posted
Hello out there my daughter had her first IVIG Treatment this week she had 27grams 5 days in a row, she is not doing very well at all, she is completely weak,shaking,headache,stomach ache she just is all around scared. She would like to know if anyone has done this and what your experience was!!!! Good or Bad
Posts: 200 | From Massachusetts | Registered: Apr 2007
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posted
there are different protocols. Some do it once a month only one day and there are different IVIG brands. Please contact Tracy9 on here as she has been through all issues with this. God Bless
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Have you called the doctor?
I assume your daughter did the premeds - and was/is kept hydrated.
I do a much smaller dose of IVIG every three weeks - ie 10g GammaGard Liquid. Do you know what brand your daugher received? How old is she? Why is she receiving IVIG? For something like CVID? She has LD?
Just a thought - did she receive steroids as is usually prescribed? Perhaps the steroids - which are used to help with any IVIG could possibly I repeat possibly be causing some of her symptoms. Headaches are a common side effect of IVIG. There have been cases of IVIG causing aseptic meningitis - I have only read this - don't know much about it - but seems to me if you go to the ER you must let them know about the IVIG and the kind of meningitis that can happen. You might want to research this. But really call your/her doctor!
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Further - I hope the IVIG was infused very slowly. That dose I would think each day should have taken about six hours to infuse. Infusing too fast can make one feel dreadful. Even though it is late - weekend night I still hope you have contacted the doctor. Will add that there are online discussion groups for folks taking IVIG. Do a search and find a place to post and hopefully you can get some replies - for now and future. I will repeat - talk to her doctor or whomever is on call from his office.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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My son had his first IVIG treatment in June and will be having another in August. He had two consecutive days of infusion for 6 hours each (I think he was given 5 or 6 g).
He did get migraine headaches (which is a normal side-effect) as well as a low grade fever overnight and generally did not feel well. It did subside, however.
The protocol is determined by the doctor and can be adjusted if reactions are severe. I know when my son just stared being infused, he developed the migraine headache right away, so the nurses slowed down the infusion and that helped.
Perhaps it is too much for your daughter, especially if she is being infused 5 days in a row? You need to discuss this with your doctor.
Posts: 8978 | From Illinois | Registered: May 2006
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susank - I wanted to clarify a few things for you. IVIG is not a treatment for Lyme disease, but to help correct an immune deficiency. In my son's case, he has an autoimmune condition which is a result of having Lyme disease and co-infections.
Steroids are contraindicated for Lyme and they are not administered with the IVIG treatment (per our pediatric Lyme doctor's instructions).
I specifically asked the Immunologist about the aseptic meningitis question. I had done my research on IVIG and also had questions about this.
He informed me that this occurred in people who had diabetes when this treatment was first being used and the Gamma Globulin solution had sucrose in it. Now, it is highly refined and purified through a rigorous process and the sucrose has been removed.
Gammanex and GammaGuard are the best ones to use.
Posts: 8978 | From Illinois | Registered: May 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
You can still get aseptic menningitis from it. Tracy got it at least twice, maybe 3 times. I seemed to get it, too, from the 5 day loading dose, although the ER said I didn't have it from the Lumbar Puncture. But it was the worst migraine of my life, and I couldn't bend my neck even a little.
Call her dr ASAP!
The 5 day loading dose, I have since learned, is too much for many people, and not necessary (I switched LLMD's, when mine moved).
Yes, make sure that the dr specifies that it should be done very slowly, ie, over 6 hours. And she should be premedicating with Benedryl and Tylenol to prevent any symptoms. (on dr's orders, that is). And LOTS of fluids for several days before, during, and after. sometimes the drs order IV fluids, too, which helps.
Posts: 3770 | From around | Registered: Mar 2008
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I thank everyone for their responses, I called her Dr, she said to keep her drinking and if any more symptoms start bring her to the hospital, well, tonight her lungs sound full, like she has pnenemia (Spl) again, she has had this at least 20 times in her life, so I will just wait
Posts: 200 | From Massachusetts | Registered: Apr 2007
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-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I have nothing to add. Except hugs and healing thoughts for your daughter. And for you, must be horrible for you to have to see her going through this. I hope she feels better soon.
Posts: 1728 | From USA | Registered: May 2011
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