What side effects did you experience on pred?

Hello everyone!

I´m newly diagnosed and doing high dose prednisone right now, or 80 mg.
Just curious about what side effects others have experienced on this medicine?

I´m feeling warm all the time now, getting high blood pressure and pulse along with moonface and buffalo hump Went for a walk today and had to lie down on the side of the road because I got so nauseus, probably because of the blood pressure
And I need sleeping pills too. Or at least I think all this comes from the prednisone.
Not any weight gain so far.

The list is very, very long but I had: sweating, increased blood sugar, shaking, vision problems, hunger, brain fog, feeling racy, mood swings, intolerance to noise, stuttered, and during the taper: extreme fatigue, muscle weakness, brain fog, joint pain, etc. Some people experience hair loss, irregular periods, depression, headaches, etc.

It can be quite a ride, but you just have to keep reminding yourself that it's the drug and it will end.

Hi,

I had my first round of high dose Pred this year, got off fairly quick after 2.5 months. Just finished with it.

For me, irritability, I am normally quite a calm person, but I would flip at the slightest thing. Acne on shoulders and torso, took me back to my youth and not in a good way. Had an incredible desire to want to eat constantly, no matter what I ate, I could have easily ate it four times over! Sleep issues, I was a hit the pillow, gone in under a minute type. On Pred I felt I could have painted the exterior of the house at 3 am and run twice round the block. I resisted sleeping pills, initially but my Doctor convinced me rest was important so I went on the pills, they calmed me right down, out like a light, to the family's relief! Heartburn, again tried to resist more pills but was told I needed pills to combat the heartburn and protect my stomach.


I think that was it, but the longer it went on the more conscious I was of how It was impacting me.

As Sandi says, when I was off the Pred, I went back to normal, am chilled(ish) again, acne cleared, have normal appetite I think, or might even be slightly reduced if I think about it. Off the sleeping pills and sleep as soon as my head hits the pillow.

Hang in there, light was at the end of my tunnel, on this and I hope you will be the same!

You can have any type of side effect with any drug! For instance I haven't found anyone else who had the same side effect I had from prednisone.

I broke out in hives itching from head to toe on pred.

Just got tapered down to 25mg from being on 30mg for months. I started to have muscle weakness in arms and my hair is falling out a lot. The joint pain started two days ago, last week counts 66k. The doctor didn't want to lower my dose and only didn't so because of the side effects.

Went for CBC today and will find out the counts tomorrow hoping to taper some more on the Pred.

Thank you so much for all the replies! It's really good to know I'm not alone!
I guess part of it is when I sit here feeling miserable I start worrying it's the illness and not the drugs! So it's good to get confirmed that's it's "just" the prednisone. And my skin is breaking out too, my face and scalp is sore to touch. Bursting into tears as well.. My poor husband!

ITP itself doesn't cause many symptoms other than fatigue and bleeding-related things.

I took a trip to Nassau with my parents and my husband while I was on a lot of pred. I told my mom 'I'm on a medication the side effects of which are hunger and rage' just so she would be forewarned.
Erica

The highest dose I've taken is 20 mg. I took it once in the past for 8 months without significant side effects at all. I had to start it again exactly a year ago and have been on it since then. This time around, I was mostly side effect free for the first 5 months. Then I developed round the clock heartburn, my hair started falling out, and I've gained 15 lbs. As of the past two months, I can't fall asleep at night, my blood pressure is 20 points too high, my pulse is rarely below 120 resting, my heart is doing flip-flops, and anxiety is off the chart.

As I understand it, higher doses can do any or all these things (and numerous others) almost immediately; but so can lower doses when taken for longer periods.

Hope you'll be off it soon.

Ugh.. Don't I know it, I'm having high pulse and blood pressure too. Plus that now I'm feeling horribly warm and sweating.

Plus I'm having my periods and my platelets are very low right now too, at just 5, 2 days ago so I'm feeling utterly exhausted and don't know if it's the itp or the drugs or my periods or most likely a combination of all three..

I'd say it's a combination of all three. I also think that you are not getting much of a response from that high of a dose. Might be time to suggest another treatment.

Thank you, I guess you're right Sandi! It's very disappointing because I responded great to the pred in the beginning, went from 4-238 in just 3 days, but the hematologist was away on holiday when all this happened, and the assisstant doc tapered me from 100 mg to 40 mg in just 7 days.. And it all came crashing down.

My hematologist thinks that since I responded so well in the beginning, it's this illadvised tapering that's the reason I'm so low and she wants to try the pred a bit longer in case it'll turn again. She said that if it'll work, it might still take 3-4 weeks with low numbers, before it'll get better, but if I'm still in single digits tomorrow, I'm not sure, I find it very stressful! I have a meeting with her on thursday, she might suggest something other then. I did read somewhere that women can have a drop in platelets around the periods, have you heard of that? Kinda hoping that's the reason for these low numbers..

Yes, women sometimes do drop in counts during their periods, but not usually on high doses of Prednisone. I've seen late responders with Prednisone before, but sometimes it doesn't happen and you go through all of that for nothing. Only you can decide if the wait is worth it.

I'm still waiting for my hematologist to call with today's numbers, and I have an appointment with her on thursday, I guess she might want to try something new if I'm still in singles this week. I'm feeling a bit perkier now, so I hope that's a good sign!

Thank you again for all your replies Sandi, in this and my other thread, this is so new to me, it's great to have someone who has so much experience and is willing to help!