possible while you are taking between 20 and 40mg.
Try not to taper too fast. Be prepared to go back up if you get any symptoms returning. Don't worry, it is pretty common.
Take calcium and vitamin D to combat the bone issues.
Don't overdo it even if your energy is good. Be kind to yourself. You may not realise that you are overdoing it and you could catch a cold or something more easily.
Keep extra pyjamas by your bed so you don't have to wake up too much to change if you get sweaty.
When you are on lower doses of the prednisone, enjoy the fact that you can eat practically anything!!
44 years old. Diagnosed with moderate to severe Crohn's in April 2005. Hiatus hernia diagnosed in 2008. Had Crohn's under control until March this 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, Calcium and Vitamin D, Matamucil, Yogurt for probiotics, Salofalk suppositories as needed.


jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 1/2/2010 7:33 PM (GMT -7)   
I was on prednisone 40mg for close to 4 months and it was the worst experience of my life. Initially no sx for about first 2-3 weeks. Then I started to get really fatigued (this was the worst!!!!), had a unilateral headache, bad acne. Then tapering off of this crap takes months as well so I started getting really bad depression and was suicidal. Also had bad anxiety and panic attacks requiring lexapro and xanax just to sleep. I was getting muscle twitching all over my body which has persisted to this day. I hate prednisone with a passion but understand that it's what's needed to stay alive sometimes. However, elemental diet has been shown to be as effective as prednisone at achieving remission, but it takes a lot longer. My doctor is willing to give me an elemental diet instead of prednisone if I get a flare again. I would def do that instead of subjecting myself to the death pill known as prednisone.
Crohn's Colitis diagnosed 6/08
Organic SCD since 4/09
Remicade since 6/09
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D + zinc + Barlean's fish oil
Remission


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/3/2010 6:16 AM (GMT -7)   
I've been on Pred many times through out my life. The only side effects that I have had are: Energy boost, Eating everything, night sweats, and when tapering my knees would hurt really bad and i would have to slow down the taper.
Other then that the drug has worked miracles for me, do I like taking Pred? NO! But there are times I need to do so to stay alive.
I don't know if it is the Pred or the disease, but the only major issue that I have is Osteopena and it is getting worse. Is it Crohns or Pred? I can't answer that.
Keep your chin up and try to stay happy and do alot with the extra energy that you will have to keep the depression away.

Wishing you well.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

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