Hi Robin I hope that you still get on here once in a while. I have had Lupus for the last 15 years.  I almost didn't make it many of times through my Lupies Journey. It causes my body to have hemolytic anemia. I am having the sleeve in July and I am scared like crazy.  I found this website and it is wonderful!!! I was just trying to find someome to relate with.  If you read this by any chance please let me know how you are doing and how has your surgery progress going?

Marena

Interesting to hear you symtoms as my surgery date was 12/9/02, starting having weird symtoms during pregnancy 2/04 so about 15 mths out but they attributed to the pregnancy because reg. bloodwork was normal such as cbc, no REAL test for anything, but began begin sick with one thing after another starting with a simple cold in 1/05 POST BABY, until i was basically bed ridden and diagnosed with leukopenia in 5/05 and recurrence of mono. Things spiraled out of control feeling I couldnt figure out why I was sick sooo much not thinking or remembering I was a sickly kid. Wasnt diagnosed with or even tested for anything until my hair started falling out badly in end of 2009 and started having a lot of scalp sores, then I received a dx of MCTD, LUPUS, and Fibro in feb 2010.  But because I had dabbled with a street during the time of getting no answers family/doctors were convinced that since I only have 2/3 markers that it wasnt really lupus. So I quit the drug use and started looking for answers on my own, I am shocked at home common lupus is post op, I am almost sure I probably was predisposed to have it, and the few yrs of torture my body went through for my surgery,birth, another surgery, drug use for the 1st time, just sped things up for me. I have since learned that my particular surgeon actually bypassed more of my intestine that was allowed (he no longer practices and has no ins) so i have to triple or quadruple my intake of EVERYTHING in order to maintain any health, which as a gastric bypass patient you know thats difficult to get the minimum let alone multiply.  And getting anyone to believe your sick when you look normal(minus being bald) is hard enough!! I am grateful for the new yogurt that has protein because its close to liquid form which allows more protein in because meat of any kind is next to impossible for me at all. I know just being here and getting affirmation that Im not nuts and these are real problems that happen to real people gives me comfort, and i am hoping any info anyone can share will give me insight on how to move forward and not give up completely. I noticed other have had to be put on iv nutrition, didnt even know that was an option.
Also along with these problem have you have any problems relieving your bladder, such as urgency then nothing comes out??

Great news! I also have SLE (diagnosed 2003) and Fibromyalgia (diagnosed 2001).

You are blessed, as I was, to find a surgeon who would perform the procedure. especially since you have multiple autoimmune issues. A lot of surgeons won't touch a lupus patient for elective surgery!

My surgeon kept me in the hospital for a week to make sure the trauma of the surgery wouldn't cause a massive flare. My weight gain was helped along by long term prednisone. Highest was 405 pounds, surgery day was 397.

I'm now 5 pounds below my goal weight of 160. my weight had been stable between 170 and 180,taking into account about 15 - 20 pounds of loose skin.

As you get further out, you may find it a challenge to keep your weight stable, meaning not losing weight unintentionally. I'm in awe of the calories I consume, thogh calorie counting is not part of the DS repertoir, I was just curious one day. I added up everything in my food log, and it came out just under 4000 calories! With *no* junk food!

Be well, DS lupus sister, and count your "spoons" carefully! (Google - The Spoon Theory)

My first severe flare post-op happened a couple weeks ago, and I had to take a prednisone taper for the first time in a long time. I was down for about a week and a half. I had a mini flare with fever in August, the week before classes started. Lots of stress in my life these days, and that's undoubtedly what brought on the flares, along with the change in the weather.

I have had lupus for over ten years .. predizone works good but makes you fat .I have been on Plaquinel for six years, never had the itching but my gums started to get dark almost black spots,they pair it up with methotrexate  didn't make me sick like it dose to most people worked great for about two years,only small flares energy levels were okay .as far as hair loss it helped mine the top of my head was almost bald anyways and helped with the rash on my face some. As for pain if you have lupus I have never found anything to work well on that. after taking so many meds for so many years.I just want to tell you there is no magic pill. A positive attitude healthy diet and roll with the punches is my best advice.

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