I was hoping that here I could get some advice and feedback from those who have this disease and those who have loved ones with Lupus. Thank you in advance for any help you can give me.

Becka

I'm sorry to hear that your boyfriend has Lupus. I'm taking it that it's Systemic?

He is an unusual one. Lupus isn't all that common with men. I mean, yes- men do have it. It's just that women tend to have it more.

Hopefully, there are some men with Lupus within the group that won't be shy, and can give you some feedback.

All I'm gonna say is that you both need to be open to anything. And by that I mean- open to trying whatever the doctors say to do. No matter how frustrating. Also, open to the fact that he's gonna go through depression as well. It's just a part of the disease process. Some people even go through a grieving period, because they can't do what they used to be able to do. So just take things as they come.

Hopefully, the doctors will be able to make him comfortable quickly. And then he'll feel less pain and be able to do more. If not, just hang in there with him and be there for him.

In the meantime... should any questions come up that either of you want input on- just ask us. We'll be happy to share what we know. And if you get frustrated- let us know. We, in the group, have really broad shoulders and are great listeners.

Amy

He's going through a really bad depression spell now and refuses to take medication for it that his doctor has perscribed, or even acknowledge that he is depressed. It's really frustrating for me because I'm trying to understand, be patient through the ups and downs from the steroids he takes, be the upbeat one when he feels that his life is now over. I'm glad that I decided to seek out a group that can help educate me on the personal effects of lupus. Maybe I can get him to join up here soon. Thanks again.

Becka

It's often hard for people to realize that they really are having depression. I know that before I had actually decided to take something... well, lets just say that I ended up locking myself in the bathroom, crying, for a couple of days. Then I realized that there was something wrong with me. Depression. And then it took several tries of different meds to have the right one work.

Also, I've seen studies where chemo has actually worked for some Lupus patients. I found that interesting.

Well, Becka, you hang in there. I do hope that he will come join us sometime. We aren't doctors, but I do feel that we all know a lot.

The best advice I can give you guys is 1. TAKE YOUR MEDS...it seems like a no brainer but... This disease can really, really hurt and the meds make the pain diminish. 2. (here is another biggie) FIND THE RIGHT RHEUMY DOCTOR. The first one I started treatment with sucked. A major a**hole. He didn't listen to me, didn't believe that I was in soooo much pain and told me to back off the pain meds,or answer any of my questions and it just wasn't a good fit. It is hard for people to understand how it feels on the inside. Basically, I bet your husband looks perfectly normal and "healthy." But ask anyone you have no idea what it feels like unless you have experienced for yourself. After 3mos of meds, I was still getting worse and worse everyday. I thought I would never reach the bottom. I got really depressed as well. I currently take an anit-depressive. There is no shame in taking meds to help ALL areas of the body. Try contacting your local lupus foundation (if you have one) and ask for a referral for a lupus specialist. It was the best move I ever made. I LOVE my new rheumy. He understands everything, explains things and is worried about me as a person not just a disease.

It won't lie to you. It is going to be hard on you both. Knowledge and support are the absolute must. This is a great place to share, ask questions and talk with others that are going though exactly the same type of thing.

http://www.nlm.nih.gov/medlineplus/lupus.htmlalk

lupus.org

http://lupusbutterflies.ning.com/

3 other places to visit in your free time...hahah

As the wife....that's hard. You are always allowed to cry. I give myself one good boohoo session a week. Just to let it all go. It will be harder for him bc his a guy (maybe). You need to be his rock. I don't think that I would be the same without my boyfriend and families love.

He definitely needs to start getting labs and meds started. It will be trying but I have faith and know that lupus can be managed. My mom has has it for 15yrs. And right now I'm the little ole lady that her mommy sometimes has to drive her to her doctors' appt, help me unload the car, or whatever.

Be positive. LAUGH AS MUCH AS HUMANLY POSSIBLE. You guys have been dealt a crappy card like the rest of us but it gets better. Please let me know if you need anything.

-Heather