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IVIG
Jun 25, 2009 22:25:40 GMT -5
Post by lindarn on Jun 25, 2009 22:25:40 GMT -5
IVIG is IntraVenous ImmunoGlobulin. It is NOT the same as AP or any drug like Cytoxan. IVIG is actually not even a drug; it is a blood plasma product taken from a pool of thousands of people who donate blood. It is all tested. It has FDA approval for immunodeficiency diseases (there are many), MS, myositis, and other autoimmune diseases. I do know it is being used some for SD, but not sure how easy it is to get insurance coverage for it.
Hope this answers some of your questions Kate.
Linda
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kate
New Member
Posts: 21
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IVIG
Jun 26, 2009 7:23:29 GMT -5
Post by kate on Jun 26, 2009 7:23:29 GMT -5
Thank you lindarn, that's what I was wondering.
Kate
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Peggy
New Member
Posts: 33
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IVIG
Jun 28, 2009 11:24:03 GMT -5
Post by Peggy on Jun 28, 2009 11:24:03 GMT -5
I was denied coverage for the IVIG with just the Scleroderma diagnosis. It wasn't until I was diagnosed with Polymyosits that BCBS covered it. I haven't been doing these now since last year as I wasn't getting any physical results meaning my muscle pain was still as bad. What it did do though is bring my CPK muscle numbers down which meant less muscles being damaged. I have peripheral neuropathy which has damaged my muscles permanently up to my knees. With my CPK numbers down to normal this then stops that from progressing.
Now that I've been on the methotrexate since the middle of May my muscle pain has diminished some which is a welcome relief. I have side effects from that but they are manageable and worth what it's doing for me.
I would have loved to have the IVIG done right in my home. The ones that have this system are very lucky. I hated going in and laying in the hospital for 3 days. They got to be very long days.
Warm hugs, Peggy
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IVIG
Jun 28, 2009 20:46:19 GMT -5
Post by Cubby on Jun 28, 2009 20:46:19 GMT -5
PEGGY: Have u tried NEURONTIN for the neuropathy? I had to take really high doses but it did the trick along with ULTRACET.
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Peggy
New Member
Posts: 33
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IVIG
Jun 29, 2009 17:01:11 GMT -5
Post by Peggy on Jun 29, 2009 17:01:11 GMT -5
Yes, I've done both the neurotin and lyrica and neither helped much. It did go away for a while and just the last 3 months or so has come back. It may be something that I need to go back on again and may need to see the neurologist again.
Warm hugs, Peggy
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IVIG
Jun 29, 2009 19:08:54 GMT -5
Post by Cubby on Jun 29, 2009 19:08:54 GMT -5
PEGGY: I think I would give it a try again, you will know pretty fast whether it works or not.
Lyrica did not work for me. However, the Neurontin did, but I went up to 3,500 mg a day. (I was treating with a pain management doc for that--would never have taken that much on my own.).
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