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Community Voices

If you knew before taking a medication that it would cause cataracts, would you still choose to take it?

Have been on this medication, 6 months for my Sarcoidosis and now have cataracts in both eyes caused by the medication
#Sarcoidosis ,#chronic pain, #Pain ,#Prednisone ,#medications ,
#side effects,# cataracts,#why me

3 people are talking about this
Courtney R.

Struggling With Self-Esteem When MCAS Treatment Changes Your Body

I had just said goodbye to my son at school two weeks ago and while walking back to the car an acquaintance yelled across the parking lot, “Congratulations, when are you due?” Stunned, I said, “I’m not,” and walked quickly in the other direction. Even writing this I cringe — it is not the first time and I suppose won’t be the last time this has happened to me, but I still haven’t figured out how not to be jarred by it. Logically, I know that I have no control over this — I take a medication daily that allows me to eat foods without reacting. It keeps me from having anaphylaxis when I go outside my bubble and keeps me stable when I am faced with my medical hurdles — like getting a COVID vaccine, having surgery, or receiving iron infusions. But the medication also makes me swell, it makes my face rounder, it makes me gain weight and yes, it even makes me look pregnant some days. I obviously know this; I am living within my body, uncomfortable and frustrated when I see the changes in my appearance, but when someone else says it out loud, the words sting in a different way. By the time I got to my car, I was beyond upset and embarrassed. I have hesitated even writing this post, not sure I could expose this moment to others, but I also know I am not alone in experiencing this. A day or two later, a woman posted in my rare disease Facebook group a photo of herself looking six months pregnant and asking if this happened to others. Unsurprisingly, many responded sharing their pain and frustration with this appearance change. There are so many of us who live in bodies altered both by our diseases and also the side effects of the treatments and medications meant to help us. Many times, this means losing our pre-diagnosis physical self. And while everyone says it should not matter how we look — it does. As I look in the mirror, I remember what I once was, longing for the days when I did not have to think about someone mistakenly asking me if I am pregnant. When getting dressed did not seem like such a challenge, never knowing exactly what will fit from my closet. Hoping I do not look too swollen in my face for an important zoom work meeting or worse yet, having to be in person at a work event. Hoping every day that my diseases will stop being visible. As I have reflected on this over the last two weeks, I am sad that so many in the rare disease world feel ashamed by their appearance. What does this say about our society and how ingrained we are to look for “normal” when people for so many different reasons will never fit that mold? I have realized that the problem isn’t about being asked if I am pregnant (though I would suggest not asking someone this), the problem is how disappointed I am with the reflection I see in the mirror staring back at me. Why can’t I still feel beautiful even on the days I look swollen and red? Why can’t I still feel confident in myself when I am not my usual petite self? I know I need to try to find a way to feel good and beautiful in my body — not for others, but for myself. I know some days this will be easier than others, and this is OK too as long as I am kind to myself and remember that rare can still be beautiful. That I can still be “me” even if some days I do not see myself in the broken reflection looking back at me. And to the many others who live this reality with me — please know I see you. I support you. I stand with you. And I remind you just as I remind myself: we are beautiful, we are strong, and while we may be rare, we are not alone.

Community Voices

I get my new med on Thursday and start with an injection right away. I am an 'old' nurse and am pretty comfortable with shots, but this one makes me nervous. Maybe it is the unknown of the med, combined with it being the 6th one 1 have tried and Dr. said there isn't any other to try... Either way, I am praying and keeping positive that It Will Work
#ChronicPain #Sarcoidosis ,#Sleep ,
#Prednisone ,#Asthma ,#exhaustion

2 people are talking about this
Community Voices
Community Voices
Community Voices

Will 60mg Prednisone Daily cause moon face and weight gain?

I have just started 20mg 3x daily when do side effects appear? Did you gain weight instantly? How much? I am having biopsy for #GiantCellArterisis and I already have body issues. I am petrified of all the side effects. I am also being given it for possible Polymyalgia Rheumatica. If anyone can give me some information I will greatly appreciate it ☀️
#Prednisone #MoonFace

6 people are talking about this
Community Voices

How soon did Prednisone side effects appear

I just started talking 20mg #Prednisone 3x daily = 60mg. How soon will side effects appear? #weightgain How much weight did you gain & was it suddenly? I am having biopsy to diagnose #TemporalArteritis on Monday and there’s also possibility of #PMR Any information would be greatly appreciated ❤️

Community Voices

I am so afraid humiliated right now. Anyone who has de this

I have had serious health problems since I was 26 and I am 56!!! I am not going to list them ALL, just the 3 newest ones. Spinal Fusion last August (still in pain) Cement injection into T5, and the cherry on top =suspected #temporal Arteritis! I had #crp Labs and SED Rate 3 days ago and will get results tomorrow. I feel shitty enough about myself anyway so being on #Prednisone ( on 20mg 2x daily. I am petrified of getting #MoonFace I am not a vain person, but I cannot handle people asking me why I am so fat! I already have Depression and Anxiety so being humiliated about ANOTHER

1 person is talking about this
Community Voices

Was recently dx with lupus cystitis they say it’s rare I live in Saint Louis near one of the world’s highly ranked hospital #BarnesJewishHospital and I’m the first case they’ve ever seen in person its when lupus attacks the bladder, I just recently finished a three day course of 3,000mg prednisone and my first dose of cytoxin chemotherapy it’s gotten off to a super rough start haven’t felt well enough to do much more #Fibromyalgia I’m tired but there’s still too much to fight for

4 people are talking about this
Community Voices

Weight from medication #Medication #Prednisone #weightgain

I have gained 45 pounds in less than 2 months from Prednisone. When I was hospitalized for a week they even gave me 100mg shots of it. I estimate that over the course of a month and a half of taking it I took a total of 2,650mg !
. I’ve been off of it for 3 weeks and I’m still gaining weight rapidly for no reason, yet my body size hasn’t changed at all. I’m wearing clothes from before the hospital!
. I do Pilates, and go for walks, I’ve been eating approximately 1800 calories a day. I gained 10 pounds this week.
What fresh hell is going on??
What can I do about it??
#Prednisone #Steroidssuck #help

4 people are talking about this