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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/ Prednisone A Curse and A Blessing Support Group

I've been on Prednisone for 36 years and live

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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.
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Thank you for sharing your story with us. There are some days that I know I can make it on this dosage, but there are others that I just want off of it now. Right now.
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I can totally empathize with you about wanting to get off of it immediately. I have wished that in the past so many times that I have lost count. I finally 'accepted' the Predisone some time ago which actually put my mind at peace. I had hated taking the Prednisone for so many years and it wasn't a healthy nor a productive use of my energy. I had to face reality and acknowledge that I needed to take it to stay alive in the same way that my parents have had to be on medication for their high blood pressure and countless others need numerous nasty drugs to cope with their individual health issues.

I hope that you're able to get a decent night sleep on your high dose. That was a big problem for me so my nephrologist gave me a prescription for some mild sleeping pills which worked wonders. I was able to get a great night's sleep and I didn't feel drowsy at all during the day.

Thanks for listening....Andy
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I'm in the process of accepting it, just a stubborn redhead and it takes us longer. lol My mother wanted me to taper it down on my own, but I know the dangers of that. I think the side effects are subsiding slowly, but surely. When I first started it, the muscle weakness was worse than the MG. I felt just awful for a full month, most side effects-I got. What's really funny is that I'm still waiting for the euphoria feeling the neuro promised me. lol They told me I would feel that way for a week, but it never happened. After being sick for so long, I was looking forward to that week. Ah well, they said since I had such a bad reaction to it, that I would be on of the easier ones during tapering. Fingers crossed.

I can sleep, just don't wake me up please. I was up at 2:30 this morning because I was woken up. I don't know if it is the prednisone that won't allow me to fall back asleep or the pain. Thanks for the advice about the sleeping pills. I'd like to hold off as long as possible, but if these bags under my eyes get any worse. . .
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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.

Thanks. these are the side effects they don't tell us about. the ones that turn our life upside down and inside out. i've asked and asked and asked different doctors, what was going on with me, and got shrugged shoulders in return, al the while on and off high dosages of prednisone over 10 years.
deleted_user
deleted_user
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.

Thanks. these are the side effects they don't tell us about. the ones that turn our life upside down and inside out. i've asked and asked and asked different doctors, what was going on with me, and got shrugged shoulders in return, al the while on and off high dosages of prednisone over 10 years.
deleted_user
deleted_user
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.

Thanks. these are the side effects they don't tell us about. the ones that turn our life upside down and inside out. i've asked and asked and asked different doctors, what was going on with me, and got shrugged shoulders in return, al the while on and off high dosages of prednisone over 10 years.
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Sigh..I got the same shoulder shrugging from both my Nephrologists...unfortunately, they only focus on your 'main' condition and leave it up to you to deal with the side effects of the medication that they prescribe...it can be maddening but I eventually learned to use my energy in a more positive way....so you are in very good company in terms of the side effects you are experiencing and probably in terms of the lack of action on the part of your doctors....I hope that you can learn to 'manage' these side effects and enjoy your life as much as you can ;)
jn4025
jn4025
Thanks andyslam for this post. I have been on prednisone numerous times to get my UC flares into remission. This time around having lots of sleep issues and starting to wean down (which helps). Still having problems with the emotional aspect of this drug. It's nice just to feel you're not alone and to get a bit of emotional support from someone who's "been there". When I'm not flaring I'm easy going, laid back, and just like to enjoy life. Now...feels like all the joy is sucked out of it. Just had to vent...
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Hello jn4025 and welcome to the group. I'm glad that you felt comforted to some degree with my post. I love the idea that others like yourself can feel just a little better simply because I shared a bit of my personal experience. It's a win-win because the more people that read and reply to my post, the better I feel. I feel better knowing that I am not alone as well and automatically feel a connection and sense of community with everyone involved. I know exactly what you're going through as far as feeling like the joy of like is sucked out of you. Prednisone affects our thinking and emotions so much that as strong minded and determined we try to be, I think that as human beings we are facing something that may be beyond our capacity to overcome with mental effort alone. Our biggest ally in this 'battle' is time. I know that it seems like a very small consolation when you're at the dark end of the tunnel, but as the time passes we then truly appreciate how much it does heal. Keep on venting (as long as it makes you feel better) and dream of the days when you're easy going, laid back and enjoying life ;)
jn4025
jn4025
Thanks, andyslam. I've been trying the various self help routes like you; relaxation techniques, getting myself to just go out more and be with family and friends, etc., and finding the support groups on this site. It helps me to have that sympathetic ear sometimes from you and everyone else on here who actually have gone through this stuff and can relate. Hope you're having better days :)
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Hi jn4025. It's good to hear that you're trying a number of things to help yourself. I believe that the mere act of trying is a really good sign because it means that you still have the fight in you to want to enjoy life. I get worried when I ever feel like saying I just don't feel like bothering anymore. Fortunately, when I hit that point, I almost feel so panicky about losing my mind that I have to throw myself into my positive self-talk mode and to read my journals (I do a lot of journaling where I write down things like what I'm grateful for, all the great things that I have in my life, reasons to be happy etc). It reminds me that I am blessed in many ways compared to so many people and that I can't pity myself - I need to always be grateful for whatever good that there is in my life. I am having better days right now - thank you very much - and I hope you are too.
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I've read that prolonged use can lead to bone loss. Has any of you long time users seen this? I just started on calcium supplements.
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Thank you for sharing your experience with Prednisolone. Wow, 36 yaers! I thought my 11 years was too long, well, my doctors do anyway. What I can say about how Prednisolone helps me is that whenever I increase it, it helps my UC within a week. The highest I have been on is 60mg and the lowest (which I am on now) is 6mg and whenever I get lower than 7mg, my UC flares back up again, which it is now.
I experience the moon face, the very bad mood swings and the exessive hunger and weight gain and slight wearing of one of my hip bones.
Throughout the last 11 years, I have seen 3 gastroenterologysts and am now onto my fourth after spending time in hospital last year they assigned me a new specialist.
All four of them have tried to get me off of the Pred but it always fails me.
I think I have been on all the medications there is for this disease and am still waiting for a cure in a pill!!
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Hello kylosis. Yes, prolonged prednisone use can lead to bone loss. I have had bone-density tests done every 2 years for as long as I can remember and luckily my bone density is still in the healthy range. I have been taking calcium supplements for a long time, I ensure I have adequate calcium in my diet and I do load bearing exercises regularily. I hope that your doctor is on top of these things. If not, I would find another one right away. I wish you all the best.
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Hi nixienic. I am sorry to hear that you have been on the P for 11 years because that IS way too long. I understand and appreciate everything that you have had to endure. On a positive note, at least the P is highly effective - that's what I keep telling myself anyways ;).
My nephrologist has tried to get me off the P countless times but my kidney disease always relapses and I end up having to take a very high dose to control the flareup and it takes a very long time to taper back down to a maintenance dose - something you know only too well. So in the end, my current nephrologist came up with the suggestion to not try to get get me off the P anymore and to just stay on a maintenance dose of 10mg indefinitely. It has been over a year now and I am glad that I agreed to her suggestion because I haven't had to go through the roller-coaster of hell anymore.
I hope this provides some insight and helps out in anyway. I wish you all the best.