Prednisone: The Good and the Bad

[jyarmo]

Prednisone is one of those drugs that everyone suffering from Crohn's disease tends to get put on eventually. We all have our stories regarding prednisone, so I thought we could share them with each other.

I've been on Prednisone three or four times, for around three months each time. I was always put on Prednisone when I was at the height of a bad flair up period, and the drug did help by controling the severity of my Crohn's symptoms.

In terms of side effects, I did gain some weight, although I do not think it was a huge amount. At the time, I was fine gaining weight, since I had lost quite a bit as a result of Crohn's. I was often hungry and was eating like I had never eaten before! I was also rather short tempered while on Prednisone. This could have been is part due to the other major side effect of the drug, the one which I noticed the most: lack of sleep! I had never had a true "all nighter" until I was on predinsone. While it was quite a shock at first, I learned to enjoy my ability to stay up and found that I was able to be quite productive. I used to do my school work while up all night and caught up on a lot of reading!

How about you guys? How long have you been on the big P? What side effects have you had to deal with? Has Prednisone been helpful to you?

 

[ReeRee]

I've been on it for the best part of 16 years without stopping. Well, we stopped it once, took 3 years to wean me off of it, and still my heart almost stopped. Turned out it had caused Addison's Disease, which is atrophy of the adrenal gland. The adrenal gland is a very lazy gland. Prednisone does what the adrenal gland is supposed to do so your adrenal gland decides to take a 'nap'. The longer you're on Prednisone, the deeper your adrenal gland 'sleeps'. Turns out mine was 'asleep' for so long it died. Now I have to take Prednisone every day for the rest of my life just to keep my heart going. It's only 5mgs a day, but still, I hate this stuff!

Other than that I had the usual side effects when I was on heavier doses of it. My least favorite being that "MOON" face. Then there was the nightmares where lizard people chased me endlessly. Oh and let's not forget aggression and rage and mood swings. It also causes me to have horrible acne, which I never had as a teen, but the second I turned 30, BAM, zits everywhere.

Oh I almost forgot what it's done to my bones. I need hip replacement surgery but we're putting that off as long as we can. I have Crohn's related arthritis too. I'm presently having all my teeth pulled because of all the damage it's done to them over the years.

I'm not very fond of Prednisone, but it does do the job for CD.

 

[Judyc]

I'm not a lover of prednisone. EVER...but at times it was a quick fix to many bad flares but the weight gain, the MOON face, how about the "unsightly" black hairs growing on your face!! The insomnia I still have from it. I said I'd never go on it again, but before Oct's surgery my doctor wanted to try it. I agreed but knew this drug never takes care of narrowings and partial blockages and adhesions. She put me on the other one, bud..... something....it boasts "just like pred without the side effects"..well, sure no side effects but the drug didn't help me at all and I had just gotten it from Canada, so much cheaper!! So she started me on a smaller dose of Pred and it, too, didn't help, I needed surgery. I went into the hospital for "bowel rest" and then she gave me huge doses of it and again, to no avail and shortly after that I needed the emergency surgery but she continued with the huge IV doses of it. I couldn't look in the mirror, my face was so distorted from it!! I refused all visitors and my face is still a little puffy after months of being off of this drug. I guess it has helped many and did keep my disease in check for the fifteen years I was on 7MG a day of it. I'm so thankful my eyes and bones are OK. You'd think after all these years, they'd have better drugs for this disease. The mood swings were awful, for sure. I was lucky I didn't get the acne. But that MOON face is the worst in my opinion. I was out one night with my friends and saw an old school friend, hadn't seen in years, he was drinking and said, "Judy, how could you let yourself go like this!!"....Well, I ran to the bathroom and cried while my good friends just about beat him up!! The things I should forget..........

 

[ReeRee]

how about the "unsightly" black hairs growing on your face!!

I prefer to think of them as stray eyebrow hairs...LOL Yeah, I forgot to mention those, thanks. I get obsessed with plucking them out. My best friend and I have made a pact that if one of us is ever incompacitated and can't pluck them ourselves, the other one will do it...hahah. That's a burdon off my mind.

I have the insomnia too. But I have that from the methotrexate too so it's hard to say which one it came from.

I hope your friends gave that guy a black eye for that comment! How rude! I hate the Moon face thing!!! Absolutely HATE it! I feel your pain sister friend!

 

[jyarmo]

It's true Judy C (regarding "You'd think after all these years, they'd have better drugs for this disease"). Every time I was put on it the doctor said something along the lines of "it's a terrible drug but it gets the job done and there isn't anything better out". No fair!...who on this board is becoming the scientist who discovers the side-effectless Prednisone?

 

[Karen]

I HATED THIS DRUG ... Well, I mean is that when my hubby was on it he was a BEAR and so I am VERY GLAD to have him off it & so he is taking something called IMURAN and that is going much better so take it from me & that is " DO NOT POKE THE BEAR "

 

[Rob17870]

Did anyone else have "night-sweats" while on prednisone? If i was on it almost everynight I would wake up in puddles of sweat. Id say in a given night i would lose 2-3lbs of water weight (not counting urination).

 

[Jeff D.]

I had all of night time problems with night sweats and waking up excessively. But other than that nothing much. I gained 10 pounds though but that was because I worked out everyday.

Jeff

 

[mikeyarmo]

Did anyone else have "night-sweats" while on prednisone?

I just remember now that when I started taking pred in the hospital (50mg by iv) I used to also wake up to a sweat-filled bed. The lack of sleep during this time I knew was due likely to the prednisone, but I thought that the sweating just may be due to sleeping in a different bed and being too warm or something in the hospital. I did not really believe that though since I used the thinnest blanket available, but did not think it could have been due to the prednisone. After they reduced it, the sweating stopped.

In the past I also faced problems with sleep. I think the worst was when I started prednisone I was on a liquid diet for about a week and I think it was made a lot harder by the prednisone. Man did I want to eat! I think that actually made a liquid diet much easier to handle later on though, as no hunger I have faced compares to that one week.

 

[MikesAngel21]

Ive never had the please of being on this drug.. sounds like I should be glad I havent. Sorry to hear its such a horrible one. is it some kind of steriod or something?

 

[mikeyarmo]

A steroid is exactly what it is. I think that at lower doses it is not too bad... but the problem is you are usually put on a high dose at the beginning. The worst part is that you have to be taken off of it slowly, so it can take quite a while to get off of it.

 

[Rob17870]

Ive never had the please of being on this drug.. sounds like I should be glad I havent. Sorry to hear its such a horrible one. is it some kind of steriod or something?

Prednisone was the very first medication I was put on. I am just curious to what you started with and are taking now.

 

[Sparrow]

I've been on it a little over a year now and trying to get off it asap with no help from being sick most the winter with pnemonia to where they wanted to up the dose for a short time just when I was getting off it. Anyhoo I love it and hate it at the same time, just because it seems to work right away on the CD, but I've had almost every side effect possible lol. Moon face, sweating buckets, tons of energy, and never sleeping, wanting to eat all the time, and hey girls they make Nair for almost every part of your body
So now I'm back down to 2 and a half tabs a day and hopefully getting off it very soon!

 

[mikeyarmo]

It really is a love/hate with this drug more than anything else I have been on. I just wish the short-term relief was not followed by such a slow process of getting off of the drug and dealing with the side effects.

 

[ReeRee]

I HATED THIS DRUG ... Well, I mean is that when my hubby was on it he was a BEAR and so I am VERY GLAD to have him off it & so he is taking something called IMURAN and that is going much better so take it from me & that is " DO NOT POKE THE BEAR "

Karen, I just got to do this.......

Oh geez the night sweats! I have that problem with Prednisone and with the Methotrexate too. I hate it. Wake up in a water bed and I don't even own a water bed..lol. I wasn't a very pleasant person to be around either when I was on the higher doses.

I'm like Mike, I have a love/hate relationship with the Big P. My doc knows that if I actually ASK for Prednisone, I'm really hurting bad. It really does help, but the side effects are awful.

 

[Jenni]

ughhh night sweats were really bad for me! bla! and of course the moon face was terrible. i remember i hadnt been to school for a few weeks and the last time everyone saw me i looked really sick and very skinny. well the day i came in was the day my face had swollen a whoooole lot. and i remember in the middle of class this guy says "OMG jen why is ur face so HUGE?!!!" and i remember the whole class turning to look. my best friend just told them "shes on medicine u idiot." and nothing else was said. but yeah my face got incredibly huge! but that wasnt the only thing to swell. my legs, sides, hands,arms,...basically my whole body ended up huge! my clothes didnt even fit! i also had hallucinations. i would think cartoon characters or somethning equally as crazy were gonna kill me! i remember being hungry all the time. i remember zoning out for no reason and not even being able to talk. or "freaking out". ugh i felt so weird! i didnt even wanna leave my house! my own family didnt even recognize me! but since then, ive lost like all of the swelling which id say was probly about 50 pounds. but yeah i kno prednizone works, because it does, but i would avoid it at all costs its a last resort!

 

[Mozam]

Prednisolone (what we call it over here) is the drug that I was put on as a young boy. I vaguely remeber getting Flagyl and Mesalazine later on in my treatment, but the big P was the main drug, no doubt about it. When I was really bad I was on something mad like 60mg a day. I spoke to a bodybuilder chum of mine when I was in my early teens and his jaw just dropped when I told him that's what I'd been on.

My weight when I was off the big P was always really poor, so when I was on it it ROCKETED - I ate like a horse, which was a good thing, but of course suffered the mood swings, moon face, and thinning of the bones. I've been warned that in 10 years or so my bones will have deteriorated worse than an average 40 year olds would have. A lovely prospect.

I have mixed feelings about Prednisolone, I really do. It's helped get me where I am today, which is relatively healthy, and alive. However, I know though that the creaky bones first thing in the morning and the fact that in ten-fifteen years time I may not be physically in the best shape due to it are reasons to say I hate the drug. I also worry when I hear some of the stories on here, and some of the horrors that other people go through.

I would say that for me, it's done me ok - but I for one wouldn't be sad to see the back of it if they ever found a better, safer medicine that didn't have the same horrible side effects. To those of you who're on it now - I hope it does you a good turn, because the good turns can be fantastic.

 

[Kossy]

Pro's:
+It helps me go into remission....

Con's:
-To much facial hair.. I look like chewbacca by the end of the day.
-It gets to me mentally when I first go on it... I snap really easily.
-It screws with my eyes
-It makes me look like the long last brother of Alvin and the Chipmunks.
-The munchies
-Weight gain
-A lot more torn, strianed muscles, and hernias
This list is going to go on forever....

So in closing.. is it with it? Yes... but just BARELY!

 

[cagfire]

I hate cortisone drugs.

I've been on:

oral chemotherapy
all the sulphur based drugs
flagyl
cortisone
immuran
lomotil/immodium
plus lots of others

When I was on cortisone I was on 100mg dosage. I got off this as quickly as I could but I think it still took over 6 months to wean off.

My crohns is very aggressive. I can have a resection and it can be back within a few days. My last resection in 2003? within a day I was having joint flare ups.

Although I have been saying in various posts that I don't take meds, I'm not a patient who doesn't at least consider the pros and cons of a situation. In discussion with my really great lady GI we decided to try oral chemo. Boy did I react to that...bad raised welt type rash, the nurses had trouble getting blood for my weekly test so I was soooooo glad to get off that one.

Cortisone came along at a time when my B12 stores depleted completely so I had some psychosis episodes from the combination of no B12 and cortisone combined! Moon faced, round, tender, psychotic, aggressive, boy was I fun to be around.

I list cortisone as an allergy now to make sure I never, ever, get it without my express consent. I can tolerate the injections for the joint pain, but nothing oral or IV.

 

[btcrv]

Didn't you mean the Bad and the Bad of Prednisone?

 

[cookey]

I've always said to many, Prednisone is a deadly drug...that I would not recommend it to any one, but in all fairness it does help in controlling our Disease. Long term side effects are the worst. I had blurred vision, hearing loss, added facial hair, bulging eyes, dizziness, headaches, severe cravings, weak muscles, red blotches under the skin, and so much more for the 18 yrs that I was on and off of that drug. It definetly has it's pros and cons...more cons then pros I would say, when taken over a long period of time.

 

[Calum]

I spent 4 years on prednisolone and had the usual effects of the mood swings, moon face and thinning of bones. Together with pred and poor absorption of nutrients I also suffered from crush fractures to vertebrae’s in my spine and currently have to take alendronic acid for the promotion of bone growth and calcium supplements. Sorry, can't add any good points because I didn't experience any.

Calum

 

[Jenni]

ugggh lately i have had the worst joint swelling from pred. like i kno ur cheeks and stuff swell alot cuz i had that wen i was on 60 for all those months but like im talkin like my shoulders and this "ball" below my neck keep swellin and ahh its so painful! but its not all the time its really weird. haha just thoguht i would share

 

[meghan510]

The Bad

I have been on prednisone for about 4 months now, started at 40mg and the doc finally just let me go down to 30mg. I dont think that it really did anything to help my Chron's symptons but the docs say that the narrowing has opened and I have less inflammation. The worst part of this drug for me was the weight gain and my larger than life face - my face is soooo puffy and I cant even stand to look in the mirror. I was very concerned about this at first because of the vanity side of me but then it comes to a point where me getting healthy is more important than the way I look and if other people make fun if it oh well! Anyways I will be very happy once I am off this drug! Everyone else hang in there too.

 

[andilynn09]

I have only been on the big P for 3.5 weeks, and started noticing the side effects in just a few days. Night sweats, moon face, swelling in ankles, unable to sleep, and always feeling hungry...UGH. So far I have been doing okay and have started tapering off already as I have also started on the Imuran during this time. I agree that the pred side effects suck....the worst for me has been the trouble sleeping (when I already work 3rd shift and have a screwy schedule anyway) and always feeling hungry. The moon face and swelling really sucks too, but I know that is more cosmetic and not as big a deal in the grand scheme of things....or so I try to remind myself. At least there is something out there that can help I guess , even if it does cause other problems...

 

[Irishgirl]

ive just started it today taking 8 tablets this week, next wk 7, then 6 then 5 etc. i was on it in january for 6 weeks and i just remember having really bad shakes, but having sooo much energy. its been over 10 years since i have had the energy to want to clean and do things after work - and im only 26

 

[Skinsfan1229]

Ironically enough, I dont have side effects from prednisone and Im on it pretty regularly, probably 80 percent or more of a year.

I've even lost some weight on prednisone, while everyoen complains of gaining! or moonface!

 

[cookey]

I don't know any person who likes to be on Prednisone. I wrote a very lengthy blog about this very tiny deadly pill on my other site, explaining what my sypmtoms were, also begging Crohnies not to take this steroid...unless they absolutely had to. Thirty years ago, Prednisone was the only option for me. They didn't have all these new medications they have today...and I sure wish they had. Prednisone for being the tiniest pill, sure has big effects. I was on it for 13 some years. Long term side effects are the worst. While being tapered off this drug, that's when the fun began....as if it wasn't enough while being on it, I became allergic to many and most things, experienced two Grand Mal Seizures, to this day some doctors disagree as to Prednisone being the fault of that,...Cravings had to be the worst, I still have Cravings to this day..and I've been off it now for 17 yrs. I experienced loss of hearing, facial hair...fun fun, agreeing with Ree...Major Gum problems. Moodiness, was a very huge side effect. My biggest dilema right now is major Arthritis in my left knee. As much as I not a fan of this medication, it did help in controlling my condition, with a price to pay.

 

[Skinsfan1229]

I have 15 years or more with experience with prednisone, first with my asthma, then with my Crohns.

Even after all that time my DEXA scans came back normal until about 2 weeks ago, showing osteopenia, early stages of osteoperosis, but only in the spine and hips, and at the age of 21, how awful is that...actually doesnt bother me, I wont be doing construction or anything like that again regrettably but for the best.

Not everyone experiences side effects from prednisone. Entecort(budesinide) is exacly like prednisone except less side effects and doesnt affect the bones as much.

Entecort tends to be a better maintenance drug because of the less side effects, and for some people it just cant get the job done like prednisone of coming OUT of a flare.

20 to 30 mins of daily sunlight can give you the correct amount of vitamin D, which vitamin D allows us to absorb vitamin C for our bones....