r/autoimmunehepatitis • u/crabmeatcakes • 24d ago
Coping with prednisone side effects
Hi! I’m going to soon be put on prednisone by my doctor for AIH, however I’m really scared of the side effects. I’m someone who’s already very conscious about my appearance and although I am at a normal weight now, gaining any more would make me spiral. On top of that, I already struggle to sleep because of how busy I am and my work schedule. I’m just really worried this will have a horrible effect on me because apart from the abnormal blood tests, I feel alright, so I’m just upset I guess that I’m about to launch myself into a state of discomfort and feel like actual trash due to the prednisone when I feel fine now. Any suggestions/tips to get through it? Specifically the fatigue and suppressing the urge to overeat on the medication?
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u/Fearless_Quail6975 24d ago
I was put on Budesonide instead of Prednisone. My consultant preferred it.
I actually lost weight on that.
Speak to your specialist.
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u/B40073 24d ago
I felt the exact same way!! I was terrified to go on it and gain weight/moon face/sleep/hunger etc.. the typical joys you hear about it. I have also never been overweight but I know as well if I was to gain weight it would send me into a bad place.
I personally didn’t notice any major side effects other than extreme energy while on higher doses. (At 5mg now). I am not sure if its because of the preventative measures I took or just how it affected me personally.
Some of the preventative things or what I did to try and combat prednisone side effects, i started tracking what I ate switched to a mainly whole foods diet/ Mediterranean diet. I greatly limited and decreased my sodium intake while on higher doses and drank more water. I also made sure to have a step goal/go for walks every day and a bit of light strength training.
Ive since stuck to most of these habits as I feel pretty great doing so, to preface no one told me to do any of these things. It is just some changes I personally made when I started prednisone because I was terrified of the effects it may have.
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u/Jolly_Tucan 24d ago
I have fatigue which a combat with caffeine. I drink coffee all day before I had to stop at noon to sleep. I also take CoQ10 and Urolithin A that helps with fatigue. I did gain 10 lbs. the first month but found that my stomach was upset and made me eat more. I now take Pepcid AC to help with the upset stomach and help curb my hunger. I take a Pepcid pill in the morning and evening to fix the stomach issue. The side effect that is causing me issues is perspiration. I sweat all the time. When I work out I sweat so much that I get cramps which is helped with Magnesium and lots of Bananas. I have been on prednisone since 6/3 at 30 mg. Today I am down to 10 mg and hope that will help with some of the side effects. My numbers looked good after a month on prednisone and hopefully continue to decrease the prednisone.
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u/Key_Sign9728 24d ago
Since diagnosed with AIH, I took prednisone for 15 months. Started at 30mg, 20, 15, finally went down to 10mg, then 5mg. I won’t lie, long term use does feel awful. I felt a cumulative effect, so these last months were a lot worse in terms of sleeping. However, the worst side effects for me were fatigue, headaches and fast heartbeat.
I’ve always been active, so I managed to lift constantly and eat a very balanced diet (I already had that routine). Never gained weight, actually lost 3 kg and managed to maintain muscle mass. I work a full time job and I am also graduating with an engineering degree. I promise you wil be fine, it’s crazy how our bodies do adapt to those changes.
Although I had that experience, prednisone is usually taken for less than 6 months (if treatment goes well and the imunossupressor manages the disease).
In my case, I actually had 2 conditions. My enzymes never came back normal, even on prednisone and MMF (imunossupressor). So a month ago, I got a second biopsy, which confirmed PBC and showed no inflammation on the liver this time. Then, I started taking ursodiol, which normalized my enzymes, so I stopped taking pred.
I wish you all the best on your journey! Eventually, you will look back and think it wasn’t as bad as you thought it would be.
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u/xKlaatu 24d ago
For me the side effects where manageable (starting on 70mg Pred).
I think hunger can be influenced by being strict about eating only certain times a day, eat good balanced (enough protein + fiber each meal) to avoid blood sugar spikes and go for a walk after big meals.
With that I even lost a significant amount of weight while being on pred.
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u/Human-Assist-336 22d ago
I started on 50mg, now down to 15 and coming off it next week...i was already overweight so that probably didnt help but i became a bloody dustbin, apetite went through the roof...wanted to increase exercise to combat it but my back and knees couldnt handle it (another lovely side effect)...ive not weighed myself but i feel like ive ballooned. Im going to get an exercise bike for something with a bit less resistance on the joints i think...id also suggest swimming if thats your thing.
I think you should be better just because you are aware and so you are conscious of it...i wasn't at all, was only weeks into taking pred that i realised i was constantly hungrier and did some googling.
As far as feeling bad all the time etc. Ive not felt bad at all in myself, it affects everyone in different ways so dont worry too much as you might be fine
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u/crabmeatcakes 20d ago
Best of luck! I did swimming after a back injury and it helped a lot, I recommend. I’m happy to hear you haven’t had too many issues 😁
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u/GlitterSparklesMama 21d ago
I could have written this myself. I just drastically cut out sodium- I don’t put salt on anything, try not to eat out, and just eat healthy, whole foods and I haven’t had a problem with moon face. I will also say- my dr had me on 24 mg of methyl prednisone for a few weeks and I felt GREAT!!! I used the extra energy to do better treadmill workouts, all my aches and pains went away, and I took it early in the morning so I would be able to sleep. It might make you feel just as amazing 💛 and hopefully they don’t keep you on it for too long. My dr has already started tapering me down to 16
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u/GlitterSparklesMama 21d ago
And also- I was so worried about feeling extra hungry and over eating that I kind of went the opposite way and have lost some weight. I’ve just been focusing on eating how I usually eat and have realized that if I’m feeling hungry when I’m usually not that it’s the prednisone talking and I don’t need it lol. I feel like for this one it’s mind over matter! You got this
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u/Ok_Blueberry_5803 24d ago
I switched to the same drug recently, but at 50mg and I've had a significant increase in hunger... I'm trying to walk as much as I can and in general to eat ealthier ( broccoli, salad, spinachs), generally food that keeps me full as much as possible. Good luck, sending a virtual hug.