Tag Archives: mad

Lupus Warrior

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knight-4I’ve been preparing for a battle.  And I’m now ready to charge full speed into the messy underbelly of the healthcare industry.  I haven’t posted much this month but I’ve been very busy dealing with new health issues.

I’m in the process of writing directly to my insurance carrier, requesting an appeal of their decision that denied treatment for systemic lupus with intravenous immoglobulin (IVIG).  Last year, I had 3 rounds of IVIG with total remission.   This stuff is expensive (about $15,000.00 per infusion), so obviously they don’t want to shell out that kind of money on a regular basis.  Unfortunately for me, this is the only treatment option left.  All other medications have failed.

I’m sick of their bullshit denials.  This means war!

I saw my doctor a few weeks ago.  A new rash  developed on my arms, legs and chest.  It’s red, raised and bumpy on my torso, and flat on my extremities.  It’s actually layered on top of the recurrent SCLE rash that flared up in January.  The January rash was fading somewhat and then this new one took its place.  My doctor told me this new rash is small vessel vasculitis.  Currently it’s affecting my skin but he said it can progress to the kidneys, eyes and brain. I have to watch out for areas of the skin that may ulcerate.  Left untreated the skin could become gangrenous.

Fortunately it’s not summertime … yet.  Hot and humid weather makes this stuff worse.  My clothes cover most of it and even though it’s on my forearms and neck, it’s not so bad.  Makeup covers the hives on my face.  Then again, maybe I’m just used to looking at it.

The rash is everywhere on my body, but this photo pf my leg shows both types of lesions.  Some are red, flat and carpet-like.  It feels like a sunburn and is hot to the touch.

img_03912The vasculitis is small, round and dark … about the size of an eraser head.  It hurts but does not feel like a sunburn.

That’s why I’m fighting.

I’m beginning by writing the insurance company a letter.  I’m sending them photos of my skin like the one you see here, as well as others that are too gross to post.  I’m gathering published data from the National Institute of Health with evidence of  clinical trials of IVIG on patients that have systemic lupus and small vessel vasculitis and have gone into remission.  I’m also contacting the US manufacturers of IVIG.  Parmaceutical companies are interested in working with people who seek unconventional treatment (like one of their products) that has been denied by insurance carriers.  To some people, Michael Moore is a total crackpot.  When it comes to health insurance, you should watch his movie, Sicko.  His illustration of the health industry in the United States is spot on.

I’m not waiting for my kidneys to be destroyed.  I’m not waiting to go blind.  I’m not waiting to have seizures.  Nobody at the insurance company is going to cave in and give me the medical treatment I need.  I’ll have to fight for it.

Bring it on.  I’m ready.

Just When I Thought Things Were Better …

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… my rash re-appeared last week.  Head to toe.  Most of my face, the palms of my hands and the soles of my feet are spared.  For now.  It looks like a sunburn, but it’s SCLE.  And it’s very, very photosensitive.  It feels like a sunburn.  It’s painful, too.   Like pins and needles.

In general, it feels like having a bad sunburn and laying on a bed of nails.

The doctor told me that the ONLY treatment that will work is the immunoglobulin infusions.  However, my health insurance carrier and the Federal Drug Administration have ruled that IVIG treatment for subacute cutaneous lupus is considered “experimental” and won’t authorize it.  If I had kidney failure, or seizures, or pleurisy or pericarditis, maybe some other treatment would work.

The doctor also told me that plasma exchange isn’t a viable option.  I’ve run the course of every pharmaceutical treatment available for lupus, with only temporary success.  Did you know what word is used for patients who fail medications?  They’re called nonresponders.  Yep.  That’s me.  A nonresponder.  Unless the insurance carrier will appeal their decision, I’m basically out of luck.  There are no other treatment options available.

Last year I had this rash for 7 months.  It was awful.  Last year I had IVIG treatment and the rash went away.  It went away for three months.  Just three months.  I have absolutely no idea how long this rash will last and what it may or may not do.  They say it’s just affecting my skin.  Just my skin.  As if that’s not a big deal.

I’m trying to sort this out in my head.  I’ve been fighting with lupus for over 16 years and never thought I’d run out of treatment options but for now, I guess I have.  I should be grateful this isn’t a fatal condition … it’s just painful and disfiguring.  I don’t want to go out in public.  I have an insane headache.  I miss my son and wish he could come home for a while, even though I know he can’t do anything about this.   I’m angry and afraid.  At some point I know I will pick myself up and dust myself off and get on with living  my life the best way I can.  What other choice do I have?

For now, I’m staying inside.

Pick Your Poison

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This evening I filled my pill containers with a week’s worth of medication I take for lupus.  I’ve been doing this every week of every year for about ten years.  That’s a lot of pills.  And I’m not counting the topical creams and other potions.

If you have lupus you will take medication.  It’s a given.  Our immune system is basically full of crazy T-cells on a mission to destroy the connective tissue of the entire body.  We don’t want that to happen now, do we?  We’d like our body to play nice with itself and be like, normal.  Right?  Since there’s no cure for lupus, the next best thing we can do is try to manage the disease.  We take medication, modify our lifestyle, get plenty of rest and hope this stupid disease stays in the background of our lives under lock and key, at least for a while.  I wish things were that simple.

I take a lot of medicine.  This year, the medicine isn’t working very well.  And that makes me mad.  I wish I could just stop all of it and see what happens.  If nothing else, I’d be able to save some serious cash.  But I’m not brave enough to turn into Holistic Alternative Medicine Organic Girl.  I’m more like Middle Class Traditional Suburban Girl.  For those of us that have autoimmune disorders, medicine is on the short list of viable treatment options.  There’s no cure.

All the medication I take is toxic stuff.  It’s poison, really.  Prednisone (aka The Best Evil Bad Drug) can eat bones, cause hypertension, damage the heart and make people psychotic.  Plaquenil can damage the retina and cause vertigo.  Imuran can cause lymphoid tumors and mess up the liver.  It reduces white cells and red cells.  I also take Dapsone, which is primarily used for people with leprosy.  LEPROSY!  I’ve been on methotrexate, an oral chemotherapy.  It made me sick every weekend for four years, but I learned to deal with it.  I’ve been on CellCept, which caused nausea and dizziness but I learned to deal with that too, even though it made my ears constantly ring for two years.

Like I said, it makes me mad.  However, there are a couple treatment options still out there and thank God I have a good doctor to prescribe them and good insurance to pay for it.

Last week I underwent the first in a series of infusions called IVIG … short for intravenous immunoglobulin.  Immunoglobulin reduces the proliferation of autoimmune cells.  Basically, it’s a plasma product formed by taking normal antibodies from up to 20,000 donors and mixing them together.  It is then sent to a processing center for mixing and filtration to remove viruses.  Then, it is freeze-dried and ready to be shipped.  In my case, I went to a hospital infusion center and spent about 7 hours in a reclining  chair while the machine pumped this stuff into me through a vein in my arm.  The infusion process was not painful.  I had no allergic reactions to it.  I was very tired for about 24 hours afterwards, but able to work the following day.  I sure hope this works.

Yesterday, I noticed my hair is falling out.  A lot.  It’s not coming out in big clumps, like with chemotherapy.  It’s just falling out whenever I brush it or run my fingers through it.  Will it get worse?  Will it just stop?

So for 10 points and the game …which drug is causing this?

Pick your poison, Sue.  It could be any of the toxic meds. But it’s probably the Imuran.

Crap.