Posted 30 November 2010 - 11:48 PM
Posted 01 December 2010 - 01:48 AM
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.
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Posted 01 December 2010 - 01:53 PM
Posted 01 December 2010 - 02:43 PM
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.
Posted 02 December 2010 - 06:55 AM
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.
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Posted 03 December 2010 - 01:18 PM
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.
Posted 03 December 2010 - 02:42 PM
I'm definitely going to check into this. My doctor already has it approved. So wish me luck.
Posted 04 December 2010 - 03:56 AM
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.
Posted 04 December 2010 - 09:48 AM
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.