First Home IVIG update

[Carolina]

Dear Sjogren's Angels,

As you may remember I have Primary Immune Deficiency Disorder (IgG and IgM).

I had my first home IVIG today, and it was marvelous.  Two nurses came (one in training) and they were both delightful and extremely competent.

The entire process took about 4 hours, but I think future treatments may be faster since this was the 'set up' phase.

Now that I'm 'in the system' I will have the materials delivered on Thursday (late afternoon) and then the nurse will come on Friday morning, at 9 am.

So much easier than driving over an hour to the huge Duke Infusion Center, walking to the elevator and to the Clinic (with my walker) and then having my infusion in the very large center (at least 50 stations with patients being treated).  Duke does an excellent job, I'm not saying that.  But with so much going on, infusion pumps buzzing and beeping, it is tiring.  And then I have to walk back, elevator down and wait for my husband.

I'm so happy to be in this program!

Regards, Elaine

[heidiaj]

Hello, Elaine!  I am so happy to hear this news of yours!  I could almost hear the contented sigh that you were emitting!  I used to see my rheumatologist in a large hospital environment, and it exhausted me.  I drove an hour and a half to get there, then had to get from my car to her office in the hospital, see her, and then God forbid she wanted to send me to the lab in another part of the hospital.  (She retired and now I have a new doc right in my town!) I spent a lot of my professional life working to improve options available for employees.  Mainly, I fought for them to be treated with dignity & respect.  What you've described that is now available to you at home is a lovely example of allowing "patients" to have access to services in a dignified, comfortable environment.  I salute the people who have worked along the way to make such access available to wonderful folk like you.  Despite your own struggling, you always have a kind word and support for others.  I recently was lamenting a situation of mine on here, and you gave me lots of ideas to try to help.  Let me be the first to say that it warms my heart that this medical option is available to you in the comfort of your home.   Wishing you wonderful serenity!

[cccourt1942]

I recall you said this costs 14,000.00 per month.  Is it more coming to your home

[Carolina]

Actually, ccc, I think it will be cheaper.

The roughly $14,000 every four weeks is just for the IgG, then there was the services provided by the Infusion Center, which were another $4,000 every four weeks.

I know that both the IgG from the speciality pharmacy that sends it to me, and contracts with a nurse to administer the IVIG and to stay with me will be considerably less..

You know how much just a Tylenol costs in a hospital setting.

The reason Medicare is carrying out this demonstration project is to determine if home IVIG is safe enough to warrant the cost savings. 

Just keeping me out of a large hospital and away from all the possible infections, and out of my car on major highways (that's the MOST dangerous thing we do: in our cars) adds so much to my safety.

I'm so happy that I've been included in the Demonstration Project.

Regards, Elaine

[cccourt1942]

18,000.00 per month?   That's 216,000.00 per year?

[anita]

Insurance always prefers to do IVIG at home...costs less.  Infusion centers charge much more then a home nurse...as an infusion center must have a doctor present.  My insurance company (years ago) demanded it and only allowed in office infusions every 3-6 months for doctor to review and make changes (if necessary) to treatment protocol.  Sadly, I live in rural area and no nurses available for my long infusion.  They keep saying they hope to bring on more nurses so they can take on contracts like mine, but it hasn't happened yet.

So glad you are able to do this at home...it really is helpful and easier on the body with no travel...especially afterward.

[Carolina]

Yes, ccc, at least $200,000+ per year for my IVIG.   

You can imagine my horror after diagnosis with CVID, at contemplating IVIG when I knew the extraordinary cost  (how would I pay, am I 'worth it"?) and what about the possible complications of the infusions (immune flares, aseptic meningitis).

1.  IVIG is covered under part B Medicare, My supplement pays my balance.  I pay nothing. (It still bothers me, that cost, however))

2.  The IVIG keeps me virtually infection free.  So it is worth it, since I was always sick before IVIG.

3.  Infusions are not a problem, but my Immune System goes into a flare state 48 hours AFTER IVIG, so I take Medrol (methylprednisolone) regularly, 2 mg every other day.  That prevents the flare.

4.  I was not identified and then completely diagnosed (it took two years, because I kept refusing to believe the diagnosis) until 2013, when I was already 71. 

My deficient Immune system is the source of all the attacks on my body/systems.  With IVIG My Immune System no longer fails to protect me from infection, but it uses cytokines (not autoantibodies) to damage my body.  That's why I can no longer walk, for example.

Ain't we got fun?

Regards, Elaine