What to expect when taking Prednisone

[chefcutiepie]

so starting pred today, 80mg for 3 days , then 70 , 60 and so on... not sure what to expect but looking forward to some relief as i havent beein able to use the bathroom easily due to being very inflamed. main thing i would like to get some advice on is what i can eat while im on pred sould i stick to my low residue? can i maybe eat some things that you cant normally?? hellllo
:holidays:

 

[Nica]

For me going on pred slowed down the D, got energy and crabby. I wouldnt go off your low-residue diet till you see how you respond.

 

[ChefShazzy]

Wow, that's a pretty high dose to start with - I'm sure you'll finally get some relief! It might take a week or so for it to kick in, but once you feel better, you'll be so hungry you'll pretty much want to eat everything! Once it kicks in, you should be able to add some more interesting things to your diet.

In my experience, though, once you get down to 30mg, you're going to want to taper by 5mg instead of 10mg...

 

[Cat-a-Tonic]

The highest dosage of pred that I have been on was only 20 mg (my GI didn't want me to be on a higher dose than that because I am still undiagnosed). In my experience, it kicked in very quickly - within about an hour I had more energy, and within the first day I noticed my symptoms easing. After a few days of pred I felt like a million bucks! My stools were more solid, almost to the point of constipation (I normally have diarrhea), my pain was barely there and I had a big appetite and a lot of energy. Too much energy, in fact. It's easy to overdo things when you're on pred, as I learned the hard way. One day I decided to clean out our back bedroom (the room where we threw all the stuff that had no place, so the room was piled high with junk). I cleaned the entire room and took 8 boxes of stuff to Goodwill. The next day, I was in a ton of pain and miserable. So even if you get a rush of energy from pred, don't overdo it or you may pay for it the next day!

Since I was on a relatively low dosage, I didn't experience a lot of side effects. Insomnia was the only side effect that I noticed - make sure to take your pred first thing in the morning, so that the energy burst has mostly worn off by bedtime.

 

[Christy]

From my experience, you will feel fabulous for about three days ~ absolutely, totally smashingly grand & fabulous!!! Then the lack of sleep will begin to take it's toll and the mood swings will kick in ..... of course, your mileage may vary.

 

[chefcutiepie]

i got my pharmacist to start me on 60mg, it does seem a tad high to start at 80mg. a burst of energy may be a good thing right now as we just moved into our first home and there is stuf everywhere that needs to be put in its place. i hope this helps and i really hope i dont get a sollen face! thanks for all your advice guys, keep it coming!!!

 

[xoxava]

i was on 80mg pred for 5 months! the only side effects i had were the acne, facial hair (ew), and a little weight gain. i got a script for my acne and it cleared up immediately. i had joint pains and hair loss, but the doctor couldnt tell me if it was pred related or not. 3 months later my hair is still coming out in wads and i have visible bald spots. BUT pred did help as it shown in my most recent colonoscopy so i guess ill take those things for getting stable.

 

[tummygirl]

I finally tapered off prednisone in September.

The bad: My face got very puffy, and hairy, but it's almost back to normal now. I gained weight - probably because I was very hungry and eating low fiber. I caught myself over-reacting to things...

The good: I felt better - no stomach pains or associated issues AT ALL. It really helped me function normally. Which was worth the bad stuff.

 

[vonfunk]

On high doses I get moody, there are some commercials that cause me to shed a little tear. And I have to pee constantly, which is a cruel joke due to my tendency to get dehydrated easily.

 

[ameslouise]

There's tons of info on here about Pred and side effects. It really affects everyone differently. You'll probably feel GREAT and want to eat everything in sight, but best to stick to the lo-res diet. The pred is just masking the symptoms and not really curing it, so you still want to be careful with your diet.

I also agree about tapering once you get to 20 or 30 mg. Double check with your doc.

Good luck! - Amy

 

[chefcutiepie]

So i am having very mixed feelings in regards to the script that my family doctor has given me. when i went to see him three weeks ago he would not even put me on pred because he said it is only used as a last resort... which i found super confusing because everything else i have read points towards the fact that it is used pretty much right from the start. the specialist who had diagnosed me actually recommended i start with pred but i declined in order to give pentasa a shot where is has little or no side effects at all. so today i got back to my doctor and told him about the hard three weeks i have had and he told me even though he hates to write the script for pred that he would do it for me. so he wrote me it and started me off at 80mg , which appeared to be high in my mind. after talking with some of you and talking to my father in law who is a pharmacist i realize that 80mg is mostly for very very severe flares. so i have made the decision to start with 50mg. now back to the doc advice, he has me tapering down every three days by 10mg. is this normal? i am going to call my specialist tomorrow to get his opinion but in all honestly with my experiences i have had with the doctors i trust all of your opinions alot more. I feel so lucky to have family who take int in =to their own hands to research and try to help the best way they can. you really need to do your own research and not just rely on doctors, especially gp's ... most seem useless! anyways thanks for all the advice and keep it coming... having a frustrating night here ! hope tomorrow is better!

 

[ChefShazzy]

Oh yeah, also; take your pred very early in the AM.... or else, you'll be up all night.

 

[tummygirl]

I think you are wise to call your specialist. It's good to get more than one opinion when you're dealing with a serious drug like prednisone. However, you may need to act quickly, especially if the doctors have evaluated your situation to be severe enough to warrant 80mg. So don't wait too long for that specialist opinion.

A year ago, I did NOT want to go on prednisone, because I knew all about the side effects.

But, sitting on a hospital bed, with an iv in my arm and a nasal gastric tube pumping some sort of gross-ness out of my stomach... with more than one Dr. telling me it was the best thing to do; I accepted it.

I had experienced the same pain and vomiting more than once, and I managed to deal with it at home on my own for a while. So I thought "do *I* really need a drug like prednisone?"

However, it was explained to me that, even if I thought I could deal with it on my own, it was dangerous to do so, because even though I didn't acknowledge it... I was sick, and there was a potential for a bowel perforation, blood poisoning, etc.

Hope you hear from your specialist soon.

 

[chefcutiepie]

i am def calling my specialist... my gp i have deemed basically a moron and useless. before i was diagnosed he gave me cymbalta ( a drug for severe depression) because he thought the fact that i had anxiety was causing my tummy troubles. he told me it was non addictive ... he really has no reason to give me 80mg.. i feel that he just doesnt care at all. i am currently looking for a new gp , just not very easy to find one, especially one who actually cares.

 

[BLM]

Hey Megan, WOW 80 mgs!! Thats high!! I just spent a week in the hospital with crazy pain and irregular body temps and a pretty bad flare, my blood levels were all over the place and they started me on 50mg, then 40 for two weeks and now down to 30 until I get in for my next Remicade treatement and then they will continue to taper down. I think 80 is the highest you can be put on. I would definately double check with you GI, perhaps he will suggest a different plan.

 

[crohnicaly stinky]

80 seems very high. Pred is not good for you and the lower the dose you can get away with the better. Pred is the normal way to get a flare under control, so it is usually the first step. It's like calling the fire department, they smash windows and doors they get everything soaking wet but they get the fire out so you can pick up the pieces and move ahead.

I was put on 20 MG of pred and tapered to 5 and then started Lialda, (same active ingredient as pentasa). I started feeling way better within a couple of days of starting pred, I felt great. But I had short temper problems, short term memory problems and generally my emotions were screwy.

Good luck and I hope you feel better!

 

[vonfunk]

My worst flare that lasted for 6 months I was put on 60mg, tapering 5mg a week, I held at 20mg for a month until I saw my GI, and he had me taper down 2.5mg a week to my maintaining dose at 10mg.

 

[Mejay07]

When I was first diagnosed, my doc was having trouble getting my flare under control, so he put me on 40mg of Pred, I couldnt imagine taking double that dose. Then after a few weeks started tapering off. as soon as I got to about 10mg a day my symptoms started to creep back up. so I had to stay at about 15mg a day to manage my symptoms, but he didn't want to leave me on it long term so we were discussing other options.
But, I hated being on this drug, I felt good symptom-wise but I don't know if the side effects were worth it for me. I was jittery all the time, I couldn't sleep, I would get horrible leg cramps, I was hungry all the time, the mood swings, but the worst thing for me was pred decreases your immune system so in return I developed a fistula and very very painful abscess, which had to be surgically drained. After that my GI started me on remicade and I was able to taper off the pred completely. It also has long term effects in regards to bone density loss i believe, and osteoporosis runs in my family so I don't want to take any extra chances

Good Luck

 

[chefcutiepie]

going pretty well for now! feeling good but am moody and sleep is a bit off... trying to fight the urge to eat more than i know i need! really want to eat junk food but wont toucch it cause i dont want to swell. i went to see my GI yesterday and he changed my script for me. im not on 40mg for 2 weeks then tapering down by 5mg each week. felt much better after seeing him.. he took the time to answer all my questions, finally a doctor who cares they actually exist , yay! well its off to tease myself by watching the food network!

 

[chefcutiepie]

pred = major mood swings. wowza

 

[ameslouise]

Yes, warn your family that you will not be yourself for the next couple of months! And watch out for road rage! When I was on 40 mg, I felt like I should NOT be driving in traffic at all - I wanted to kill someone!

Good luck - glad you're feeling better about everything.

-Amy

 

[Astra]

Good Luck Megan
Pred affects everyone differently, I didn't get any mood swings and felt very energised, wizzy and speedy! The only side effect which bothered me was insomnia, but instead of worrying about it, I just went with the flow. So what if I couldn't sleep, I was off work, so slept during the day!
I understand your frustration with the GP, bearing in mind these peeps aren't specialists, 80mg is a tad high!
If you find yourself getting symptoms back when you taper, up the dose by 5mg and stay on that for a month, Pred needs time to heal inflammation at high doses.
All in all, I took Pred for 10 months, it saved my life, and I feel much better now.
I am glad I'm off it tho, only cos my clothes don't fit!
xxx

 

[Mrs. V]

Yep... 80 does seem high to me.

I would also get a second opinion... but don't taper or change your script yourself.

Everyone reacts differently to to the evil drug. My reactions seem less this time around (started at 50 and tapered and now back at 50 - don't ask :S )

I am also far more sick this time around. I feared Pred. But it helps. It really helps.

Which really sucks... because the drug does not love me.

 

[BLM]

Megan, glad you got some clerification....40mg is much better. I have sleep problems on it too....but definatley loving all my energy. Trying not to eat everything in sight is more difficult the more Im on it. I figure, Ive lost so much weight being so sick this year....a lil pred weight isnt going to kill me. I hope you continue to feel better, and I thank God for Pred, it seems like its the ONLY thing that has really got things under control for me this year.

 

[Deleted member 81255]

I never had any symptoms from Prednisone. Started on 40mg for four weeks then tapered by 5 mg. every two weeks and I'm currently down to 12.5 mg. I never had any symptoms other than hot flashes for the first week, ringing in my ears and a numb feeling face which made me want to take it at night which is what I now do. I get no mood swings or sleep disturbances like others get. I guess I'm just strange like that....

 

[chefcutiepie]

really not being able to sleep is starting to get to me big time! had a meltdown on my mother yesterday over something silly. also having some tummy troubles again.. perhaps its constipation? perhaps i ate alittle too much or something.. its so hard not knowing what is going on inside my body or what to expect ! once again thanks for all the posts... you all really help alot!

 

[crohnicaly stinky]

really not being able to sleep is starting to get to me big time! had a meltdown on my mother yesterday over something silly. also having some tummy troubles again.. perhaps its constipation? perhaps i ate alittle too much or something.. its so hard not knowing what is going on inside my body or what to expect ! once again thanks for all the posts... you all really help alot!

There is a lot of debate back and forth about diet and crohn's. What is pretty much agreed on is when your in a flare up, like you are, certain foods are a no no. For me anything greasy, like a nice Italian sausage, just kills me in a lfare up. When I'm not in a flare I can have one and it doesn't bother me enough to care. So you could certainly have eaten something that right now does not agree with you. Popcorn is one that is gives a lot of folks problems. A lot of sugar can be bad too. Candy, cupcakes, etc.

Good luck and I hope you feel better soon!

 

[chefcutiepie]

i will start tapering today, is there anything that I should expect to change?

 

[Deleted member 81255]

My pain has started to return a bit and I'm less constipated since I've started tapering. Oh ya! And my Asthema has started to come back. Nothing super major Crohn's related though.... Good Luck!