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mollie

IVIG Infusions

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Hello Everyone...I haven't posted for awhile. A few months ago (after 2 years of not wanting to go down that road), I started IVIG infusions. So far, other than a minor headache (even after doing all that I am supposed to do) for a couple of days and a few days before my next monthly infusion, feeling that old fatigue again, I have about 3-3 1/2 weeks of feeling great (being very cautious). Since this is a long-term procedure if it continues to work, I was wondering if anyone has had experience with IVIG infusions. Thank you so much. Mollie

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Hi Mollie

 

Although I have tested positive for the IgG anti-body, I have never experienced an IVIG infusion, so unfortunately I can't advise you about that.

 

I'm really pleased to hear that so far it seems to have helped you and hopefully you will continue to feel the benefits of the treatment.

 

Do please keep posting and let us know how you get on. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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My rheumatologist wants me to try IVIG...but I haven't yet, wondering what my pulmonologist thinks about it. She says it won't really help because of the stage of my disease. But my rheumatologist thinks it would. How are the side effects so far? Besides a headache? Keep me posted...definitely want to know more!

 

Hugs,

 

Susieq

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Hi Mollie

 

Sorry, I don't have any information on this to help you first hand either but am glad to hear you are doing well with the treatments.


Sending good wishes your way!

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Mollie,

I've been doing IVIg infusions for 6.5 years. Originally, I was started on them because of my polymyositis (another connective tissue disease), not my scleroderma. Like you, I would feel great for 3 to 3.5 weeks, then started getting fatigued again. I was getting them every 4 weeks at the time. Once my bloodwork, specifically my CPK (an enzyme that is tracked for polymyositis) became normal, we started stretching the time between infusion out to 5 weeks, then 6 weeks and so on. The more infusions I received, the longer the period of non-fatigue I experienced. I am now at 10 weeks and have been for a year. I can go the entire 10 weeks without fatigue, so it's great!!!! We're hoping that next year I can stretch it out to every quarter, but that depends on my CPK. So far so good. Hopefully after a few infusions, the fatigue won't come to visit you between infusions.

 

Like you, I do get the after infusion headache, but my isn't minor. It's pretty much a 24 hour migraine that comes exactly 24 hours after I'm unplugged and lasts exactly 24 hours, then I feel great for weeks!

 

I hope the infusions help you as much as they have helped me! Please keep us informed on how you are doing and if you have other questions, please do not hesitate to ask.


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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Dear Janey,

 

Thank you so much for your response. I am so very excited to hear that the IVIG has been working so well for you. It is so interesting that both of us have had similar symptoms with it as well. It was recommended for me because of demyelinating peripheral neuropathy and my IgG has been out of whack with my connective tissue disease. I am so encouraged that this may work for me long term and still cannot believe that I actually have 3 to 3 1/2 weeks of feeling great. I will definitely keep everyone informed of my progress and appreciate the interest.

 

Many thanks to all that responded and kind words...they are much appreciated.

 

Hugs,

Mollie

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Feeling great and have energy, or less fatigue would be sooooooooooooooo wonderful!!!

 

I'm definitely going to check into this. My doctor already has it approved. So wish me luck.

 

HUGS!

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I've had IVIG infusions for years. It's made a big difference for both Scleroderma and Myositis issues. 

 

And I see the same pattern as you describe. I have the week of infusions.  My energy ramps up. Is wonderful for two weeks or so. Then it slides down as I get ready for the next infusion series.

 

I have to load up with both Tylenol and Benedryl that week to control the headache and chills. Especially on the fourth day. I learned that I need to take the medications before any symptoms start.

 

Also. I keep track of the brands the pharmacy is sending down. I have more side effects with some brands.

 

And if the side effects are worse than usual, I ask the nurses slow the rate of infusion. That helps a lot.

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Susieq...wishing you the best of luck and will keep my fingers crossed that if you decide on the IVIG infusion treatment, it will work as well for you as it has for me so far.

 

Dorothy...thank you for sharing your experiences as well. I have only been taking the Tylenol and Benadryl on the day of the infusion but think I will continue to try the next day as well to hopefully help with the headache. It actually takes about 3 days to start feeling really good. I am so excited that the experience with the IVIG infusion has been long-term with great results for you and Janey. It really gives me lots of hope since the last two years in particular have been very difficult for me. Thank you all again.

 

Regards,

Mollie

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