Peggy

IvG Infusion

5 posts in this topic

I had my quarterly appt with my rheumatologist doctor and had the cardiac test to see if the tissue is hardening; and then I also did the lung tests and should get the results this afternoon to see how it looks compared to what it looked like 6 months ago. I'm on Cellcept and she now is going to have me have IvG Infusion where they infuse me for 3 days a month for 3 separate months. Has anyone else had this and know what this is? I didn't ask enough questions so I have a call into her assistant this morning to find out more. Thanks.

 

Warm Hugs.

 

Peggy

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Peggy, I wish I had a answer for you. Maybe someone on here will know. I hope your test turn out okay. I think I know you from somewhere.

Take care,

Sadie

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Peggy,
I've been getting IVIg infusions for 2 years. The IVIg infusion solution is actually a blood product, not a drug. The IgG antibodies are extracted from the blood of thousands of blood donors. IgG are antibodies that help the immune system fight disease. These antibodies are found throughout the body. When you are deficient in IgG antibodies, your body can't fight infection and inflammation effectively. I get these infusions primarily for my polymyositis, but I'm sure it helps to reduce inflammation due to scleroderma as well. It's the only treatment that has been found to reduce muscle inflammation and keep my CPK or CK (muscle enzymes) in the normal range. My first infusions were once a month for 3 months. Now I get them every 6 weeks. Last year I had to stop the infusions for about 4 months and my CPK went from 60 to over 1000. I'm now back in the 60's (<200 is normal for CPK). A wonderful side effect of IVIg is a boost in energy about 48 hours after the third day. (Please use the link above to learn more.)

As far as the infusions themselves, once the nurse gets the IV in, the infusion takes about 6 hours each day. Be sure to take reading material and music to help pass the time. I usually work a little, read, listen to music and sleep.

Hope this helps. So did you get your tests results? Good news I hope.

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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Hi there!

I am in the middle of getting a series of IVIG infusions. So far so good. No side effects or problems and I do feel better. I have not had the miraculous remission that some have had but I do see some improvement in my joint pain, energy and a little skin improvement. The hardest part about the treatment is getting my insurance to cover it. It took almost a year for them to come back with an approval.

 

Good luck and let me know if you have any other questions about it.

 

HeatherT

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Heather,

So glad to hear the the infusions are working for you! It's another one of those treatments that works for some but not for others. Like you, I just hope the insurance keeps paying otherwise I'll have to find something else.

 

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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