Thursday, February 9, 2012

Another one bites the dust...

Lupus sucks. Drugs to treat lupus are far, few, and very sucky as well. I have been on plaquinel, steroids, methotrexate and CellCept. Of these, only CellCept has done any good...

Which means I just received a phone call saying that my latest blood tests show a continuing drop in various blood cells, and it looks like CellCept may be suppressing my bone marrow [production of blood]. So as of now I have no treatment for lupus, low enough cell counts that I am at risk of spontaneous internal bleeding or stroke, and an immune system so suppressed that, while it could still kill me, it couldn't kill the wimpiest bacteria even if given antibiotics.   Lupus sucks.



Update 22 Feb 2012: Just got told that my request for Benlysta has been rejected by the insurance company. Which means that either my rheumatologist figures how to appeal their decision...or I'm pretty much screwed, frankly. There aren't that many drugs left for me to try. Here's hoping and praying my rheumatologist pushes things through. She's pretty good about that kind of thing, so I havae some hope.

12 comments:

  1. Oh this is so very sucky news. Sending a gentle hug. And I'll be casting on your gloves very soon.

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    1. Well, it certainly put me near minor nervous breakdown of the week #2. However, the good news is that my rheumatologist called, and while she agreed with my other doctor that I have to stop taking CellCept NOW, she gave another option. With my permission, she's going to try to get her insurance pre-approval specialist get me approval to start taking Benlysta, which she says has been very helpful for another patient of hers. (Benlysta is a brand new drug; the first one *ever* designed for lupus). For more info: http://samvskitchen.blogspot.com/2011/03/basics-of-benlysta.html

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  2. Praying for the Benlysta to work for you, and DebbieR, you're a peach.

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    1. Right now I'm concentrating on a) not picking up any bugs that would send me directly to the ER (including minor colds) and b) not spontaneously bleeding or having a stroke or something. Then I'll worry about Benlysta working. And yes, DebbieR is a peach.

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    2. Awwww....thanks ladies. And, yes, thanks to both of you, I've read about Benlysta. I'll keep sending positive thoughts that everything turns out just peachy! Alison and I had a too-short visit today, and chatted a bit about doing what we can. I'm happy that I can do something to help a little bit. Oh, and I will play tag with the ocean tomorrow, for all of us!

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    3. Have fun ocean-playing! The closest I get these days is watching David Attenborough documentaries on the sea/oceans of the world. Not quite the same, but at least I can watch otters play again, albeit not quite so personally.

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  3. I really hope this works. It is so hard to know how your body will react, but it sure is your turn for a break. One of my friends just went through something really rough--makes your problems look sort of manageable--and admitted to having kicked a hole in her wall. She posted a photo on facebook. I thought it was the right thing to do--under the circumstances. I wouldn't suggest that you try it, because of the added physical stress and accompanying risks (and the fact that you're probably renting)but don't feel bad about having a a melt down in some form that works. If you want to rant, I will listen (or read). Your mom can vouch for me as a good listener.

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  4. LynnM from your mom's commentsFebruary 13, 2012 at 1:45 PM

    Popping over from your mom's blog to wish you well, and wouldn't have commented except your comment about David Attenborough made me smile. My daughter is a big fan because a friend of hers wrote him a letter when she was a small child and he responded personally, as he does for all children. It's a wonderful world. Take good care, child of a virtual friend. And I can't wait to see Debbie R's mitts!

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    1. I love David Attenborough's shows. I think I've watched most of them at this point. I think it's partly because it's so easy to see that he genuinely loves the animals and natural wonders that he is presenting. You can't fake such a childlike delight and wonder as you see on his face when a monkey swings by him or a meerkat stands on his shoulder to watch for danger.

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  5. LynnM from your mom's commentsFebruary 13, 2012 at 2:17 PM

    Have you seen this? http://www.youtube.com/watch?v=B8WHKRzkCOY
    It was a BBC "promo", as you know BBC doesn't run ads per se. I think it stands up against the best videos of our time.

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    1. Oh, that's just beautiful! (And I normally am not a big fan of that song!) It so captures Attenborough's general demeanor and attitude in all his work. I've never found another documentary author/narrator/whatever that I like half as much as Attenborough!

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  6. I couldn't have said it better: lupus does suck, though I wouldn't know from personal experience. Adding my prayers to those already sent your way.

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