Just been prescribed prednisone - help!

[Katezxx]

Hi everyone, I have just joined the forum after recently being diagnosed with crohns disease. I have been having diahorea everyday since February. After what seemed like forever and a colonoscopy later I was diagnosed with IBD. I began taking pentasa 2g, 6 weeks ago, then upped the pentasa to 3g and finally 4g. However I felt absolutely awful on this medication. My diahorea increased ten fold, particulary at night and I was going from using the toilet about 10 times a day, to at least 30. I had no appetite and felt sick all the time, I lost half a stone and my knees and elbows were very painful. It is true to say I felt better before I started taking the pentasa.

I had an appointment today with my Gastroenteologist and he stated that clearly pentasa isn't working and now wants me to go straight onto steroids (prednisone) 40mg for the 1st week then decreasing this by 5mg each week until 0. I am so worried about this, having read about all the side effects. Can anyone please share their stories of this drug with me and provide me with a glimmer of hope?

 

[Grumbletum]

Hi Kate
Sorry to hear about your diagnosis and that the Pentasa didn't work, but I'm glad you found your way to the forum.
The definite plus about the Prednisolone is that it is generally very successful in reducing inflammation. Yes, when you read all the side effects on the leaflet, it is really scary but a lot of those are possibles.
The hardest one for me was feeling very spaced out a lot of the time when I first started on 20mg. But that wore off after a while, and I didn't get it again when I had to go up to 40mg.
Hopefully it will work quickly for you and you won't have to stay on it too long.

 

[Katezxx]

Hi Helen, thank you for getting back to me. Yeah I think that's what I am most woried about is the huge list of side effects and what effect they can have on your mental state etc. It is very daunting! It will be 8 weeks I will be on the prednisone for and hopefully that will be all. Got to look on the bright side and hope that it is successful! Thank you again for your help :thumleft:

 

[jordan29]

Hi Kate you have come to the right place for support and info this forum has helped me loads to cope with my sons dx he is 15 and he started on pred 5 weeks ago 40mg for 3 weeks then droping down 5mg every week and he is like a new person he has gone back up to his normal weight nearly bm from 10 to 15 times a day to 2 and back doing his every day things please done worry to much about the side affects the only one that's affected Jordan my son is he cannot stop eating I hope when you start them you get to feel better soon xx

 

[Katezxx]

Thank you very much for your help and advice. I will be sure to come back and keep you posted on how things are going. That's great that the prednisone has worked for your son, I hope I can say the same in a few weeks.

 

[Artificial]

Hi Kate,

I recently started the pred to, 40mg...been on it for a few weeks now. I was quite worried by the enormous amount of side effects to! So far I haven't had any problems (apart from trouble sleeping). I'm not sure they are having a great effect on me yet, still got the same pain/problems but I'm hoping it will get better! Good luck and let me know how it goes!

Rachel

 

[Katezxx]

Hi Rachel, thanks for your reply. I'm getting myself quite worked up about the prospect of starting them, the weight gain, facial hair and 'moon face' stories I have read about on the Internet aren't filling me with hope, ha! But the main thing really is that they help my crohns, so fingers crossed. I'll keep you posted.

 

[jo88]

hi there, steroids are miracle drugs and will improve your condition very quickly. side effects are only a concern if they were taken very long term. in most cases short courses of these tablets is enough to reduce symptoms. good luck keep well xx

 

[Katezxx]

Thanks for your help and advice Jo, much appreciated.

 

[cooljules]

Hi Kate,

I have been on 40 mg of prednisone now for six months and unfortuanetly I have experienced all the side effects especially the moon face and weight gain and it has been really depressing but at the same time it has helped my flare up, well after a week in the hospital as well. I contemplate daily do I want off the rpednsione or back int he hospital.....this may sound vein but I hate the weight gain!!! Okay I am staying on it for now getting the dose lowered every couple of weeks so we will see. I just want to tell you to hang in there everyone is so different youo may not experience any of the side effects. Good Luck!

 

[chrisnsteph1022]

Pred is very fast-acting, so it will help get things under control quickly. Personally, I will not take pred unless it's life-or-death. I get some bad, bad side effects that can be dangerous. But you may not have any side effects! Good luck!

 

[Rickd5150]

It works great i felt really good really quick then after about 3 weeks on it I noticed that i lost my temper really quick just listen to people around you and you should be fine it is nothing I would want to be on all the time but it made it so i felt better

 

[littlefreebird]

i obviously can't tell you not to look at side effects because that would be bad advice but please don't worry!! side effects for any drug sound scary, read the back of a paracetamol box and it would almost put you off taking them. don't listen to horror stories, everyone is completley different, start them with an open mind because if you expect to feel crap on them you obviously will.

personally, i refuse steroids unless its life or death because doctors seem very quick to prescribe steroids when other medication works just as effective. saying that though, pred is excellent for reducing inflammation in a short space of time, if you've been prescribed a big dose, you are obviously sick enough to need them. you are new to crohn's, with experience over time you may discover something else that works instead of steroids but untill then give them ago, they may not be as bad as you think. i did not experience any side effects apart from increased appetite (which isnt a bad thing!) and a 'moon' face everyone talks about, which develops so slowly you will hardly notice at the time. other than that there were no nasty side effects.

i wish you all the best and keep us posted on how they work for you!

 

[Sammio]

Hi,
After being diagnosed with Crohns Disease in May I was put on IV steroids for a week then moved on to Prednisolone starting on 40mg aswell. I suffered no side affects with these and felt they got my Crohns under control quickly. I can understand that you are worried about going on them but try not to, steroids work wonders!! Good Luck and I hope the tablets help you lots xx

 

[Sophia]

Hi dear,

You sound like a very positive girl, and that always helps! )

Prednisone is a necessary evil sometimes, unfortunately. As much as it is horrible, it also is a wonder medicine, and helps reduce the inflammation quite rapidly for most. I unfortunately suffered from extreme side effects, but I was put on 60 mg solu-medrol IV for a long time, and then very slowly tapered off as the steroids didn't have the quick effect on me as they should have had. I don't think that is very common though, and I am going to keep my fingers crossed that you will not experience the side effects, and that you will get better quickly. Judging from the posts above, not all people have side effects, and it certainly is rare to have them all.

As far as the moon face goes, I took some photos of myself with my web cam while I was at my worst, and I sometimes look at them now. It is quite scary to look back and realize that I looked that awful, but at the same time, I am so incredibly grateful that I got through it, got better and got my face back. Oh and the facial hair: I went and did threading on my whole face! LOL! The things prednisone will make you do...

We will be here to help you through this if you need us!

Big hug!

 

[ronmec]

hi
i was also short tempered but only for two weeks.my big problem was almost no sleep for the entire eight weeks so had to rest a lot, until prescribed Zopiclone 5mg lets you sleep but it too has side effects for some people.

 

[Grumbletum]

Yes, I forgot about the grumpiness :devil: I find I get snappy and bad-tempered when I start tapering down.

 

[steph38]

I have been on Prednisone all the time now for 16 years, yes you heard me correctly 16 years. the side affects are minimal when you are on them short term, however do not let anyone keep you on them long term, becuase you will have major side effects like I have. I wish you well and I hope it works for you.

 

[soretum]

Hi Kate,

I'm on pred at the moment too, I found the first 2 weeks pretty rough with mood swings, insomnia and quite bad nausea and heartburn (which may have been the pentasa) but once I got to 30mg that all seemed to settel down. I do find that I get really tired and shakey for a couple of days when I taper....and my face is looking a little fuller! Somehow I have managed to not put on any weight thankgod! The weight loss was the one and only good thing about the chron's! I'm stuck on 20mg at the moment until I start azathioprine but I'm generally feeling the best I've felt in a couple of years at the moment. I was very, very reluctant to take it but if you can get thru the first few weeks then it really is worth it....good luck!