Friday, March 7, 2014

Hives, AGAIN!

My allergist called and said they wanted to see me about my blood results.  That always makes me nervous... but luckily they got me in that day so I didn't have too much time to make myself worry.

My blood results:
  • Autoimmune disease: negative (great!)
  • Total IgE 262.6 (normal is less than 165.3 IU/mL)
  • total IgE Receptor AB 6.2% (normal 0-5%)
What does this mean?  Well, not much.  People with severe asthma/allergies, like myself, could always have an elevated IgE count.  Since I don't have a baseline, we are not sure if this is a high number for me.  But it does show that my body is up to something (duh!)

She also told me that 99% of the time the never find out the cause of chronic hives (chronic idiopathic urticaria).  NINETY NINE PERCENT!!!  That's so frustrating.  But she said that most people they are able to get the reaction to calm down/stop with the usual medications.  Unfortunately right now I'm taking everything she can give me - full blast - and I still broke out in hives.  This photo was taken today - while on Prednisone!!!  That angry red, itchy rash is all over my arms/chest/neck today.  The hives seem to break out in different areas each time.  The hives on my eyes are the worst, though the back of my neck and my armpits are not too comfortable either.  In fact, there's really no good place to have hives.

I have to do something about this.  These hives are taking over my life.  I have to take so much anti-itch medication just to be comfortable.  But that medication is also given to people as a tranquilizer - so ya, it doesn't make me the best mom in the world.  Scarlett has come in my room the past few mornings and pulled off my covers "Mom, it's morning-time.  The babies are crying.  You need to get your jammies on and feed the babies."  And the Prednisone makes me depressed.  The other day I was helping her with a craft and she looked at me and said "Mom, can you be happy?  Can you smile?"  Something has. to. change.

So how?... well, here's a list of everything they have to treat this:
Oral antihistamines
  • Second-generation, newer antihistamines.
    • Fexofenadine (Allegra) - taking at double dose
    • Loratadine (Claritin, Alavert) - tried
    • Cetirizine (Zyrtec) - tried 
  • First-generation, older antihistamines.  These antihistamines can make you drowsy and impair your ability to drive or perform other tasks that require physical coordination.
    • Hydroxyzine (Vistaril) - taking
    • Diphenhydramine (Benadryl) - tried
Other medications If antihistamines alone don't relieve your symptoms, other possible treatments include:
  • H-2 antagonists. These medications, such as cimetidine (Tagamet), ranitidine (Zantac), nizatidine (Axid) and famotidine (Pepcid AC), can be used along with antihistamines. - taking
  • Oral corticosteroids. Oral corticosteroids, such as prednisone, can help lessen swelling, redness and itching — but are usually used only a short term for severe hives or angioedema because they can cause serious side effects. Corticosteroids can weaken your immune system, making it easier for you to get an infection or worsening an existing infection you already have. - taking
Other medications are still being studied to determine whether they may be useful for treating chronic hives. These include:
  • Leukotriene modifiers. Montelukast (Singulair) and zafirlukast (Accolate) are asthma medications that may be helpful when used along with antihistamines. Side effects of these drugs may include behavior and mood changes. - taking
  • Cyclosporine. This immune system suppressant can help with symptoms, but it can cause serious side effects and needs to be monitored carefully. The Food and Drug Administration warns that taking cyclosporine (Gengraf, Neoral, others) puts you at greater risk of opportunistic infections, such as the activation of a previous infection. - a possible option
  • Omalizumab (Xolair). This medication is normally given by injection to treat allergic asthma. It may help people who have chronic hives caused by an autoimmune response that haven't been helped by antihistamines. Only very small studies have been completed, so more clinical trials are needed - a possible option
So at this point there are only a few options:
  1. Wait.  Pray that my body will somehow magically stop freaking out.  I am hopeful that as my body  continues to adjust to no longer breastfeeding it will somehow reset.  The Allergist told me that there is no evidence to support that idea, but she is crossing her fingers with me.
  2. Take Cyclosporine.  It basically turns off your immune system.  Takes about 6 weeks to shut it down.  The hives will go away but you no longer have an immune system.  Scary.  You have to be monitored really closely (especially the kidney function).
  3. Take Xolair.  The shots are given every 3 weeks or so.  Usually after 3 shots you'll be able to see if it's helping.  Probably my best option right now.  Except that they shots are ~$1500 EACH.  And my insurance probably won't cover them (still waiting to hear back from them).
I have to do something.  It's been 6 long months of itchy hell.  It's time I get my body back.  The only question is how....?????

4 comments:

LL said...

Oh my GOODNESS I am SO SAD for you!!! This SUCKS! Maybe we need to have a family fast that you will get better and stay better. :-(

Praying for you - keep hanging in there! And beat yourself up about being a bad mom - YOU'RE NOT! You're wonderful!! Over the years I've found that when you do what you can, it is enough.

Love you!!

More Bacon said...

UGH! I have nothing helpful to suggest. I'll keep you in my prayers and on the prayer roll out here.

Sure love you. So sorry this is sucking so badly. You're doing so well!

VickieG said...

Already had your name in the Draper Temple; we are doing a sealing session tomorrow and will put your name in again. What a horrible thing for a busy Mom of 3 children with twins to go through. You are totally amazing for what you get done in spite of it. Great birthday party. Hopefully SM will put these in the Christmas video. Darling!

Our family said...

We're fasting for you tomorrow. I wish I could fly out there and help!