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#1 rlbrussell

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Posted 30 October 2008 - 04:25 PM

I finish my first round of IVIG tomorrow. So far things are going well except that I have a persistent headache. Anyone else experience this?
Rosa
Diffuse Sclero
dx Jan 2006

#2 janey

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Posted 30 October 2008 - 05:11 PM

Rosa,
Yes - I use to get them on the last day of the infusion or the day after. Tylenol and bed rest would help get rid of it. It's a normal side effect apparently. Mention it to the nurse tomorrow. She might be able to pre-medicate to prevent it from reoccurring. I hope it doesn't last long and that you get the IVIg benefit quickly.

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#3 rlbrussell

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Posted 30 October 2008 - 05:52 PM

Thanks Janey. We hope to see a benefit for the IVIG soon. If this doesn't help me get stablized again then we are looking into stem cell transplants.
Rosa
Diffuse Sclero
dx Jan 2006

#4 summer

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Posted 30 October 2008 - 10:44 PM

Could someone please tell me what IVIG is, and what is it used for?

Many thanks
Celia :unsure:

#5 jefa

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Posted 30 October 2008 - 10:59 PM

IVIg is IntraVenous Immunoglobulin. This link will fill you in on the treatment.

IVIg is a blood product extracted from plasma of about 20,000 donors. It contains the pooled human immunoglobulin Type G which are antibodies of the immune system. It is used to treat immune deficiencies and autoimmune and inflammatory diseases.
Warm wishes,
Jefa

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#6 summer

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Posted 30 October 2008 - 11:08 PM

Thanks for the link and quick response Jefa, it is most appreciated.

Take care
Celia

#7 susie54

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Posted 31 October 2008 - 01:13 AM

Hi Rosa,

Hope you have good results with the IVIG . I may be having treatments in the future as this was what I was proposed with by my neurologist and I am headed to Houston in a couple of weeks for a muscle and nerve biopsy. I have progressing neuropathy. Let us know how it works. Sorry to hear of headaches and I hope they get better. Susie54

#8 RememberingToSmile

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Posted 31 October 2008 - 01:40 AM

For my IVIG weeks, I make sure and drink plenty of water before and during the infusion, I take my Tylenol before and during the infusion, and I make sure to get up and move around (with IV pole in tow) a couple times during the process. Moving around keeps me less stiff and keeps circulation going.

I rarely have headaches - but if I have a cold or don't feel well in general, I make sure and take the benedryl they offer as preventative.

I hope you find a strategy that works for you, and I hope the IVIG does you good.

My schedule has been 1 week IVIG (5 hours at clinic) then 3 weeks off. I feel the effects the most during the second week off.

I was lucky and started feeling the benefit after the first treatment week. However, it seems everyone is different.

-RTS

#9 rlbrussell

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Posted 31 October 2008 - 05:21 AM

I am going to try to move around more today and drink more water. Thanks for the advice. There are so many people in here getting different kinds of infusions. I have my computer to keep me occupied but most everyone looks pretty bored.
Rosa
Diffuse Sclero
dx Jan 2006

#10 Peggy

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Posted 31 October 2008 - 02:40 PM

I too am starting my IVIG up again next week. I did this back in April, May and June and I did all of the pre-meds. Even with them I would also get a headache and some nausea. They are really good as soon as it happens to get an order from the doctor to combat either symptom. My IVIG takes from 8:30 to 5:00/5:30 for 3 days each month. I didn't see the results or realize the results until about July and then realized that the pain I had was better. Now it's November and the pain in my legs is terrible so I'm hoping that these treatments (Nov and Dec) will work again. I do know that it brought my CPK numbers from being off the charts to completely normal. Now that it's been since June that I had them my CPK numbers went back up so now we'll see if it works again. I wish you all the luck and I hope that you have really good results. Please don't hesitate to ask your nurse for something for the headache or any other symptom that arises.

Warm hugs,

Peggy