Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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beekaboo 09/30/2013

Was just officially diagnosed with Lupus and Sjogrens but the SS is more progressive from what I understand. He is starting me on low dose steroids and plaquenil. I told him my concern about steroids. I took them a few times for back injuries from work and they drove me nuts. I'm also a nursing student and I work in a hospital and I know way too much about them. They scare me. I told him my concerns and he said I don't have to take the steroids, he only wants me to take them for the pain if the plaquenil doesnt take care of it fast enough so he prescribed them. They are there if I want them but I'd rather deal with the pain. :/

Just wanted to give an update. I posted on here about a month ago before I saw the rheumatologist.

MButterfly 10/01/2013

Glad you finally have a dx and a course of treatment. Sorry you have both diseases (so do I - along with a couple of others). As with all things moderation is key - use the drugs when you NEED to - avoid them if you're able. I'm no longer able to avoid using them - the pain is just too much (and that's the least of my issues).

You've found your problem(s) and if you treat them now...maybe you won't end up like me.

beekaboo 10/01/2013

Thanks for the reply. My doctor seems really awesome and I feel like I am in good hands. One thing he brought up that concerned me is that if I have a baby one day I will have to be closely monitored. Even though I'm not sure I even want kids, the thought of complications scares me. Do you have children?

RichieD 10/02/2013

Great that you got diagnosed...that sounds much better than worrying about what you could possibly have.

I've read the Sjogren's is associated with lupus in a very high percentage of lupus patients. I was on the steroids for a while, for something else, and they really helped a lot. But the idea of being on them for a long time scares me too.

I would go back on the steroids in a heartbeat if there were any way to avoid those side effects.

MButterfly 10/02/2013

There's no reason you cannot have a child.

Do you need monitoring - of course. Anyone with a health issue should be when pregnant.

But, there's no reason you cannot have a healthy pregnancy.

I was told years ago I would NEVER have children - I had very healthy children.

deleted_user 10/03/2013

Thanks for the update. I am sorry you have lupus and Sjogrens, but glad you finally know what is going on. I don't blame you for being nervous about the steroids. My doc wanted me on them, but I was too afraid to risk the side effects.

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