Monday, March 21, 2011

Ready, Set....uh oh!

Well, here I am in my super new swanky infusion site.  I have the best infusion nurse in the world who treats me as her own (bc she is my CRNA mom) a board certified surgeon on site to tend to my emergency needs (which I haven't had any), a comfy couch to relax on while I watch my children play Geo Trax and build Lego houses and spaceships....unfortunately....we have no drug!  My dad prescribed and ordered it last Tuesday and it was to be shipped to his office by Friday.  When we arrived in last night my dad ran up to pick up the Alpha Lipoic Acid from his office, but it was not there.  sniff, sniff

We have called the company and they are overnighting some tonight, but sadly I am missing two days of infusions.  That is ok, because I am going to take this opportunity to explain how I was driven to go down this road since some of you have asked....

As I have said before, I was diagnosed at 21(I am 34 now) and immediately started on what was considered the "gold" standard of treatment at that time:  plaquenil, voltaren, alzulfidine, prednisone and methotrexate.  I was diagnosed fairly quickly because these "lupus" type diseases run in my family.  My sister had already been diagnosed with dermatomyositis, and my paternal aunt with polymyositis. With this information, the team at Emory decided it was the best treatment.  I felt better and actually continued on this treatment for many years (except I stopped the voltaren because I think it made me feel a little crazy, however it was hard to tell which of those was doing that...probably the prednisone, but again, who knows).  As we moved, I moved my treatment to "BIG" treatment centers.  The next place I was treated was Duke University.  I mention my treatment centers, just because I believed that the most current treatment and latest breaking disease news would be available to me and I followed their suggestions to a T.

I continued down this road for many years....THEN...I had a baby!  This seemed to change EVERYTHING for me healthwise.  I was always fine during my pregnancies, but it was very hard for me to recover postpartum.  Nursing was something I wanted to provide for my babies, but if I nursed them...I couldn't start any other treatment plan for myself....I could be on prednisone, and prednisone alone.  My next rheumy suggested the new biologics.  Now, I was a drug rep for Merck for years and have a great respect for the pharmaceutical agents we have available.  The science and technology behind them is quite amazing!  I was ON BOARD for the biologic adventure.

The first agents I tried were Enbrel and Humira.  I gave each 6 months to work and neither worked for me. Moved to Remicade.  Remicade was the drug that I say "changed my life'...I never felt better and was a new person....that was the first time I took it.  I took it for 1 year before deciding to have another baby.  After, my second was RA worsened again.  My new rheumy (can you tell I have moved alot) didn't want me to start back on Remicade because of the risk of an allergic reaction.  So I decided on Orencia.  It worked ok, but I eventually had to have my foot operated on to scrape out the inflammation around my ankle and repair torn tendons.  My doc then agreed that maybe Orencia wasn't providing enough control....then came Actemra!  Didn't work....I finally had had it and returned my conversation to sweet, dear Remicade that worked so well.  I was SOOOOO excited,  my first infusion was a breeze and I actually felt a little better, got to my second infusion and BOOM...anaphylaxis!  They had premedicated me to prevent this, they stopped the drip, tried to let me recover...but once they restarted it...they decided it was too dangerous and I couldn't get it.  Not breathing=NOT FUN!  I was heart broken.  Then I arrived at Rituxan....You know the rest.

After reading about ALA/LDN and patient experiences, I figured I had to try it.  You know the definition of insanity, don't you....trying the same thing over and over and expecting different results.  That is what I was doing.  The big Pharma drugs are great, but the only problem is that our bodies are too smart for them.  We block one pathway of inflammation and our diseases get better, but eventually they find another pathway to use.  On top of that, our immune systems are suppressed and we can't fight anything.  The ALA/LDN promotes a healthy immune system that upregulates and actually helps us FIGHT the matter the pathway it chooses.  I may or may not have a response to this treatment but it TOTALLY make sense.  I want to FIGHT this...make my immune system as strong as possible!  No one can say that I haven't given the other route a fair shot! I am!

I don't think that I will see the true power of my ALA/LDN treatment until I am off my immunosuppressants.  The Cellcept and Prednisone are suppressing, while the ALA/LDN is upregulating so they are working against each other right now.  I have stopped the Cellcept, but I can't simply stop my prednisone.  I have to come off it slowly.  I am having the experience in the mornings when I take my prednisone where I actually feel worse after I take it.  When I get up, I am obviously stiff, but about 30min to an hour after I take my prednisone my knuckles throb like they never have before, and I have a general sense of feeling worse.  This does pass, but I think what i am experiencing is the two agents (prednisone/ALA) battling each other. 

Hopefully I can write tomorrow about getting a infusion!

1 comment:

  1. With your writing skills and experiences you may have a book here. So sorry for the delay and hopefully you'll get started again and have excellent results. Your Mom and Dad are the best helpers you could have as I don't have to tell you.