HeatherT

Ivig - I Got Insurance Approval!

11 posts in this topic

Hi everyone,

I mostly visit this forum when I am feeling badly and need help. I am so happy to post some good news! I finally got approved to try IVIG and I start next week. I know it doesn't help a lot of people but I can only be hopeful. I have been waiting for about 8 months to get this approved and it didn't happen until my husband switched jobs and got a new provider.

 

Wish me luck! I will be sure to keep you posted.

 

Heather

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Heather,

Great news! We just love good news here. Please let us know how the treatments go and how you are feeling.

 

Thanks for keeping us posted.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

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International Scleroderma Network (ISN)

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Heather,

Congratulations! I really hope the IVIg infusions work for you. They sure work for me. :D Even though I get bored with the long infusions and it is disruptive to my week every 6 weeks, the energy and improvement in my overall quality of life is well worth it. It's the only treatment that has been able to lower my CPK to the normal range, so continued justification of them has been relatively easy.

 

Will they start you on a 5 day infusion? I take a good book, my ipod and some work. This gives me a variety of things to do.

 

Please let us know how it goes.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Goodness, sometimes I feel like I need a medical dictionary in order to understand what you guys talk about.

What is IVIg infusions? and what is CPK ?

Thanks,

ani

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Congraatulations, Heather!!! I wish you much success with the IVIG treatments.

 

I had the treatments at one time and they helped so much. We are now fighting with a new provider....so time consuming and stressful as you know.

 

All the best to you with them. Please be sure to let us know how they go.

 

xoxo emmie

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Ani,
I think we all are acquiring a new vocabulary. smile.gifIVIg (or intravenous immunoglobulins) is an infusion of antibodies that has been found to be helpful for some people with scleroderma and other connective tissue diseases. The antibodies are extracted from whole blood.

CPK is a measure of the muscle enzymes in your blood. You can have enzymes from skeletal, heart and brain muscles all of which have different CPK measurements. Because I have polyomyositis (a connective tissue disease that affects the skeletal muscles) and heart involvement, I get my CPK and CPK-MB check monthly.

Hope this helped.
Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Congratulations!! I had IVIG a few years ago and it helped me considerably. I had it once a month for six months. I think it was the best thing I did to combat this disease. It took me a few months to get the best effects, but I think it's because we went slowly with it. The only think I can tell you - and it only happened once - was the headache they will tell you about was really bad. My nurse told me it happens when the infusion goes in too fast! Be strong, be confident and embrace the good feelings!!! I am soooo very happy for you! Michele


Soft hugs your way,

 

Michele

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Thanks for all the words of encouragement!

 

I will start on Monday for five days straight. I think it normally takes 5-6 hours but the first day it will take longer because they administer it a bit more slowly to be able to monitor my reaction. I am only approved for 3 treatments and then will have to show that its working to get approved for more.

 

Has anyone any experience with how to prove that it is or isn't working. I'm sure they won't just accept my opinion..."but I feel so much better!"

 

Thanks,

Heather

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Heather,

Sounds like they are doing it right. It's so important to go slow. Like Michele the only real side effect was a headache the night after the last day. Sometimes I get tired on the first and/or second day, but that could be from having to sit so long. I have discovered that by standing during the last 15 minutes or so and doing some gentle stretching really helps.

 

I've been getting IVIg since March of 2006 about every 4 to 8 weeks, depending on bloodwork. The main justification for me has been the CPK. It always drops after a couple of treatments and then when we would stop the treatments, after 2 months, the CPK would climb again. I put it into a spreadsheet and the rheumatologist uses it for justification. (Yes, I am a nerd at times. :D ) Depending on your symptoms, your rheumatologist may use a specific bloodtest or two, skin score, or something else. Here's a study you might take a look at.

 

Intravenous immunoglobulins improve the function and ameliorate joint involvement in systemic sclerosis: a pilot study.

 

Good luck next week. I look forward to hearing about your experience and hearing some positive results.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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