hurry up and wait

Today I drew a line in the sand.

I have been hinting about going on Short Term Disability (STD) at work for a few weeks. My boss keeps asking for a date (no not that kind!) so today I gave one… next week.

I knew I was heading into a flare-up since last fall when my CPK started heading on an upward climb. I did not start to feel symptoms until January and have been on a downward spiral since. I have been having some aspiration of my saliva, fatigue, dysphonia and gradual but accelerated weakening of my muscles (particularly my arms.) Unlike my first and only experience with the disease in 2007, I am experiencing lots of muscle aches and frequent headaches. I have not been showing any signs of the rash across my fingers and face which made my disease easier to diagnose first time round.

Perhaps in naiveté, I thought having a flare-up would be more manageable and quicker to rebound from.

I know what drugs work and don’t work, I’d be quickly approved by my medical insurance and be able to rebound without any time off from work. How I under estimated the obstructionism of medical insurance companies…

After 2 months I have yet to get approval for treatment. I have been with the same medical insurance company since been diagnosed with DM. I have been with the same Rheumatologist and Primary Care physician all this time. You would think my insurance would be familiar with my case file. Prednisone did not stop the disease first time round. I did have good success with Rituxan, which I did before little was known about the drug treating DM/PM. My Rheumatologist suggested I try Acthar as my DM was difficult to treat in the past.

Our communication with my medical insurance company has gone so far:

  • Access to Acthar. DENIED – have I tried Prednisone?
  • This was appealed.
  • Expedite appeal, DENIED – no reason given, but it certainly is not urgent.
  • As a Plan B submitted to have Rituxan approved.
  • Access to Rituxan, ON HOLD – more info needed. I suppose it would be too much of an imposition for them to read that they approved it and successfully treated me with it in 2007.
  • Appeal of Acthar, DENIED – Acthar is only to be used to treat difficult cases of MS, infantile spasms and “other FDA approved indications when there is failure of corticotropin”. Acthar has been approved for DM for only 60 years.
  • Oh I need a referral from my Primary Care physician to actually see my Rheumatologist. I get all my meds and monthly blood-work done through him, so I don’t see why this is an issue now.

In the meantime I have been pre-approved for a 30 day’s supply of Acthar by NORD (www.raredisease.org). Can’t wait to get started!

Great news today! Mo wrote this blog entry yesterday and this afternoon we got word that he is approved for Rituxan! He will try the 30 days of Acthar while our insurance company reviews their policy. If denied by our insurance for Achtar treatment we will have Rituxan to fall back on (which worked wonders for him in 2007!!!). We are THRILLED that we can move forward!!!

 

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2 thoughts on “hurry up and wait

  1. Ralph and I (mother in-law and father-i-law) are so relieved that you were able to get approved for the Rituxin and can begin the new drug Achtar as well. Prayers are coming your way, Mo and Nicole, that you will once again be able to beat this disease!!! We love you very much and are here for you whenever you need us.

  2. Mo. Sorry you had to go through all of this nonsense with the insurance company. Howerver, I am delighted to hear that they finally did approve Rituxin which gives you a good Plan B option. My thoughts and best wishes go out to you.

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