Prednisone A Curse and A Blessing Community Group

This group is for the many of us that are on Prednisone and hate it! Yes, it heals what ails us, but it also creates another batch of problems!

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deleted_user 12/12/2009

This is an open message to anyone out there who has just started taking Prednisone or has been on it for a few years and wants to know what is in store for them. I guess you could say that I am a Prednisone survivor because I have endured many difficult periods in which I couldn't imagine living with the misery but somehow found myself getting through it. I am writing this to offer hope to those who are currently in a very difficult period and feel that there is very little hope for a better outcome. I have been in that position many times and luckily have gotten through it. I have ridden the emotional roller-coaster that accompanies taking high doses of Prednisone followed by the withdrawal symptoms during the tapering phase. I have tried countless dosing and tapering schedules with doses as high as 100mg daily but most recently I am on a maintenance dose of 10mg daily. My nephrologist is going to try and leave me on this dose indefinitely because going any lower causes my kidney infection to flareup. The worse side-effects of taking Prednisone that I suffered are impaired memory, impaired cognitive abilities and emotional control problems. These have been significant and create the greatest challenges for me on a day to day basis. I have utilized a variety of cognitive-behavioural therapies (self-talk, positive attitude, Buddhist principles, relaxation and deep breathing) to help me cope and I guess that it has helped to some degree.

deleted_user 04/10/2012

Thanks andyslam,
I needed to read something positive. I will be onand off prednisone for the rest of my life, I am only 39. I have a rare disease( 2 per million, nice huh? ) and the lowest dose anyone seems to get to is between 3 and 10 mg. I started at 50 and am now at 40 I made it to 25 and had to go back up to 40. This rollercoaster will continue throughout the rest of my years. I have not been able to accept it yet, and am feeling like a fat hairy sweating grump. I am the bearded lady from the circus. I miss my cute clothes and my make-up. I miss my smile and my comfortable body that could bend over and pick something off the floor.
I needed to hear your story. How is your weight? have you found anything that helps. Since I wil b on this forever I was thinking about some surgical intervention because of the feeling of never being full. It is drastic but I can not live like this.

deleted_user 04/13/2012

can you eliminate brain damage from prednisone with mannose? I have been taking it for asthma and sleep apnea and have experienced memory problems...can't concentrate or focus or read....
I'm afraid I've been brain damaged from it

deleted_user 04/13/2012

I'm also trying to find herbs and natural steroids so I don't have to take steroids

deleted_user 04/13/2012

wow 100mg seems like too high a dose and can cause serious brain damage

deleted_user 05/28/2012

I've been taking prednisone for a while now and I have some memory problems, slowed thinking, exhaustion. I don't know if it's from the sleep apnea I have and low oxygen to my brain?
Thanks for your posts!

deleted_user 12/22/2012

I also want to thank you for this. I've been on it for 7 months and I don't think I've ever been on what's considered a high dosage. We had me down to 1 mg in November when my liver levels went up tenfold so I went back up to 20, now 15 and next month we'll see. I've been having some emotional issues and it has been very frustrating for me. I've managed to burn bridges with some of my siblings and my poor children have had to deal with my emotional mood swings, from weepy and despondent to bitchy and then I'll be okay for a bit. I'm so glad to know it's not all me. I can now tell them that it's not always me and when I apologize to them I hope they'll know I'm sincere. I'm really going to try to control this beast.

deleted_user 12/22/2012

Hi asthma13. Sorry for taking so long to reply but I haven't been on dailystrength for a while which is a good thing because it means that I am in a better place personally. Don't be worried about being brain damaged from the prednisone. As I have said, the long term prednisone use has caused impairment to my memory and cognitive abilities but I think that our brains have a lot of spare capacity and we can still function quite well in spite of the impairment. With time, I hope that you can accept that these effects, while unfortunate, are a fact of life and that you should not focus on them so much (as I did for a long time which only compounds the suffering). I try to focus on being grateful that prednisone is keeping me alive and treating my kidney disease effectively. Good luck.

deleted_user 12/22/2012

Hi chapstix. Sorry to hear about the effect that your emotiional issues have had on your relationships with some of your siblings and on your children. I can totally relate and empathize because I have had the same issues with my wife and children. I'm glad to hear that you know that it's not 'all' you but I would like you to know that it's not you 'at all'. I know who I am and what I am like when I am calm and myself BUT when I am exposed to a stressful situation, the prednisone monster rears it's ugly head and I feel like I am watching a horror movie and I have no control over it. You can't take any blame for your emotional outbursts when you are taking this stuff - this only compounds the problem. You are already dealing with enough with your health issues, the emotional issues, your family issues and whatever other issues as a result of these side effects that you have to give yourself a break and unburden yourself with feeling like you are responsible for the way that you are acting. Remember that you are a victim as much as those around you are victims of this situation. Hopefully, your loved ones can be understanding. Would you consider asking them to read this discussion topic so that they can see that you're not the only one experiencing these emotional mood swings? Best of luck.

jzbradley 02/03/2015

I am so very grateful to come across this group/discussion. I have been on Prednisone for three years solid, dosages go up and down according to my asthma. I was on Prednisone off and on for five years before going to daily doses. It amazes me that you all can articulate and put down what it is like to be on Prednisone. It feels like some one has taken my words and thoughts and jumbled them up in a huge pile. I have given up on fighting and being angry about being on the med, I am grateful to breath.

My husband passed 12/24/14, and I am in the process of having to move. I have numerous issues with my back, that I cannot bend. I only share these things to let you all know, sometimes we have to hang on to just a tiny piece of hope and faith until things change and get better. The emotional swings are hell. Sometimes I feel like I can't find my way out of a corner. Thank you all for having the courage to share so freely what you feel and what your experiences are with Prednisone. Not being alone is helpful.

jzbradley 02/03/2015

Not to mention the 60 lbs I have gained. I don't know who she is in that mirror. Not easy being over weight. I have a high respect for those who have to battle weight. Painful, embarrassing, difficult to move, clothes not fitting, rashes, goes on and on. God Bless those that deal well with the weight gains.

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