Wednesday, October 30, 2013

More News on the Lupus Front

It is very exciting to see all of the ideas, research, advocacy, and funding for even more research that is coming out when it comes to Lupus! I have gotten at least 4 emails just this week alone about things that are just incredible when it comes to the realms of Lupus!

Here are a few URL's for you to read:

this one above is about the Advancement of Care when it comes to Lupus through Research and Advocacy. Novel research through genetics that will come to target of drug development to help in the fight of two very serious complications that happen often with Lupus, which is kidney damage and damage to the heart. As of now there are 30 different clinical trials that are going on for these two particular complications in themselves. The more clinical research going on though means the need for more patients who meet the criteria and are willing to go through these clinical trials. Several other issues were addressed, along with these, and you can read about those also in the URL above...

As with all of our clinical trials for possible Lupus medications, as well as other Autoimmune Arthritic illnesses, we must have change in the factors of getting insurance companies to pay for the drugs once they are on the market and out there for patients.

I realized through my own illnesses, the medications are extremely expensive. If my insurance decides not to pay for any of them, I would not be able to afford them myself. So, we must continue to advocate in order to make sure that we have insurance companies who are willing to pay for these medications as they are approved by the FDA and out there for patients to use.

This next one is difficult for me to believe, simply because just about any time I "flare" with my Lupus, I begin with a headache, that I often refer to as a "Lupus Migraine". It will not stop with just "pain medications", no matter how much you throw to try and stop it. The ONLY thing I've found to halt the horrid pain of one of the headaches is corticosteroids. I can get an injection of Solu-Medrol, along with a 14 day step down packet of prednisone, and about 18 hours later the headaches begins to subside. So, to say the Headaches are "not" related to the Lupus Disease and its Activity seems wrong to me. But, that is myself, and not everyone as a whole out there. That would be a great poll to take, on the average how many of us have some form of a migraine, or headache when we have a flare coming on ? It would be interesting to see what statics we came up with as far as us and headaches.... Here is the URL:

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