Stopping Steroids … Finally

For the past 10 years or so, I’ve been on prednisone.  Most people that have autoimmune disease wind up taking steroids.  The lucky ones can be on them for short periods of time.  The not-so-lucky … like me … require high doses for long periods of time to keep their immune system in check.  Sometimes, I’ve been on 80 mg a day for months and months, and months.  Ick.  My hair gets brittle, my skin thins out like tissue paper, I develop bruises everywhere, and worst of all, I get a little crazy.  Can’t sleep.  As a bonus, I get this voracious desire to eat anything that isn’t tied down or locked up.  But the best is the paranoia that is known to set in with high doses. You could call me a little nutty because occasionally, I am certifiable.

I’ve finally … FINALLY … taped completely off these evil little pills.  At this point in my disease, other medications, most likely the IVIG infusions I get every three weeks, are taking the lead and keeping most flare ups at bay.

Stopping steroids isn’t easy.  If you taper too quickly  (as I have done more than once), you can easily find yourself dealing with adrenal insufficiency.  Basically, it feels like you’re having a heart attack and are about to die.  If you stop completely (which I have not attempted) you can go into adrenal crisis, which can be life threatening.  My taper regimen took about three months, once I got the go-ahead from my rheumatologist.

Long term use of steroids can cause all sorts of damage.  It can cause permanent bone loss, high blood sugar, high blood pressure, thinning of the skin, and what is nonscientifically referred to as a ‘camel hump’ of a fat deposit on the back of the neck. It also likes to settle in the abdomen for a permanent little pad of tummy fat.  There are no exercises in the world that will get rid of them.

I know deep down in my steroid-damaged bones, that someday there will be a cure for this crummy disease.

In the meantime, I’m off steroids and I’m doing my happy dance!

World Lupus Day

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

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.

Lupus Warrior

I’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.

The 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.

The January Funk

Last weekend I tossed a few things in a suitcase and drove the 93 mile trek to spend the weekend with my sister.

I could feel a January Funk coming on and wanted to shake it off.   My choices were to just give in and let it happen or DO SOMETHING before I morph into the Funk.  We went to the movies, and watched a few more at home.  I caught up on some sleep.  We went to church and drove around town a bit, ate in and ate out.  I came back home on Sunday to do laundry and get ready for a busy work week.  All in all, it was a very relaxing weekend.

Somehow, the Funk came anyway.

When I’m not feeling well mentally or physically, it’s hard to determine  whether my problems are  Lupus-related or something else.  Maybe it’s my medicine causing goofy side effects.  Or not.   I’ve had a cold for the past 2 weeks and my immune system is not strong.  I also have central nervous system involvement with Lupus that sometimes messes with cognitive skills … like feeling totally clueless at times, having trouble concentrating, depression, aphasia, etc.  Most people have these issues from time to time too, so I never know if it’s me or Lupus.

January is cold and dreary.  Heating bills are extra extra high in January.  Spring seems a lifetime away in January.  I’m homesick for my son in January.  Plus, my hair is growing back and looks like I dropped acid and decided to cut it.  My parents had birthdays in January and I miss them even more during that time.  To top things off, the immunoglobulin infusion that was supposed to start in November is still in limbo with the insurance company and my doctor trying to reverse the denial.  I really don’t want to go through a plasma exchange (which IS covered by insurance), but that would be the next step.  I’ve had that whole scenario in the back of my mind for months and feel like a ticking time bomb, waiting for my crazed and confused immune system to go into another lupus flare-up.

Time will pass and things will get better … it usually does.  But for now, today, I feel the Funk.

Pick Your Poison

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.

Hospital Antics

Is it too much to ask for a little diversion when undergoing a 6-hour infusion in the hospital?

Next Thursday I’ll have my first IVIG infusion.  Need get to the oncology/hematology department at the butt crack of dawn.   Hospital instructions included  a veritable cornucopia of random advice: bring a blanket/or jacket in case I get chilled; bring my own lunch and they’ll store it in their fridge; bring headphones if I want to watch the bedside TV; drink a lot of water before arriving so they can easily find a big fat vein to stick; wear socks.

The last thing I want to do is go to the hospital.  Under any circumstance.   Hospitals are full of doctors, nurses and patients.  Everybody washes their hands, right?.  Right.  The sick people infect the visitors.  The visitors subsequently get sick and wind up in the hospital.  It’s a vicious cycle.  In addition, my immune system is filled with deranged T-cells that can’t tell an antibody from an antigen.

Unfortunately for me, I can’t avoid the hospital this time.  I have lost pharmaceutical control over my immune system … translation … lots of money and time for lupus medication that did not work.   So I’m stuck, pardon the pun.  Ever the optimist that we can make lemons out of lemonade (pardon the slip), I decided to make a fun list of things to do while a needle is stuck in my arm for six hours.  In no particular order, here they are.

1.     Take cell phone pictures of the arm in question.  Send them to friends.  Or not.

2.     Zone out in the Happy Place part of the brain that copes with stress. Take drugs if that doesn’t help.

3.     Write blog entries

4.     Organize and moderate a patient panel to discuss healthcare reform.  Will keep you updated.  Or maybe take over the hospital.  “Death to the insurance carriers!!”

5.     Working with my jewelry kit, design and make bracelets.

6.     Call for pizza delivery because a cold boring sandwich is just a cold boring sandwich.

7.     Hire a stripper.  Or convince someone to do it for free.

8.     Learn to juggle with one hand.  Just don’t anybody sit too close or you’ll get bonked on the head.

9.     Read a book about coping with Lupus. Oops! I already threw it out the window last night.

As you can see, this list isn’t very long.  And yes, this list isn’t very good, either.  So send in your suggestions!  Drop me a line!