Feeling down tonight

I had my appt with my doctor today and he said the P word - I never wanted to hear to word prednisone come out of his mouth.  In the past I have tried Salofalk (didn't have much improvement on it), Mezavant (worked well for awhile and then I started just passing the tablets through whole.  I am on Entocort (but it isn't really cutting it and my blood work just keeps getting worse),  I take Methotrexate injection once a week.  I did do a study drug.  I had 2 infussions of it.  After the first I had mild reaction, some minor itching but that was it.  I had the 2nd infussion and I had major itching, could hardly stand clothes touching my skin, slight swelling of my lips, swelling of my eye and they felt like sandpaper everytime I blinked.  My doctor couldn't tell me yes or no if the reaction would just continue to get worse with each injection.  He never out and out said I should stop the treatment but I told him I was scared to continue it.  He took me off it and since I have been on entocort (3 tab day) and methotrexate.  If I could of stood the allergic type reaction for the infussions I would of continued, because I was feeling good as far as my Crohn's goes.  Now we are at the P word.  He says we will see how I tolerate this and if I don't tolerate it then it will be Remicade.

I am hating the thought of Prednisone.  Maybe all I have heard are the bad horror stories and none of the success stories.  I don't want the moon face and I don't want the huge weight gain.  I don't want the sleeplessness.  I don't want the crazies!  So if anyone has some good news stories I would love to hear them.  My tablets are 5 mg and I am taking 6 a day.

I take the 30 mg/day for 2 weeks and then see my dr. He said he would start a taper than down to 25 mg/day.

I know that I am just feeling sorry for myself tonight. Hopefully in the morning I will have a better outlook.

Thank you David. I have been reading a few other threads on here tonight and one really hit home with me. Made me realize that things could be away worse and that I should be looking for the bright side instead of the dark side.

Mom,

I just went through a really bad flare-up. The doctor put me on prednisone as a last ditch effort before going to humira. Thankfully, the two-month course (starting at 30mg and taper down) worked. Yes, the side effects suck, some way worse than others. I found that I was mostly irritable and couldn't ever sleep...especially for the first two weeks (I'd be ABLE to fall asleep around 3am and wake up at 5am...some nights I didn't sleep at all). Also, the bloated face and hands symptom really blows. But I actually liked a few of the side effects I got. Because I was getting more nutrients, my hair was healthy and full and my skin was really soft.

It was also the first time since I was diagnosed that I didn't feel pain. For the past 7 years, I have been in pain every single day. Some days are milder than others, but I always feel pain when my body is digesting food or gas moves through my intestines. It felt great to NOT KNOW when my bowels were moving and digesting food.

Now that I'm off it, I do get some pains, but it definitely helped me get back down to a better place. The symptoms are worth the results, in some cases. Its not a drug to use often or for long periods of time, but any doctor worth his salt wouldn't put you on it forever with the knowledge we have of it.

I'm on my 2nd round of pred.  Started the first round at 40 and tapered down 10 a week until I started flaring again at 10.  Doc put me back up to 40 and I've been tapering slower this time (40 for a week, 30 for a week, 20 for two weeks, 10 for two weeks - I'm currently at 10).  The taper seems to be going better this time - no signs of flaring or joint pain.

Although the first round didn't really do the trick over the long haul, I've had a pretty good experience with pred.  Like BB Decaf said, the energy boost is awesome.  I got so much done during those first few weeks.  And I didn't notice any anger or psychosis of any kind.  For the most part I was euphorically happy!  It totally knocked out any signs of my disease while I was on the higher doses.  Sweet relief!  I also didn't have any weight gain or moon face during that first round.  But since then, on my second round, I've gained like 7 pounds, which seems to have landed right on my gigantic face.  But remember, I've been on it now for close to 9 weeks.  I'm so close to being off it, and I'm hoping sooo much I don't start flaring again!

Hopefully you'll just need a quick 4 week treatment or something like that to knock your symptoms down, in which case I wouldn't worry too much about the side effects.  I think once you experience it, you would gladly take the side effects over the pain you are in now!

Lori

Hey Mom,

Totally off topic, but just read your tagline. Don'cha just LOVE grandbabies???? We have a grandson named Ollie who's 2 and another who will be joining us in November. LOVE THEM!!

Hey Mom,

I consider Pred a necessary evil sometimes. Its one of the best drugs to quiet a flare down. I am glad to see your doc only started you on 30 mg. Some folks will come on here posting that their doc just put them on Pred and they are starting on doses like 60 mg. I will not let a doc put me on higher than 30 mg. Anything about that I get BAD side effects.

Just a few tips, be sure you take them as early in the morning as possible. When I do that it helps me to avoid the insomnia. And try to drink alot of water while on it, this will help to offset some of the swelling that can occur. Good luck and I hope this round of Pred does the trick. Hugs!

I personally hate pred. but insomnia is one of the side effects that you can do something about. Ask you Dr about a short course Rx of ambian or something similar to help you out while you are on the steriods.

I wish you well on pred. My starting dose is often 80mg, it's tough going sometimes with roid rage and the
bad hunger, but you know, some people actually like them, we all so different!! Main thing is, they will make
you feel better... Hang on to that thought!!

Tulipg17 - Insomnia will be hard for me to handle I think - I LOVE my sleep LOL! It is nice to know that there is something that can help combat that issue

Sniper - Today hasn't been too bad. This morning I was feeling a bit like a jet plane on crack. I did get a whole lot accomplished though. My husband came home for lunch and he said, oh you have been cleaning, oh you have been really cleaning LOL Not feeling any ill effects yet. Thanks for your concern.

dunny2 - Last night I told myself that I would allow that oh woe is me and feeling sorry for myself but that when I woke this morning I would be looking at the brighter side of things.

I hate the prednisone but it hasn't been all bad in the past. Ive just struggled with weight/self esteem issues all my life so the whole moonface thing is horrible for me. Also, the few times I was on prednisone happened to be when I was single. Its a lot different when you have a support system. Last time when I wa on 40 I did get the moonface but not as bad as when I was on 60, so the 30 isn't too bad. Watch your salt intake if you can, 'cause that can make the moonface happen quicker.

The sleeplessness does suck but sometimes I miss the crazy amounts of energy I would get on the steroids - I would get soooo much done - cleaning, work, etc. So they are some good things that come of it!

Good luck! :)