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Predisone?

littlepinkstar

New member
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Hey!

My lungs have really never been that bad. I know that a lot of CFers have it a lot worse than me so I never complain. Well, my grandma always used to say. "Don't say something bad, because then it will happen." And she is a strong believer in that. Well, when I got done with my IV anti-biotics, my PICC nurse was telling me that I am lucky because a lot of CFers down in the bay area (and probably nation wide) are Predisone dependant. Well, I just laughed and said.. Yeah, Predisone.. I'm not THAT sick. Well.. It came and bit me right in the butt!

So enough of the story, I will cut to the chase;
The doctor has started me on Predisone.. we just need to get the perscription filled. Does anyone know any side effects of this medicine? The more common side effects that is.. And, what exactly is Predisone for? Are you happy with the reaction this medicine gave you? I really don't like starting new medications because then it's more side effects to worry about, and all that jazz. Anyways, sorry to have to bore you with my story.. but I had to get it out. Please help me out okay? Thanks.

Oh yes! I am only going to be on it for <b>two</b> weeks, and then they are slowly weaning me off of the medication because I guess you cannot quit right away.

<img src="i/expressions/rose.gif" border="0">
 

anonymous

New member
Well, if you are doing ok and just taking the prednisone for a boost I would be expecting a huge energy rush. Obviously if you are really sick, the energy rush won't be as apparent. But I am on the go nonstop when I am on prednisone. It's kind of cool.

also, if you have CF related Diabetes, be prepared for your blood sugar to start acting crazy. It usually goes really high and you have to take extra insulin.

and not so much while on it, but in the following weeks you may break out some (acne).

These are the things I have noticed (along with the feeling better)
 

supermanfan

New member
Prednisone can also cause you to retain water. I take prednisone for anti-rejection reasons. It's quite wierd that sick people take it to help them (nore than CFers, but asthma, and other lung conditions) yet I take it to help me with rejection. I know it works on your white blood cells, but I don't understand it all..

Anyways, yes as stated above becoming prednisone diabetic as I did at first after my transplant when my dosage was high, but I only had to cut off the coke... I didn't become insulin dependant
 

anonymous

New member
Prednisone is a pretty powerful steriod, and as such, has a bunch of side effects. It is also a very strong anti-inflammatory, which is why it is being prescribed. As said earlier, if you take prednisone, you may start feeling great - in my experience this feeling hasn't really translated into higher PFT's, and goes away pretty quickly after I stop taking it.

I've only had to use it a few times, and generally try to aviod it. It is pretty nasty stuff, and the side effects can be serious. Here is the link to the Medline (NIH) page about it. It doesn't offer much CF specific information... if you have concerns, I'd highly recommend talking to your doctor before taking it - Even if you plan on going ahead with it, I think its a pretty good idea to know what you're taking, why you're taking it, and what it is supposed to accomplish.

Chris (cdale613 - forgot to login)

25 w/ CF
 

anonymous

New member
forgot to add the link! sorry! <a target=new class=ftalternatingbarlinklarge href="http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a601102.html">http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a601102.html</a>

Chris
 

anonymous

New member
Prednisone as mentioned is an anti inflammatory. I used to take all the time when I was little, and ended up going a decade without taking it ... then my doc put me on a months regimine of predinsone. So just cause you are on it, unless the doc has said it is permanent, it may not be an all the time thing (just a little bit of the bright side to look at). When I took it last year I was having a hard time taking full deep breaths, I kept feeling like I was being cut off when I would try to breathe deep. I took the prednisone and it helped greatly. I was able to breath much easier.
Side effects if you are diabetic it will DEFINITELY affect your Blood Sugars (speaking from experience- I have CF related diabetes), due to raising your blood sugar you can have symptoms of that (which though not directly caused by the prednisone are a result of taking it). Just a possibility if your blood sugars get messed up. I had more energy and was hungry all the time. I am hungry alot now but I could have eaten non-stop when I was taking pred. due to that you can put on some weight, but that isn't really a bad thing for CFers.
Best of luck to you and as Chris said if you have any other questions definitely ask your doc.

Best of luck,
Lindsey
23 w/CF and CFRD
 

JazzysMom

New member
I used Predisone for the first time in May 2005. My airways were just about completely closed & we didnt know why. It worked wonders. I was pumped with IV form for the first week then put on oral to be tapered off after being home a few weeks. I did get acne which was more like a rash looking acne & I dont have CFRD, but my sugars SKYROCKETED. One nite my sugars were 500. I thought the nurse was going to faint. I was on insulin for the time I took predisone. My weight was 22 lbs below my normal so carb counting wasnt a good idea. The insulin worked once it was adjusted since I was high for awhile. It also gave me terrible sweats at night........would sweat right thru my clothing & drench me. Plus with all the other meds I stunk to high heaven from the sweat & always had to wash up. Pros/Cons, but it does work. Hopefully you will only have short term use.
 

abloedel

New member
I flat out refuse to go on it anymore. For me it helped initially with feeling like I could breath again, but it made me very manic. Very happy when I was happy, and when I was mad, (and believe me, I got mad a really stupid things while on it), I felt like I could literally kill someone, and that scared me.

For me, the side effects were not worth the benefits...but I know others have had great success with the prednisone.
 

anonymous

New member
Hey,

I'm on prednisone sometimes too. As everyone said, it's an anti-inflamitory, and they use it open your airways. I get acne too, my body and then face when I come off it. I get hot sweats at night. It is a steroid remember, and I do get very anxious when I'm on it, even having bad dreams.
I eat like a pig while I'm on it. I mean I crave food ravenously.
If I'm on 30 mg or more, for over 2-3 weeks, I do gain alot of water weight, specifically in my face. But it goes away after a few weeks after you are done.
Basically it's a pain in the butt drug!! I only use it when I absolutely need it. It's definately the worst drug I've ever used, but you need it sometimes.
Hang in there...and drink alot of water! That will flush it out of your system quicker, reducing skin side effects, and help with the hunger it causes.
Christian
 

JennifersHope

New member
I am someone who takes Predniosone every day..30 mgs and more when I am sick.. I have no choice it is take them or I will die....I hate it... hate it hate it.. My face is a big full moon and my belly looks like a ate a watermelon whole... it is shrinking my bones, increasing my blood sugar and my blood pressure... and if I take enough of it I am ready to bounce off the wall...

LIke now I am on 80mgs. I am antsy.. anxious and still sick.. Only difference is I don't show inflamation on my lungs....... cause I am so immunosupressed that I dont get inflamation

Steroids.. take them long term only if you are fully aware of the side effects...

Jennifer
 

anonymous

New member
Oh Jennifer,

I'm so sorry. You sound so fed up with them. That's really the only way to describe them. They suck they suck they suck!!!! I've never spoke to anyone who get the anxious feeling like me. I get it on 30 mgs, and horrible nightmares and night sweats. Have you ever experienced that?
Hang in there! Hugs to You!

Christian
 

anonymous

New member
I also am on Predinsone everyday and i agree with the two of you it totally sucks. i can't imaging being on 80 mg, that must be so hard. i was on 40mg since i was 4 so i never knew i had any of the side effects but my face was very very round and my belly was also round. now my doctor put me on sporonox and has slowly lowered my predinsone to 10 every other day. i swear i look like a whole other person! i lost 15 lbs but i also got very depresses (another side effect of going off too quickly) and had to go on meds for that. but two weeks should not be that bad. i just went on a week of 50 and nothing happened. just try and not take it long term.

Sue 23w/CF
 

JennifersHope

New member
I think I am more fed up with life in general right now...I am sure the steroids are adding to the mix I am on 90 mgs right now...... Yes, I get night sweats.. I never associated them with the steroids though....I don't really normally get nightmares...but sometimes... and then I just pray and it goes away.....


As far as the anxious feeling that is one of the most common side effects of it... Their is something called steroid pyscosis... where you start to get weird thoughts and stuff with it.

Jennifer
 

JustDucky

New member
I used to be on steroids a long time ago and on high doses because the docs thought I had vasculitis in my brain, so I was on massive (8 mg of Decadron, which is like taking 160 mg of prednisone) doses of steroids and I literally looked like a stay puff marshmallow man. I had the sweats, the high sugars and was moody as hell! I also retained water like a sponge, went on Lasix to try and get rid of the 20+ lbs of flluid, when I walked, you could actually see my feet jiggle with every step. I was so upset...but I was on those doses for some t ime before the doc dropped the doses, ultimately I came off but it took a long time. If you are on them a short time like yourself, you will still feel side effects, not to the extreme that I described to you- those side effects come with chronic or long time steroid use- you might feel like you have alot of energy or get moody or get the sweats. But, on t he flipside, they do work and you will feel better.
Hang in there, I will be thinking of you....Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

luke

Guest
alyssa,

Prednisone does have side effects but they shouldn't be to bad as long as your not on it long term. We always need to be concerned with side effects but the most important thing is to breath. If you ever have to go on it long term then side ffects become a concern and you will need your doctor to discuss it with you. Hope you feel better

Luke
 

Emeraldmirror

New member
I took it for like.... 2 -3 weeks when i was 16 and it did make things a lot easier at the time.... but they said that ... it's god for you.. but unless you absolutly need it it's not because it little kids it can stunt growth, and it's bad for your bones and all this stuff.. so i was like that's ok.. i'll keep my bones and such... and i don't think i've been back on it since then... oh wait i did once accidently take two within an hour thinking i was taking something else because i was on a cipro, prednisone combo and i had to take them at different times... basically i felt really heavy and didn't want to do anything but sleep... it was weird..


Ashley 21 w/cf
 

anonymous

New member
For short term... a few weeks to even a month Prednisone doesn't have a lot of side effects. Weight gain, hot flashes and mood swings...thats dose dependant though. I have taken prednisone many times and only had bad side effects when on it for months at a high dose. However I have hardly any lung damage most likely thanks to all that time on prednisone.

Medrol on the other hand...especially solumedrol via IV *shudder*
 
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