Prednisone

[Cordillia16]

OMG I hate this drug! Aside from taking away SOME pain and swelling and giving me more energy, it hasn't even really worked. But it has given me a wonderfully round face, beautiful acne and an lots of pounds.
Has anyone else had similar experiences with Prednisone? Does anyone any recommendations of a different drug? I asked to switch to Endocort, but my GI doesn't think it's a good fit because of where my CD is.
Grrrrr

 

[dreamintwilight]

I have managed to avoid taking Pred thankfully. I've been on Entocort twice now and it's worked wonderfully for me. My Crohn's is located in the terminal ileum. It did totally mess with my skin though. And I had mild insomnia.

 

[aliciars]

I feel your pain... I HATE prednisone. I have 6 days left of my current taper, and I'm refusing again for a while....last time I was on it for almost 6 months. Today, my doc tried upping my dosage again and I told him no way. He's also passing me off to one of his partners, as we just aren't working well together any more .... different issue. But, I did ask him on the phone point blank...."What else can I take to stop the flare besdies Prednisone?" He said entocort and....something with an m....mesa-something??? He said the M one has some bad side effects. Oh you mean like the 30 pounds I've gained on prednisone and the horrible headaches I have every day, along with the flu feelings as I taper down, and joint pain once I'm done....those side effects????? UGH UGH UGH.

YES. I HATE PREDNISONE. (If I got any relief maybe I'd be a little more tolerant, but I bleed right through it all.....sigh).

 

[Sherby]

Prednisone is such a strange drug!! I am having great results at the moment with it and I LOVE it. Prednisone makes me feel euphoric. Having trouble sleeping. I wish the side effects weren't so extreme. Been on 30mg for 4 days, with relief of symptoms, tapering to 20mg after 5 days.

I am SORRY to hear of your discomfort. In the past when I was on it, my face swelled up like a balloon and yet my body weighted 90 lbs. It was uncomfortable and I looked bizarre. I know your pain.

 

[guest3832]

I've been on Prednisone for almost 2 weeks now. I started off on 40mg for 7 days, and have now tapered down to 30mg. I eat more now, and I actually feel healthier and a lot less tired. I have however experienced very bad mood swings and find it difficult getting to sleep at a reasonable hour.

I hope you get some sort of relief soon!

 

[aliciars]

I have learned to take anxiety meds (like Xanax) & sleep aids (ambien) as soon as I start on prednisone. It helps with the mood swings & sleeplessness.

 

[KWud]

Hey Cordillia

I've been on pred for 7 weeks now, Endocort for 2 weeks prior to that (which did nothing for me). I too have a huge moon face (I hardly recognise myself when I look in the mirror) and I've gained 9lbs so far I'm having trouble sleeping and I'm having mood swings now I'm tapering (my poor kids are getting me growling at them all the time lately ). The drug did wonders for my pain though, I could hardly walk around prior to taking it. I don't know of any other drug that works as well on an acute flare.

Paula
x

 

[spcwife23]

I'm tapering right now, went from 40 to 20mg. I think I was really mean when I was at 40 mg, I was never an aggressive person but on this drug I'm going after everyone.. Now that I'm at 20 mg I have been able to yawn which I haven't done since on the 40 mg dose. I do have withdrawal sysmptoms since dropping but I'm ready to get off of this. I'm scared to find out how much I weigh since being on this, but my face is fat. The headaches are gone, and my head feeling like it's full of water has gone away. I probably really look unhealthy but I'll do anything to get better at this moment

 

[Piatchi]

Im on 40mg atm... ive been very cognicent of my mental side effects... Pred has been a miracle drug so far. I've been much more energetic, im feeling far better. I was upgraded to "severe" Crohns recently because of the large amount of weight i've lost and all of that.

I havent started tapering though... but Pred has had absolutely no negative side effects for me--- ive been able to sleep, ive felt better, etc.

 

[Cordillia16]

Thank gosh other people are experiencing what I am.
At first it was really helping and I could put up with the horrible side effects, but now it's really not doing much so I'm very frustrated with it.
Does anyone know what the long term side effects for taking it are? And how long is long? Is it 6 months of 6 years?
I've heard Endocort is much better than Prednisone. But, like I said, my doctor won't give it to me
I think I definitely need the Ambien though! I hardly sleep now which is such a 180 from before when I was sleeping my life away.

Paula, sounds like we're going through the same except I still have some pain and swelling and other effects of my Crohn's

 

[ThanksP]

I have to take Ambien while on Prednisone. I got to the point where I was staying up throughout the entire night, not able to sleep one bit. The Ambien helped me a TON!

I do notice having slightly higher anxiety but Im not sure if that's because of whats going on in my life (husband is leaving for Afghanistan), or just the Pred.

The munchies are the worst for me. I feel like I am constantly fighting myself over food. I keep thinking I need food but I just ate. Its weird.

Oh and THE MOON FACE! YUCK! The apple belly and Buffalo hump aren't so great either. I'm taking periodic pics of my face just so I can see the difference.

 

[MkAngelo]

They put me on predisolone a month ago after being told I had Chrons,if anything it just gives me terrible mood swings and even worse skin then before.I started on 30mg and they cut it too 10mg within 3 weeks.
Going out was improving untill they cut my dose,now Im back to not feeling good enough to go out and worrying what may happen bowle movement wise if I do

 

[KWud]

Hey Cordillia - sounds like we are going through the same thing. My pain has started coming back to in the last few days. Damn! I've got an MRI scheduled for next week to find out what's going on, so hopefully I'll get some answers soon. Endocort is good but only for mild to moderate symptoms so your probably better on pred when you have a lot of pain. Hope you're feeling better soon honey.

Hugs

Paula
x

 

[Dras]

omg the moon face is killing me.... i've been on methyl prednisolone since middle december now and the gi lowered my dosage by half and said my face will go down in the 3 weeks that followed... Well its been a month and I STILL LOOK LIKE A BALLOON!!!!!!!!!!!! have an appointment with him on the 7th of april!!

 

[spcwife23]

Well I have to go back up on prednisone I'm guessing my body doesn't like the drastic drop, so I'm going back to 40 for a week and taper slowly that way.. Im in to much pain to worry about hating prednisone anymore. I thought I could ride this out but its gettin pretty bad. So today I'm starting back at 40

 

[vonfunk]

2.5 years and counting down until surgery.

 

[TheMrs]

I've been on it at various doses continually for about two years and I have a true love/ hate relationship with it. After working really hard for months and months to try to wean, I got down to just 4mg but this past Friday I had to bump back up to 20 again. Grrrrr.

I do feel better when I'm on it, but the weight gain is absurd. I gained 30lbs rapidly when I first got sick and then another 30 since starting the pred .

 

[carrollco]

I hate prednisone. At 30mgs I become a raging tiger. I'm pissed at everyone and everything. Was able to taper to 20 then 15 but I'm having low blood pressure issues. Almost passed out twice at work. I just started Humira and haven't felt (symptom wise) this good in years. I can't wait to be done with the pred. I don't want to ever take it again.

 

[Grumbletum]

Just been diagnosed this month and my GP has put me on Pred as I was getting worsening symptoms and am waiting for a consultant's appointment on May 16th post diagnosis.
Only been on it 4 days, and it does seem to be working on the pain. I'm rushing to the mirror every morning to see if I've got the 'moon' face, but I think the dose I'm on is quite mild? Only thing I've noticed is feeling a bit spaced out a lot of the time: is that a common side effect?

 

[carrollco]

I never got moon face, but yes, I recognize the 'spaced out' feeling. Kinda like you're on a train heading down the tracks and you don't see any railroad crossings. Straight ahead, don't even think about the stopovers as they happened to quickly to take in.

 

[Grumbletum]

Lol, that's a good description, Carrolco. I feel like I'm just cruising along on autopilot.

 

[ThanksP]

I never got moon face, but yes, I recognize the 'spaced out' feeling. Kinda like you're on a train heading down the tracks and you don't see any railroad crossings. Straight ahead, don't even think about the stopovers as they happened to quickly to take in.

Perfect analogy!

 

[Piatchi]

Its amazing how many of you are struggling with Prednisone. Im having little side effects, even tapering from it. About the only thing is I sleep less deeply... but I usually have to get up due to cramping in the middle of the night anyway.

 

[Laura1006]

I went to my GI today and he is basically saying Prednisone is the only thing that is going to get me back into remission. I have been avoiding taking it for months because I am very scared of the side effects. Not to mention he says there is a chance of "steroidal psychosis"...ugh! I'm very high strung as it is. Can anyone suggest maybe something else I can ask him to take instead of Pred????? I talked him into putting me back on Asacol since that seemed to work better than Pentasa for me. Heeelllppp!!

 

[carrollco]

Have you tried Humira? So far, it's working great for me.

 

[Laura1006]

I have not. Do you think I should mention it to him? I asked him if there was any other medication besides Prednisone that I could take and he just keeps saying..."its only for 10 Days" but a lot can happen in 10 days. My mom was on steroids for less than a week and she didn't handle it well.

 

[ThanksP]

10 days of Prednisone is not bad in the grand scheme of things. Humira is lifelong...or until it stops working. Why not give it a try because Prednisone truly does wonders, even though it can be a bear to deal with. If you can knock the Crohn's back down with the Pred, then you can probably just go back to a maintenance drug like Asacol or Pentasa. And remember, not everyone gets the side effects from Pred or they are very limited. Best of luck to you! I know you are scared but you have to try it to know if it works or not...and being healthy is the most important thing!

 

[Mountaingem]

Yeah, prednisone blows, but it works for me. I use Valium so I can sleep and not be a nervous wreck while I take pred. Also I get the doc to prescribe Clindamycin lotion for my face for the disasterous acne; if things get really bad add benzoyl peroxide 2.5% on top of the Clindamycin lotion. For some reason if I take really good quality vitamins and probiotics plus eat alot of Greek yogurt it seems to help with the side effects,too. Oh yeah and B12 sublingual can help too. Best wishes!

 

[guest3832]

I never could relate to any of the prednisolone side effects others were complaining of until now...MY GOODNESS. :| I am so sick of being kept up late at night, the mood swings, the moon face, the non-stop eating and the dreadful acne. Thank goodness I'll be off this stuff in late June, but even that seems ages away. ): I'm starting to get really self-concious about the moon face. Anyone know how long it takes for the puffy face to dissapear after finishing treatment?

 

[carrollco]

:rosette2:I so relate to the non-stop eating. There are times I feel like an animal I want to eat so bad. My puffy cheeks are disturbing when I look in the mirror and now that I'm headed down on the Prednisone, I look forward to being normal again. You just have to remember that the mood swings are not you, they are the drug. Hang in there. You won't be on it forever.

 

[Mountaingem]

My doctor said the length of time you are on pred equals the length of time for it to leave your system. So like in my case 4 weeks of pred = 4 weeks to get it out of your system.

A good marker for me is when my skin clears from the Biblical-plague type acne, I know it's pretty much out of my system.

 

[guest3832]

:rosette2:I so relate to the non-stop eating. There are times I feel like an animal I want to eat so bad. My puffy cheeks are disturbing when I look in the mirror and now that I'm headed down on the Prednisone, I look forward to being normal again. You just have to remember that the mood swings are not you, they are the drug. Hang in there. You won't be on it forever.

My mood swings are terrible, I've just realised how bad my attitude has been of late. Hopefully mum and dad remember it's the drug not me!

 

[Chuck2008]

I think pretty much everyone gets those symptoms from high dose prednisone, but they all go away on low dose prednisone. I've been on prednisone for 2.5 years now at 5mg/day and only had those extreme symptoms during the high dose initial phase. At low doses its a great drug in my opinion. When people say they "hate prednisone" I wish they would write "hate high doses of prednisone" because they're giving people the wrong idea about a very effective drug. Any drug taken in extremely high temporary doses would have terrible side effects. For me, it was definately better than not taking it.

 

[IAmTheWalrus]

I think pretty much everyone gets those symptoms from high dose prednisone, but they all go away on low dose prednisone. I've been on prednisone for 2.5 years now at 5mg/day and only had those extreme symptoms during the high dose initial phase. At low doses its a great drug in my opinion. When people say they "hate prednisone" I wish they would write "hate high doses of prednisone" because they're giving people the wrong idea about a very effective drug. Any drug taken in extremely high temporary doses would have terrible side effects. For me, it was definately better than not taking it.

True, although I've never had any trouble even at high doses, I'm stuck around the 5mg/10mg mark, but if I could, I'd stay on a low dose permanently seeing as I feel a million dollars @ that dosage. I also take calcium to combat the osteo side effects.

 

[crankypants]

Uhm... first time on pred here (40mg weaning over 6 weeks)...

It's been 5 days now , and between jetlag and tweaky energy I haven't slept much, but my house is spotless. Getting married in less than 2 weeks, if my partner doesn't forget my mood swings are coming from the drugs/sleep dep. Scared of forthcoming comedown, but hopefully that'll at least hold off until after the wedding...

Anyone got tips for dealing with the moodswings?

 

[Piatchi]

Anyone got tips for dealing with the moodswings?

I was on Pred for 3-4 months, starting at 40mg as well and tapering. Just being aware of the fact that your mood could swing kept me from being moody. I could feel myself getting irritated or frustrated and just thought "It's just the meds..."

Some people don't have much of a problem with it.

Good luck with your wedding and pred!

 

[Lydia]

Pred makes me insane. I take ativan for the jitters and anxiety, zoloft for the crashing depression when I start to taper, and imovane to help me sleep. I have to be on it for about 3 months, and I plan to take whatever they will give me to help it go smoothly. Its more drugs than I am used to but whatever, its temporary.

 

[Jeremiah]

I will say this about entocort. It's very expensive even with insurance. I can get 100 tabs of prednisone for 8 bucks. But entorcot I spent 100 for a month supply. I don't believe there's a generic form. But apparently it's a little safer. But it's still a steroid.

 

[tiloah]

Theoretically Entocort has less side effects because it is not (as) systemic. But it only works for inflammation in a certain part of the digestive tract. It is "new" so they cannot make a generic form yet, which is part of why it's so expensive. Prednisone has been around quite a while.