World Lupus Day


May is Lupus Awareness Month.  May 10 is World Lupus Dayworldlupusday.

A few days ago, I started experiencing the all-too-familiar signs of a lupus flare ramping up.  My joints started aching, and I started having hives around my hairline and neck.  Sure enough, I woke up with my skin feeling like it was sunburned.  When I got out of bed, I noticed my thighs were covered with red blotches.  My back and arms were red and lumpy.  My feet and shins had new vasculitis lesions.  I was covered in sweat and running a low grade fever.

There’s nothing I can do about this flare.  I just have to deal with it and hope it doesn’t get worse like last year.  I’ve blown through all the pharmaceutical options to treat lupus.  My insurance carrier is reviewing a “second level” appeal from my doctor for IVIG therapy.  It is the only therapy that works for me.  If this second appeal is denied, I will be out of luck.

Did you know that in the last 50 years, there have been no new drugs developed specifically to fight lupus?  Currently, the only drugs on the market used to specifically treat lupus are Plaquenil, prednisone and aspirin.  How pathetic is that?  Instead, doctors have had to use “off label” medications like chemotherapy and other immune suppressors to fight lupus. All have toxic side effects.  Sometimes I don’t know if the drugs are worse than the disease itself.

The video  below is entitled  Faces of Lupus. Pray for a cure.


4 responses »

  1. My best friend has lupus, and I just emailed her to tell her about reading your post on World Lupus Day. Not sure if she knows about it or not, but thanks for informing me. She doesn’t have as many complications as you do, more like she gets flare-ups every now and then, so I guess there are milder forms of lupus? She doesn’t talk about it much, but I ask her every now and then how she is feeling. I just don’t want to be annoying about it either, so it’s hard for me to know what to say. She lives in another state so I don’t see her often and only talk to her by phone and email. Anyway, just wanted to say that I’m trying to be more aware of this disease, and thank you for speaking out about it!

  2. I do, I do! My sister and so many good people have this disease. The awful thing is it affects different people so differently and it can go for so long being misdiagnosed. I think Lupus and all other auto immune diseases need to be more heavily focused on! You are always in my thoughts too! Hugs to you!

  3. Hope you’re feeling better since the flare-up. The whole thing must make you want to hit something with a stick. If I lived nearby I’d offer you my big butt if it would make you feel better:) I guess I should figure out where you live before I go about offering such things – lol.

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