Side effects

I know this goes with other issues lupus sufferers are going through, but it also goes back to the issue I struggled with about taking the 60mg of Prednisone/day that I was prescribed...

I went to bed last night looking like me and woke looking like a perverted version of myself. I had 2 Dr. appts today but I won't leave the house. My husband is out of town so because my hands are swollen I don't want to drive even if I would let anyone see me. We are supposed to go to San Diego Saturday for our Christmas vacation and I don't want my family to see me.

I decided not to take my med today to see if the swelling goes down, but I never expected to look so horrible.

Has anyone else ever had it come on so fast?

First off please tell me you at least called the doctor to notify him/her! If you didn't you need to right away! Secondly, I am not sure that I have ever heard of the swelling coming on that fast, while 60 mg/day is high it certainly not extremely high, as I have given 60mg (IV) every 6 hrs. Good Luck, please keep us posted.

I just left a msg with the doc. I should have done that, I know but I had been having little of the side effects I had expected. It just caught me by surprise and I basically told my husband I would rather die looking normal than live looking like this. I know depression goes with this disease but this isn't depression this is a rational look at cause and effect. I am on so much because of nephritis, but I am weighing quality vs quantity of life. Benadryl is helping enough that I can see now (that is how swollen my eyes are) but I refuse to leave the house. Thankfully Christmas is over and shopping is done. Just don't know if I can go through this. Thanks for the reminder to call the doc.

You absolutely can NOT just stop your prednisone at that dose- very dangerous and can even be life threatening Prednisone must be tapered slowly or you can have an adrenal crisis or a very severe flare of your lupus. 60 mg will alter your appearance with the moon facies, weight gain fluid retention etc but it is temporary - and hopefully you will come out the other side with your kidneys still functioning. Getting fat etc is a minor inconvenience compared to being on dialysis as a worst case scenario. None of this is easy and certainly will make you wonder why you have been given this cross to bear- hopefully your doctor can help you get through this with less distress than what you are currently facing. I once was on prednisone 60 mg for a full 2 years- same reason for my kidneys- and 40 years later I still have functioning kidneys even though initially dialysis and transplant were on the list A dreadful time for sure but worth it in the long run

Thanks Poobie,

I just don't think I can do this. Everyone here has been wonderful and supportive. I have had medical issues for years, but this is just simply overwhelming. I am hoping that the swelling gets a bit less and my mouth a bit less sore before my trip. I will re-evaluate continuing treatment after my trip. My husband is so excited about our trip that I want it to be as wonderful for him as possible. Just don't think I am strong enough to fight this...

If i were you I would've already visited the ER. Any adverse reaction needs to be reported and treated by a dr. ASAP.

Hi ...I live in Vegas too...I use to be on 60 to 100 mg for 21/2 that time it saved my life, I had ITP from Lupus...but yes I did get the moon face and swollen but not like your describing, I would definetly call your Dr.... yours sounds more like a reaction to some medication. Before you lose all hope your Dr. and talk with him/her......
Hey hope it gets better....
With love and gentle gentle hugs.....

Hi DeAnne,

I was first offered prednisone in the day unit when they had me in through swollen joints and my organs playing up and i totally refused it being a steriod but i do know it can react quickly.

I'm so pleased members are responding well "Thank you" :)


I have been on and off prednisone for the last 20 years and I have never swollen that fast. If it is water retention they can give you a diuretic to help with it. I understand the feelings of being sick of being sick sometimes I think 20 years is just enough then I remember my sons 20 birthdays, and 20 Christmases with my family and 20 more summers to look like an old film star all wrapped up like a mummy lol and it all gets put in perspective. Do see your doctor to make sure you arent having an adverse reaction since prednisone builds up in the system over time it may have taken a while to show up. I hope you are better soon .


Hi there!, yes i've had this once -maybe twice, and it's not a good site for ourselves, never the less for others to see us like that. People stare and those questions that we don't WANT to explain over and over again. So i just say it's all part of the LUPUS to be short about the other questions they may want to ask!!! But of course i stay as calm as i can ...LOL LUPUS has a mind all of it's own and don't care what we are doing or the plans that we have , nor the things we want to do. Sometimes i Zone out as if it's not happening - but that only last for a moment of course !!!! I have SLE and arthritis along with the butterfly rash in my face (picture that in the summer ) it's a horrible look , but lately i've got it under control ( not speaking to soon - it will FLARE UP-smile) . But i understand your point of view - tired of going through the changes with LUPUS!!!! well hope things get better for you, talk with you later...Beverly L.

My butterfly is saving me rouge money. People say I look good and healthy. Ha!


What a wonderful way to see the "silver lining". My face is getting eyes now look like mine.

Hi Latina,

Your comment as made me laugh because when i had it, i looked like someone out of a circus who'd been burnt with an iron the redness was so deep but at the time i'd not got a clue what it was.

Hugs Terri xxx

Latina said:

My butterfly is saving me rouge money. People say I look good and healthy. Ha!

The last time a doc told me that I looked better I passed out on his arms on my way out of his office. He swore to never tell me again!

"Nice one" Latina that's one way of convincing them :)

Latina said:

The last time a doc told me that I looked better I passed out on his arms on my way out of his office. He swore to never tell me again!

Now that's funny !! Hope that you were alright ???? I bet the doctor was scared and couldn't think what to do !!! We have to laugh to keep from crying -smile ...Beverly L.