Quote:
Originally Posted by Maria williams
Hello Doug,
I also have MMN, I was 65 years old (Female), when I was diagnosed. Now I'm 69 years old. The IVIG did not work for me. I got mennengitus 2x from that drug. This was back in 2010.
On Feb. 2011 my Neurologist put me on Hizentra, per infusions, done at home. 3 grams (15 ml) twice a day, twice a week. Over time that has increased to 4 grams, (20 ml ) twice a day, 4 times a week. The drug is expensive, but I do have Medicare and Humana supplement insurance, with a co-pay of $860.00 per month. However, I'm doing very well on this drug, so far.
Sincerely,
Maria W
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I would just like to point out that Hizentra is also immunoglobulin. It's just a subcutaneous version rather than IV. Here is information from the manufacturer:
Quote:
Hizentra is an immunoglobulin (Ig) replacement therapy that you infuse yourself, using a small needle and infusion pump. It is approved by the US Food and Drug Administration (FDA) for people with primary immunodeficiency disease (PI, also known as PIDD). Because Hizentra is ready to use at room temperature, you can infuse whether you’re at home or on the go.
Hizentra provides you with stable, steady-state Ig levels, whether infused weekly or biweekly (every 2 weeks). In addition, Hizentra:
--Delivers an Ig dose in half the volume of 10% solutions because it is a 20% concentration*
--Can be stored at room temperature for up to 30 months (up to 77°F [25°C])
--Maintains a consistent level of protection against infection5
--Provides proven protection and safety
--Hizentra should not be used if you have had serious negative reactions to immune globulin (Ig) preparations or a deficiency of an Ig known as immunoglobulin A (IgA). Because Hizentra contains the amino acid proline as stabilizer, patients with hyperprolinemia (too much proline in the blood) should not take Hizentra.
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Maria, do you find that it actually reverses some of the weakness or other MMN symptoms? I have never run across this blood product before, so I'm curious, as it's getting harder and harder to start an IV and I'm reluctant to get a port.
If you are new to MMN, be sure to do some Google searches for other online resources. This forum is very good but there isn't a lot of MMN activity.
11-29-2013, 07:51 PM
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