List of Prednisone side effects

[Wegetarian]

I was searching for likely side effects for a long time when I started my meds - but the ones I could find were quite ambiguous and didn't help much. At another group someone linked this page which even has pictures for the different side effects. Figured I'd share. Didn't know so many even have cute names, maybe my small buffalo hump isn't too bad:) Strange how many I've seen to collect already even though its like one month from my diagnosis.


Prednisone Information (http://www.hopkinsvasculitis.org/vasculitis-treatments/prednisone/)


Here is an interesting article on Pred side effects on the mind.

http://www.medicine.wisc.edu/~williams/steroid_psych_effects.pdf

Its also interesting since it takes into account larger Pred doses, like giving subjects 60mg of pred / day, as so many papers I've read just discuss 10mg and over as "high doses".

[annekat]

Thanks for that link, Wegetarian, not only for the pred info, but because it is the link to the Johns Hopkins Vasculitis Center, a well-known and respected specialty center where some of our forum members go for treatment. I hadn't seen it before, and it gives lots of good info, so I have bookmarked it now.

[Wegetarian]

Yeah, it was the clearest list I've seen anywhere. Wouldn't be a bad idea to add it to some sticky thread. Actually it would be great to have a "Weg for noobs"-thread which could list the most usual symptoms, the treatments, medications and common side effects.

[annekat]

I had seen WG info pages from JH before, but this looks like an updated version of it all from what I remember seeing before.

[Alysia]

Hi wegetarian,
thanks for the list :thumbup:
it is a very depressing one :crying:
the pics are "prescription" to some nightmares :scared:
reading it makes one want to throw away all pred...
which is not possible... :sad:

I want to "balance" it a little bit, so here is my love letter to pred, which I wrote at another thread... might be more encouraging...

My Dear pred,
for years we are good friends. I will never forget how you saved my life, only you. even the docs didn't know at that time how important you are going to be in my life. they just check if you can help me.
I needed you to be strong enough with me at the begining (60mg) and you cleared my lungs so well with no other help.
not only that, you drained my ears, you calmed my aching red joints, you stopped my diarhea and terrible pains in my stomach. (since i have also colon involovement).
I'm gratefull to you, my pred, for all that.
and there is more: you were not cruel to me like you are with others: you didnt disturb my sleep at nights. never. you didnt make me gain weight.
I admit I didnt like much the "cocker spaniel face" coming after "moon face". ("moon face" was nice, everyone said)
you even helped me cook better (more gourmet food) and feelling Hi, when i was depressed.
BUT, my dear pred, isn't it time to start separation ?
you know I hate sepatations but I can handle one from you.
so please, release me. set me free. I will never forget you.
I promise.
yours, sincerely :love:

[Wegetarian]

Nice one Alysia! :)

I dunno, I mean it just felt so great when the the Pred started working in just a few hours and I could finally breath trough my nose for the first time in three weeks, and by the next day it was all clear... And walking again outside without feeling so horrible (well that was partly the IV-antibiotics too..)

Now who want's to share their country song about the buffalo hump? I'm sure there must be one!

[drz]

I was searching for likely side effects for a long time when I started my meds - but the ones I could find were quite ambiguous and didn't help much. At another group someone linked this page which even has pictures for the different side effects. Figured I'd share. Didn't know so many even have cute names, maybe my small buffalo hump isn't too bad:) Strange how many I've seen to collect already even though its like one month from my diagnosis.


Prednisone Information (http://www.hopkinsvasculitis.org/vasculitis-treatments/prednisone/)

Pretty scary stuff and good summary of why people strive to get off the high dosages of pred as soon as possible. I wonder how many of these do occur when dosage is under 10 mg day?

[carriej22]

I should send them my picture of striae to put up - would scare the pants right off most people. Scares the pants off me sometimes and they're on my body.

[Meode81]

Thank you for that link. The lines on my stomach look like I have been attacked by aliens!!! The side effects list DEF helped calm my concerns about the changes in my body. I am glad to be down to 20mg of Prendisone... BUT I need other advice. (I currently take meds) but HOW do you all deal with the depression. I keep hearing things will get better. I cannot look in a mirror or have my picture taken. I do not look like myself. I feel like the mood swings get worse and worse. IS IT REALLY GOING TO GET BETTER? It's only been 9 months since my diagnosis and lung removal.. but at 32 I feel lost...... :crying:

[Dirty Don]

I take Lexapro to control serotonin loss, thus my moods. Also keep a bottle of Xanax close at all times.

[Wegetarian]

Anytime Meode. I'm 34 BTW.

I was starting to feel easily aggitated when I was on 80mg of Pred, it also made it more difficult for me to sleep (took 20mg at evenings which did make me have more energy on the evenings). I was also feeling a bit depressed.

The doc was a bit surprised I was on so much, and cut me down to 60mg. I feel a lot better mentally, but its hard to put it all on Pred since obv so much have happened and it was only a month since I was diagnosed so lots of big questions and thinking etc. She did say old people can even go on a psychosis due to the pred. So strong medicine for sure. She said most often people just feel like they have more energy. I did feel that I don't cough as much when I have this lower dosage (although perhaps silly to say 60mg would be a lower dosage since I guess anything abouve 10 is considered high and someone mentioned that in some vasculites book for docs 60 was recommended as the max)

[drz]

Thank you for that link. The lines on my stomach look like I have been attacked by aliens!!! The side effects list DEF helped calm my concerns about the changes in my body. I am glad to be down to 20mg of Prendisone... BUT I need other advice. (I currently take meds) but HOW do you all deal with the depression. I keep hearing things will get better. I cannot look in a mirror or have my picture taken. I do not look like myself. I feel like the mood swings get worse and worse. IS IT REALLY GOING TO GET BETTER? It's only been 9 months since my diagnosis and lung removal.. but at 32 I feel lost...... :crying:

I too took some psychiatric meds during my real high pred days to help deal with extreme moods and to get some sleep. But with treatment things DO tend to get better usually but it doesn't happen quickly. Some changes are often permanent and hard to accept with out psychotherapy or great support system. Venting here can also be helpful because many of us have been there and had or have similar experiences and feelings.

[drz]

Anytime Meode. I'm 34 BTW.

I was starting to feel easily aggitated when I was on 80mg of Pred, it also made it more difficult for me to sleep (took 20mg at evenings which did make me have more energy on the evenings). I was also feeling a bit depressed.

The doc was a bit surprised I was on so much, and cut me down to 60mg. I feel a lot better mentally, but its hard to put it all on Pred since obv so much have happened and it was only a month since I was diagnosed so lots of big questions and thinking etc. She did say old people can even go on a psychosis due to the pred. So strong medicine for sure. She said most often people just feel like they have more energy. I did feel that I don't cough as much when I have this lower dosage (although perhaps silly to say 60mg would be a lower dosage since I guess anything abouve 10 is considered high and someone mentioned that in some vasculites book for docs 60 was recommended as the max)

A drug induced manic psychosis is most often result of being on extreme high dosages of steroids like 1000 mg of solumedrol which equates to about 1650 mg of pred meds. A few days of that will usually make you pretty manic. Quite an experience but staff seem very familiar with it and know how to deal with it well but your family might get rather freaked out by your behavior then. Every time i have needed to go into a hospital for Weg related stuff they have really cranked up the steroids because it is the most effective way to relieve the damage from inflammation but as we all know this miracle drug also has its downside so we all want to get off or down to lower dosage ASAP.

[Wegetarian]

Venting here can also be helpful because many of us have been there and had or have similar experiences and feelings.

Its not just the venting, at least for me it was extremely helpful to know more about the expected side effects of the meds. Its not like the doctors told me anything about them. They just put the pills in a little plastic cup and told me to take them. So reading here about other peoples experiences and knowing that pred caused mood swings to other people made it a lot easier for me to understand what is happening and accept it.

[Wegetarian]

Jim added such a nice pic to the vasculites FB group, had to share :)

1923

[Wegetarian]

Has anyone read this book? Thinking of getting it so I'd know more about Pred and what it will do to me.


Coping with Prednisone, Revised and Updated: (*and Other Cortisone-Related Medicines): Eugenia Zukerman, Julie R. Ingelfinger: 9780312375607: Amazon.com: Books (http://www.amazon.com/Coping-Prednisone-Revised-Updated-Cortisone-Related/dp/0312375603)

[Pete]

Has anyone read this book? Thinking of getting it so I'd know more about Pred and what it will do to me.


Coping with Prednisone, Revised and Updated: (*and Other Cortisone-Related Medicines): Eugenia Zukerman, Julie R. Ingelfinger: 9780312375607: Amazon.com: Books (http://www.amazon.com/Coping-Prednisone-Revised-Updated-Cortisone-Related/dp/0312375603)

I read it a year or so ago. It's an easy read. She has eosonophitis (or something like that) and pred was the med. Parts are scary. Parts are hilarious. Women can probably relate better to her...

[Sjap0655]

Well, I haven't read the book but I can relate to the side affects from 60 mg of prednisone. I am experiencing moon face, buffalo hump and sleepless nights. I would also dare to say mood swings but my hubby would say "I just need to take a nap"...lol Cheers!

[Wegetarian]

Well, I haven't read the book but I can relate to the side affects from 60 mg of prednisone. I am experiencing moon face, buffalo hump and sleepless nights. I would also dare to say mood swings but my hubby would say "I just need to take a nap"...lol Cheers!

Sorry to hear. If it makes you feel any better I felt a ton better when I went down from 60mg -> 40mg, couldn't really notice any of the side effects anymore. Now I'm at 25mg and I think my moon face is thinning down now. Still have the hump, but I think it might be going away too as I don't feel it as much when I move both my arms back.

[Pete]

Well, I haven't read the book but I can relate to the side affects from 60 mg of prednisone. I am experiencing moon face, buffalo hump and sleepless nights. I would also dare to say mood swings but my hubby would say "I just need to take a nap"...lol Cheers!

Sorry to hear about your side effects. I've been really careful with my weight, but it's not easy. I can relate to the sleepless nights. At least I don't have to deal with working. How's the paleo diet going?

[marta]

Hey Gang,

I've been nutty busy, but have a day or two to bring my head above the water and saw this post... I just wanted to add a link to a post I made on my blog many moons ago talking about pred and all it's yucky glory... hope it helps.

Weggies Unite: Prednisone and it's wonderful side effects (http://weggiesunite.blogspot.ca/2010/09/prednisone-and-its-wonderful-side.html)

Big hugs to you all.

Marta - not so smarta

[Sjap0655]

I will check it out Marta. I too started blogging or a online diary about my Wegener's adventure. You can find it at My Fitness Journey (http://charitymartinsfitnessjourney.tumblr.com)

It talks about diet, exercise and the prednisone monster! It covers some personal goals as well but feel free to take a peek.

Pete, I'm doing well watching what I eat and exercising. Its only been two weeks though so time will tell. My appointment up at CCF is next week so I'm so very hopeful they will taper me down on the prednisone after the appointment.

[Sjap0655]

Hi Pete, I 'd say the diet is coming along good. You would be surprised at all the resources on the internet and different cook books to make going Paleo very easy. The hardest part is breaking the habit wheel-breads, baked goods and legumes. But to mix things up a bit, I've been making soups and salads and using the cook book for meats and its kept dinner exciting so far.

I started working out and lets just say......I AM EXHAUSTED!!!! Lol. But got to keep going if I want to keep this prednisone monster at bay!

[annekat]

Hi Pete, I 'd say the diet is coming along good. You would be surprised at all the resources on the internet and different cook books to make going Paleo very easy. The hardest part is breaking the habit wheel-breads, baked goods and legumes. But to mix things up a bit, I've been making soups and salads and using the cook book for meats and its kept dinner exciting so far.

I started working out and lets just say......I AM EXHAUSTED!!!! Lol. But got to keep going if I want to keep this prednisone monster at bay! Soups are great because you can throw everything healthful in there and the nutrients don't go anywhere in the cooking process. And the liquid content helps keep us hydrated. I just found that collard greens are very good in soups, just cut them in thin strips and throw them in. The first batch included carrots, sweet onions, and garlic, but the next batch will have chicken chunks in it, too.

[Sjap0655]

Anne. That soup sounds delicious!!!!

[Wegetarian]

Here is an interesting article on Pred side effects on the mind.

http://www.medicine.wisc.edu/~williams/steroid_psych_effects.pdf

Its also interesting since it takes into account larger Pred doses, like giving subjects 60mg of pred / day, as so many papers I've read just discuss 10mg and over as "high doses".

[marta]

Here is an interesting article on Pred side effects on the mind.

http://www.medicine.wisc.edu/~williams/steroid_psych_effects.pdf

Its also interesting since it takes into account larger Pred doses, like giving subjects 60mg of pred / day, as so many papers I've read just discuss 10mg and over as "high doses".

Just reading this has the potential to put me in a psychotic state... Sheesh.... here's an example of really having to weigh the pros and cons of meds, but seeing how pred keeps us alive, it automatically wins, but man oh man, that's just nasty.

Thanks for sharing this paper.

[Dirty Don]

Marta? Psychotic? Take a Xanax...it smooths everything!! LOL! Reaching for coffee next to my drugs, next to my Xanax, next to me...oooohhoohhhh...next to ME-eeeee...

[Wegetarian]

Yeah, and when I was at the spa I also heard that its especially tough for the kids since their school mates can make fun of their moon faces :( Just like they wouldn't have enough to deal with already.

[drz]

Just reading this has the potential to put me in a psychotic state... Sheesh.... here's an example of really having to weigh the pros and cons of meds, but seeing how pred keeps us alive, it automatically wins, but man oh man, that's just nasty.

Thanks for sharing this paper.

I didn't know this was another one of the many advances discovered by the Mayo Clinic way back in 1948.

I do remember the euphoria and hypomania which wasn't too bad. This was when I got down to 60 mg of pred. At 1000 mg solumedrol which equates to 1650 mg of pred the steroid psychosis was both great at times with delusions of grandeur (I was inventing drugs to cure Wegs and other disease) and the worst nightmare of my life (courtesy of ambien) when I thought I had been captured by terrorists that were going to behead me in the morning. I kept trying to escape but was too weak to even sit up. Seroquel was helpful in reducing the anxiety and other symptoms till the effects of the high dosage of solumedrol finally decreased. Later I remember also being depressed but I thought this had more to do with loss of health than the drugs.

This part still concerns me now: persistent memory and cognitive impairment occurs in 7 percent of people.

Doctors have told me concentration problems are normal for people taking pred even at lower dosages. This seems pretty common among many of us.

Thanks for the interesting reference. This is also worth saving in the reference section.

[Alysia]

https://fbcdn-sphotos-g-a.akamaihd.net/hphotos-ak-frc3/t1/1546465_10153684266725411_1472471802_n.jpg

[Alysia]

https://fbcdn-sphotos-b-a.akamaihd.net/hphotos-ak-ash3/1604871_10152239611041177_60526799_n.jpg

[khaisley]

How long does it take to start feeling some improvement with Pred? My hubby was started on 20 MG of Pred on January 10, 2014 (GP prescribed due to the rapid onset of joint pain). On January 14 the Rheumy increased him to 60MG, he has been on this higer dose for 5 days, she we be seeing any changes yet? Coughing has actually increased again, joint pain not as intense, but still there and required some pain meds, yesterday he started showing some eye involement (watery eyes) and he is rubbing them alot, and today he has complained of some pain in his chest when he breathes deep. I try not to be annoying and constantly ask him but I'm very concerned and he is still holding back admitting something is wrong until he has proof and official diagnosis. It so frustrating with a stubborn man! :)

[Wegetarian]

Well with me it was a matter of hours once I was on 60mg. With 20mg I didn't notice anything, but 60 started clearing up my nose a few hours after I took the pill. Before that I hadn't been able to breath through my nose for over a week.

[brettgrant99]

I was diagnosed December 17, 2013. They put me on 80 mg Prednisone, 40 in the morning and 40 in the evening. I was feeling better the next day. I also stopped sleeping the next day. The acne started up about 3 days later. I went off of all my other medications (pain and asthma and allergy). I just dropped down to 60 mg and now I get about 5 hours of sleep instead of 4. I just started Rituxan last Friday. On rare occasions, I would have issues with deep breathing, but they were always short lived.

I understand the concern with your significant other, my wife is the similar. A lot of the time I just don't want to talk about it. There isn't anything instantly that I can do about it. What are my options? Go to the ER? If "I" don't feel that it is very serious talking about it doesn't usually help. As I grow more concerned, I like to talk about it with my wife. You might need to vent more here or with friends if you feel a need to discuss it.

I don't know if you are religious or not, but I am and sometimes I get the feeling that this is just one giant lesson in patience from God. I've really had to dial up being patient. My wife has also mentioned being patient is really hard lately.

Good Luck.

[khaisley]

We are hoping to get final answers early this week. I have had great support from people here, so helpful and encouraging! I guess he has eventually told me when he needs to be seen, so I'll just keep being available and when he feels its enough..then we will go. He has been asking more questions lately and I know its somethign he has to come to terms with on his own. I'm just so scared the longer it takes to officially diagnose, the more damage is done. We really have not seen benefit from the Pred. I wonder if him lacking a spleen could be why the Pred isn't working? I need answers and I can't find information anywhere on someone that has WG and no spleen. We do have a lot of people praying for us and I know that God will carry us through this valley!

[annekat]

Pred alone cannot be expected to clear up Wegs symptoms, if that is what he has and is in the acute early stages of a flare. Everyone is different and pred can really do a lot fast for some of us. But if we have Wegs, we need to get on an immunosuppressant along with the pred. So it is imperative that he get a diagnosis soon and begin real treatment if he indeed has Wegs. If he doesn't, or the dx is inconclusive, then I am at a loss as to what to say. I don't hope he has Wegs, but if he does, I hope you find out soon. That alone could be a big weight off your shoulders, just to know what you are dealing with.

[khaisley]

From everything I am reading, and for the Rheumy to say she is very confident (which is very unusual for this Rheumy to say she is very confident without results) that its WG. I agree, I hope it isn't...but he has most of the symptoms. He may have had this for several years as we look back at things. This flare up began in October. He has been to multiple specialists and the have tried many things. It was on January 10 we went to his GP because of the rapid onset of severe pain. So since then he has seen the Rheumy, ENT. Things are not getting better and more symptoms just keep surfacing. Doing my best to stay on top of it to get his to the Cleveland Clinic. Thanks for your input!

[annekat]

I think some people are started on standard WG treatment even without an official dx; if that clears it up, it may sort of confirm the suspected disease. I also had the watery eyes, joint pain, and mainly upper airway involvement, along with ear and hearing issues. I did start coughing a lot more and got chest pain and breathing problems as it moved into my lungs. Eventually, night sweats, moderate fever, and coughing up bits of blood, and a lot of tightness and redness around my eyes and face, and headaches. Extreme fatigue. Developed saddle nose and got positive dx from nasal biopsy. Unfortunately, sometime things have to get worse before a dx can be obtained.

[Il_Randyb]

I was diagnosed in March of last year. I was started on 80Mg of prednisone and that continued for a couple months, then down to 40, then 20, then 10 then 5 and now off for a couple weeks. All in all I was on it March - January. The side affects are pretty wicked for me, sure I got the Moon face and the bloated belly, as well as the easy bruising, those are now mostly all gone. THat's the good news. THe bad news is it severely tapped my muscles and I - a person that prided himself on his physical shape and stamina (interval training and yoga prior to diagnosis) now have problems getting out of a chair or walking up stairs because my muscles are so weak. I also have developed a huge cataract in one eye as a result, I also have a optic nerve palsy that is causing me double vision which is also a result of pred, I also have cranial pressure which has caused optic nerve swelling which is also likely a result of pred. So besides the jitters, the huge emotional swings, etc... that I had while on it, I now have these lingering side effects that I am left to deal with and it sucks. I also have pain in my shoulder, elbow, arm and especially my hands that I am guessing feels somewhat like arthritis, not sure but I am guessing it is also another side effect.

Sure it has had a lot of benefit for me as well but be aware of the long-term side effects and get off it as soon as you can.

[Il_Randyb]

BTW for me personally I think Pred is a great short-term symptoms mitigation strategy. It does not cure anything however, it only deals with the symptoms. Long-term for me I think it is a no-go and I will resist using it in the future even for the short-term. When my WEGS comes back i will strongly voice concern against using Pred in favor or RXMab. I know there is some that think Pred is effective at keeping WEGS at bay but I wonder what the cost is for that and don't tell me there is no cost.

Picked up a cold the other day, sinus congestion, fever kind of cold. Mostly gone now. I have to say getting a cold sucks but it is nice to know that is all it is and it is nice to feel my sinuses starting to settle down without any medications - not even over the counter stuff. I must say my sinus surgery two years ago did a lot to help and it is only now that my wegs is under control that I can see how much benefit the sinus surgery is done for me.

Randy

[annekat]

Randyb, you did very well in getting off pred so fast, compared to a lot of us. A lot of us are lingering between 10 and 5mg and can't seem to get all the way off. But I'm sorry you ended up with the problems you did. Being on 80mg. for 2 months sounds like a long time and I wonder if that could be when a lot of the damage was done. Just speculation, as I really know little about this. Everyone is different, apparently, in how they react to pred. But of course, you are right that we need to get off it as soon as we can.

[Il_Randyb]

I was noodling about all of this and wonder the following - I suspect having weak kidneys is a huge factor in how much of the medication is in your blood. If your kidneys are weak like mine then they are unlikely to eliminate the meds out of the blood systems in 24 hours - then you add in more, and the next day more, an on and on. So 80Mg for me might actually end up being a MUCH higher dosage over time.

Curious if any other folks suffering from Kidney failure have had similar discussions or thoughts on this subject






Randyb, you did very well in getting off pred so fast, compared to a lot of us. A lot of us are lingering between 10 and 5mg and can't seem to get all the way off. But I'm sorry you ended up with the problems you did. Being on 80mg. for 2 months sounds like a long time and I wonder if that could be when a lot of the damage was done. Just speculation, as I really know little about this. Everyone is different, apparently, in how they react to pred. But of course, you are right that we need to get off it as soon as we can.