View Full Version : Boo Hoo :(

06-18-2013, 12:20 AM
This is a bit of a virtual cry... but I can't vent to anyone else because no one else will truly understand. Lupus is soo hard! I'm 35, I've had it for about a year, and have yet had any relief, it just gets worse. I'm on 3000mg of cellcept a day and benlysta infusions. I take Zoloft for depression, prednisone, and pain meds when I have too. My question is.... how do you adjust? My life is nothing like it was. My hair has almost all fallen out(I'm about to resort to a wig)my face has has sores all over and it's as round as a chipmunk. I've gained much weight from prednisone, and I used to be extremely fit, I was a spin instructor and hairstylist for 18 years,and had to quit and go on disability. Now a day's all I care to do is sleep....I'm having a hard time ....the pain is awful. I'm ashamed to admit this but death is on my mind most of the time. My docs say it's a 50/50 chance these infusions will help. If I'm stuck like this, what else can I do? I'm really trying to tell myself about the good things in my life,my family.....but it's getting harder and harder to do things with them. Sorry for the long rant, but no one else could even understand but you, my lupus friends.

06-18-2013, 01:58 AM
Hi Shanna,

First of all, you should never think about death.
Lupus is relatively new to you. Sometimes it takes a long time until the right meds are starting to work for some of us.
I was diagnosed in 2006 and just know have the right mix of meds, that are helping. That doesn't mean it is going to take that long for you, because I have liver problems, due to the Lupus and can't take a lot of the meds, that are usually given for Lupus.
We are here for you and you can rant as long as you want, we do understand.
I hope you can get the help you need.
Has your Rheumy ever suggested MTX? It is the only thing, that helped me.
Take care, honey.


06-18-2013, 06:07 PM
Thanks for the response, It has been hard and it's not like I'm choosing to think these things. And yes, I've tried mtx and plaquenal. So, I'm just a bit scared that this new therapy won't work, then what??? However I'm also trying my best to stay positive, that post was my way of venting and trying to get advice on how to accept this.

06-19-2013, 04:52 AM
hi shanna, it is hard to understand what our body goes through. even doctors do not fully understand how the immune system really works. I believe that getting the balance right can make life easier, and getting it wrong can make us very sick, and yes suicidal. and it is not unusual for us to have to adjust our medication ...... to adjust to what the lupus is doing to our body. I have had lupus for over 35 years, and only diagnosed for about the last 4. I am 51 and also on disability. please read my profile and my blog, to learn a little about me.