About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

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Please Pray To The Insurance Gods For Me Tonight!

Please Pray To The Insurance Gods For Me Tonight!

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Oh my lord.  Visited my Rheumatologist today and the hair loss is a bad sign.  I am feeling so much stronger but the hair loss, in addition to the fact that my rash and muscle weakness returns the week before I am due for my IVIG infusions, means that my medication is not working.  I am not going into remission and the Prednisone was just masking the symptoms.  Crap!  I thought that I was doing so much better.  Not a really big problem, it just means that they have to pull out the big guns now and I need to start Rituxan infusions in addition to the IVIG infusions.  I am fine with trying some new infusions and I am even ok with the additional time sitting at the hospital hooked up to IV’s but when she dropped the price of these infusions I almost passed out.  Apparently I will need 4 or 5 treatments in the first couple of months, followed by a treatment every six months for the rest of my life and the cost is, drum roll please, $10,000.00 for each treatment.  Please be covered by OHIP, Please be covered by OHIP!!!!…. NOPE!!!!  So after the initial who knows how many thousands of dollars for the first two months, I am looking at $20,000.00 a year in treatments for the rest of my life.  AGHHHHHH!!!!!  I am hoping, praying and most likely begging that the majority of this will be covered by my medical insurance through work.  Thank goodness that Danny and I both have coverage.  I just have to wait now and see how much of it they will cover and for how long.  So I am asking everyone I know to please pray to the insurance gods for me tonight and keep your fingers crossed that this is going to be covered.  If not…..  Well I am really not sure what will happen if it isn’t but best not to go there until it happens.  No point worrying needlessly since it may very well be covered.  Ok, that’s a load of hooey as I am very worried!!!!  I really hope that the insurance gets back to me quickly and lets me know so I can breath a little easier.  Who in the world can afford $20,000.00 a year in medication?  What is wrong with the drug companies who set prices this high?  I actually know people on the support group I am on who could not get coverage for this drug and have died as a result.  Just three months ago one woman passed away from heart failure while fighting to be approved for coverage.  She was only in her forties.  It was so sad.  I know that will not be my fate as Danny and I  would work three jobs in order to pay for my medication but I am really hoping that we won’t have to.  So fingers crossed everyone and please send a prayer out there for my family tonight and throw some prayers out there for everyone sick without any coverage as they are all in a way worse spot than I am in.  This has been such an eye opener for me. No bright side or positive life posts tonight.  Off to distract myself with a bath and a book.  I already ate myself into a frenzy when I broke into my best friends cupboard and ate all of her Crunch a Munch while checking in on her cat while she is on vacation.  Sorry but it had to be done!  I owe you a new box, unless I don’t get coverage, then the box is on you.  LOL   XOX

2 Comments

  1. Deborah Young

    24th Mar 2017 - 3:17 pm

    I am sorry to hear this news Theresa. I am also getting Rituxan infusions, two infusions over two weeks every six months. They are 27,000 each here in the USA (our drugs are much more expensive here). My insurance pays 80% of the cost. I certainly understand freaking out about the costs as I am also having meltdowns about costs right now. IVIG therapy in the USA is 100,000 per infusion so I have never had that done. I was hoping to try IVIG this year but I guess I won’t be doing that. My insurance changed dramatically in 2017 so I’m hoping that I can find better coverage in 2018 and have my husband include me on his work insurance as well. I will pray for you for your therapy to be covered and you will start feeling much better (and grow HAIR again!) I think the Rituxan was of benefit to me but it was slow going. I have had 2 sets of therapy and the next two are this May. I am 61 so I think it becomes more difficult as we age. Sometimes the drug manufacturer will assist in helping with the costs. I received a credit card from the manufacturer for my first infusion that covered up to 4,500 of treatment cost. You may want to contact the company to see if that would be possible for you too. Can’t hurt to ask 🙂 Anyway, I wish you well, hope this works and makes you super strong and healthy. I appreciate your blogs, they have brightened many days for me.

    • Theresa Bertuzzi

      12th May 2017 - 9:05 am

      It is so hard. Your message made me feel so much better to know I’m not alone in this. That sucks about the IVIG treatments. Those are covered here in Canada. So frustrating! XOX

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About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

Stay Connected

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