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.

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5 responses »

  1. Oh, you sweet poor thing…

    32 years ago I was (finally) diagnosed with Duhring’s Disease, a skin disease that causes sores and intense itching and burning on major parts of the body. I was covered with superating sores on my hands, neck, face, and scalp with them. I hated going out in public because it was so disfiguring. Hairdressers were out of the question.
    My medication didn’t respond so I was put on huge doses of prednisone to help with the pain.

    Many years later I was in remission and discovered that I now have ostoepenia thank to the cortisone treatments which, really, did very little to help my symptoms.

    You have all my sympathy and I pray that relief is near for you. I am willing to chip in for the cost of treatment for you since your insurance is unwilling to help you.. Perhaps others who read this would also be willing?

    Thanks sooo much for your kind words! I think you truly understand my situation! Unfortunately, the treatments are costly … $15,000.00 per infusion, one infusion every three weeks … a small fortune that would be crazy to try to finance. But I do appreciate your good wishes and hope your osteopenia is under control. Like you, I’ve been on prednisone and know all the risks and side effects.

  2. I’ve never gone through anything as bad as that, Sue; so I have no words that will comfort you the way you should be. All I can do is send you love, positive energy, and a great big hug.

    { { { { HUG } } } }

  3. I’m sorry to hear you are going through this. Damn the people in charge of what is or isn’t acceptable treatment that insurance will pay for!!!!

  4. I’ve read this post and had to come back because I didn’t know what to say. Lupus is such a strange disease. I know it can be aggravated by stress though. I wonder if there are any natural treatments? I need to talk to my sister again and see if she can suggest anything. In the meantime, you are always in my thoughts and prayers. That Trisha is a sweetie, isn’t she?

    Thank you, Teeni. You are such a kind soul 🙂 I just posted something new, so things are a little better. Thanks for your prayers!

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