Starting Pred, need advice...

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.

Thank you so much lovepink, that's exactly the kind of info I was looking for!

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.

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

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

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! :)

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

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

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....

Don't feel too bad about the poofiness.... I like to call 'em 'chipmunk cheeks'... Makes 'em sound cute... :)

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.

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!!

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.