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I am so excited I just got off the phone with my daughter's insurance company and they have approved for her to have the IVIG treatments. Hopefully things will be looking up for her!
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Yippee - approval
- By patp
- Posted October 28, 2009 at 6:07 pm · 11 replies
- In Treatment decisions
- Shared with the public
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- By PurpleSnowflake
- Posted October 28, 2009 at 7:15 pm
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That is great news:) Dr. Parambil changed my prescription this week to every 3 weeks instead of every 4 as he thinks the more often I take it the better I will feel. Please keep me updated, God bless and take care:)
- By Luther1216
- Posted October 30, 2009 at 6:12 pm
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Hi - Good for you - how long did it take?
That 's just what Im waiting for now to get approval.
My treatment will be for my Neoursarcoidosis -
Warm regards,
Luther Foy
- By patp
- Posted October 31, 2009 at 3:49 am
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Dr. Parambil wrote a letter to the insurance company and it only took about 6 days.
I hope you get your approval quickly because I know how tough it is to wait.
Good luck
Pat
- By Luther1216
- Posted November 14, 2009 at 3:42 am
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Hi - I have been approved and will go to the Wednesday
for my first treatment. Have you had your first treatment?
If you have how was it?
Take care and God Bless
- By patp
- Posted November 16, 2009 at 3:09 pm
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My daughter had her first treatment two weeks ago and is having her second treatment today. Her first treatment took a little over 10 hours and today it will take 5. She will then have to have treatments every 4 weeks. The first night she had extreme nausea and headache and then she felt like she had the flu for a few days. She also went down on her steroids at the same time so she is not quite sure what was what. We are anxious to start seeing results but it says it may take a little while. I am so glad your was approve and you can start making a positive step forward! Where are your doctors located?
- By patp
- Posted November 16, 2009 at 10:11 pm
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I wanted to update my daughter had her second infusion today and didn't suffer any side effects at all. No headache which was great news for her.
- By idgitbaby
- Posted November 16, 2009 at 10:48 pm
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I am wondering if this treatment is as good as it sounds? It seems that it helps everyone who used it better than anything else they have tried. So why don't they use this for all sarc?
- By Luther1216
- Posted November 17, 2009 at 2:14 am
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Hi - thanks for the update - I will get my first treatment on Wednesday 11/18 - I will stay in the hospital for 3-5 days
to monitor. I live in NJ and my Dr is located in NJ UMD
I hope things work out for you.
Take care and God Bless
- By patp
- Posted November 17, 2009 at 7:08 pm
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I am curious why are you staying in the hospital and being monitored? My daughter did it as an outpatient for one day?
- By Luther1216
- Posted November 17, 2009 at 10:29 pm
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The Dr wants to monitor my bodies response to the treatment the first time. BTW my sarcoid has effected my heart and lung and now neuro. I, also have ICD implant for my heart. Do you have neurosacoid?
Take care god bless
- By patp
- Posted November 18, 2009 at 1:11 am
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I am writing this for my daughter as she has sarcoid. Her active sarcoid is in her nose. She doesn't have much septum left. She tested positive for small fiber neuropathy and is the reason she has such extreme pain in her face and why Dr. Parambil prescribed the IVIG. She does have tachychardia but it is controlled with heart medication. She is fortunate she doesn't have any damage to her heart and lungs.
I wish you the very best with your treatment. I will keep you in my thoughts.
Help and information from FSR
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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