Prednisone can be VERY toxic and used long term yes, it CAN or CAN'T cause of the listed side effects. However, I like Patty wouldn't be able to function w/o my prednisone. I've been on the stuff for almost 15 years now, and NEVER been on it below 10mgs for more than 4 weeks. The highest I've ever been on it is 100mgs daily for 3 weeks.
I have loads of organ involvement and w/o the prednisone I would bet that I wouldn't be writing this post right now. Yes, it's great to try to be positive and have a great attitude but we're not all the same and some of us flat out need prednisone and a place to vent away. It's hard to hold all our feelings in, lupus is a tough disease to live with.
I know with my lupus my lungs and heart are so badly attacked I've been on oxygen for 6 years now and am on oxygen at 3 liters. Been at these numbers a long time, I can't breathe w/o my prednisone, I don't care that I have a moon face, that my ribs are breaking because of my osteoporosis, my buffalo hump will never go away, my skin is so thin that you can see my blood vessels thru my skin. I look like I've been beaten over and over again. However, I can breathe with that prednisone and trust me feeling as if you're suffocating it's a terrible feeling and a terrible way to go thru life.
I've taken all the medications and in the beginning it helped me, now I just don't respond to any medications but the predisone. Yes, I've developed leukemia along with my lupus and RA, but that's okay. This is the card I've been dealt in life and I make the most of everyday. I remember to tell those I love that I truly love them everyday. Most of my days are bad and my pain is never ending, but I don't lay around in bed feeling sorry for myself, I get up and do what I need to.
I agree that you can go into a quiet period, I was in one for about 4 years straight, then I started flaring again. You need to have a great Rheumy that is willing to be opened minded about all options available to you. You need to be open to possibly seeing a therapist to help with your chronic pain and depression if you have those issues. Lupus is known as the disease of 1,000 faces. None of us will present the same totally.
I say see your Rheumy and if things don't go great between you and your doctor. Then try a different one until you find the right fit. Sometimes we can go thru several Rheumy's before finding the right fit. Keep a journal of your pain levels, where is the pain at, and the symptoms you're having. Take photos of rashes you have or get it will help your Rheumy. Rest and exercise is great for you, just don't overdo it. Always, listen to your body and rest when it lets you know that Yoshi need the rest. Trust me you'll know when your body is talking to you.
Don't lose hope and have a ton of despair, lupus isn't a death sentence. It used to be but Dr's have made a lot of progress with treatments for us. If I can answer any questions for you regarding prednisone just ask away. If you have any about any of the potential iimmunosuppressant drugs out there, I've taken them all, but Gold Injections.
When you're down and feeling bad, come here and vent. We all do it and we all support one another. We all understand what you are going thru. I'm sorry that you're miserable and in such pain, hopefully your Rheumy will get you feeling really better really soon. Welcome to the forum and we're here for you.
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.