Brand new and reeling...

Hi Everyone...

I just got my diagnosis on Thursday. The rheumatologist is still taking about 7 vials of blood trying to narrow down my exact problem but he said Lupus. I've had inflammation in all my joints for 9 months along with carpal tunnel in both hands. I had a really bad fall last September and it seems that all my problems began right after that. Besides the joint stiffness and pain, certain foods would go right through me and I've lost close to 40 lbs. I've changed my diet to gluten free and vegan and I haven't had diarrhea since. The doc also says I need to take a low dose aspirin daily because of clotting issues. I started Prednisone yesterday and noticed a huge difference already. Is this possible?

Any words of encouragement greatly appreciated...

It's good that you and your dr's caught this quickly. Just take 1 day at a time, listen to your body, avoid sun exposure and stress, don't over do it.

I figured out that milk/meat contaminated with antibiotics tear up my stomach. I can tolerate anti-biotic free products much better. It's not unusual for lupus patients to have adverse reactions to penicillin or other anti bionics in the same family. Might be something for you to consider if you haven't already, since you mentioned a vegan diet. We're trying to go with just a more natural diet. I've cut out all high sugary drinks, no aspartame either, I drink water almost exclusively. We try to do more cooking from scratch. And avoid products with antibiotics, hormones, dyes, etc.

Hope this helps. Thankfully you have your dx and can start learning how to deal with this. It can be disconcerting at first but eventually you get used to some of the crazy things lupus can throw at you.

Welcome to our forum DrEllie. I too am glad you have a diagnosis and can begin therapy. If you've had a very active life and get struck with the mind numbing fatigue along with the pain, most of us go through the stages of grieving. Grieving for your old life. So don't panic if this happens. It really helps to come here to vent.

I recommend anyone newly diagnosed to buy "The Lupus Book" by Dr. Daniel Wallace. I think it's in 5th edition now. It can get a bit technical, but the "Dr" in front of your screen name makes me think you will find it very informative.

Plaquenil is a medication originally used to treat malaria, but in WWII they found soldiers who had lupus felt better after being treated with it. The downside is that one can take it for a few months before the therapeutic effects are noticed. I've taken it over 10 years and can still tell if I forget to take it.

I've been sick lately, so I probably won't be tracking you, but there is always someone here to give advice or simply listen. So please keep us posted Dear. Love, Butterflake