Some of the medications we take to treat Lupus are awful. Prednisone is a treatment a first-line treatment used for most of us. It works fast and its effective; however it has a lot of side effects. None of the side effects are easy to deal with and I have had almost every one of them at one time or another. It is absolutely no fun being a woman over 30 years old and having cystic acne like a 14 or 15 year old. Being on a dosage so high that my stomach growling in the middle of the night woke my HUSBAND up as well. I was so very miserable. The weight settled in my face and I had the moon baby cheeks and a basketball head. When I smiled I had no eyes all you could see was my teeth and my cheeks.
I was so swollen from edema (water retention) that my hands looked like they weight 30lbs each. I wasn't able to take off my wedding ring for about 3 years. On top of the 80mgs of steroids per day I was starting Cytoxan as a treatment for my kidneys. I thought I would lose my hair so I cut most of it off so I would not be as upset if I wound up bald. My self-esteem took a huge hit during that 3 year period.
Prednisone Pros:
- It is fast acting
- decreases inflammation in joints and organs
- suppresses our over active immune systems quickly
- IV steroids can help control flares
- steroid injections can be injected directly into muscles and joints for relief
Prednisone Cons:
There are patients out there that will not take life saving medications; even on a short-term basis; because they do not want to gain weight. Some have gone as far as to lie to their doctors about taking the medications just to get the doctor off their backs. Recently I met a person with diabetes that stopped taking her insulin for 3 months because she said it was thinning her hair out. Her blood sugars were out of control and she refused to take her medications because of her hair! I could not comprehend that she was okay with possibly losing a limb or her vision but not her hair?
Before I started chemo I met a patient who had refused to take Cytoxan because of the possibility of hair loss. She was very surprised that I had decided to take chemo and even tried to talk me out of it. Meanwhile she was on dialysis and trying to find a match so she could have a kidney transplant. I kept thinking " my hair can grow back but my kidney can't!"
We all can be a bit vain about ourselves in some form or fashion. I definitely understand that for instance I love my big red lips! The one thing I know is that no amount of vanity is worth my life. I may not like it but I'm willing to lose my hair, gain weight, and be covered in zits again if it means that I will eventually be over a flare and back to my normal self in a few months. Is being thin and having a hair worth YOUR life?
The weight gained from prednisone can be lost. If your hair thins or falls out buy a wig or extensions. The things you can't get back are lung and/or kidney functions. Once they're gone they're gone. Make informed decisions regarding your treatments and always talk to your physician. If it concerns you then they need to know about it. It isn't fair to you OR to the doctor if you are tying their hands by not telling them the truth.
I wont lie and say this wasn't a rough time period for me. It was a struggle but there was light at the end of the tunnel. If I could go thru this and feel better then it was worth it. It was an easy choice for me: steroid fat trumped being dead. Talk to a therapist about it and/or join a support group. There are people that are just like you out there that can talk to you on a level that you understand. We've gone thru what you have gone thru.
The picture below is during my first chemo treatment. They took pictures for patient charts for ID purposes. Since I was also an employee as soon as I lost the steroid weight I made them take another picture ....vanity.
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