What Happened When My Intravenous Gamma Globulin (IVIg) Dosage Was Reduced (8 of 12)

What happened when the Intravenous Gamma Globulin (IVIg) dosage was reduced?  By
LtCol Eugene B Richardson, USA (Retired) BA, M.Div., Ed.M., MS (Counseling) and patient with CIDP/Autonomic PN for 42 years due to exposure to Agent Orange.

Now everyone has heard of people who began doing well on a medication and came to the wrong conclusion that maybe they did not need the medication any longer.

Yes, in 2011 I began to worry about the long term impact of IVIg and decided that maybe less would be better and perhaps I could reduce my dosage from 40 grams to 30 grams.   For twelve weeks, with four doses, I went down to 30 grams and thought it would just take time for my body to adjust.

The neurologist and I think that what really happened is that the product reserve in my body was depleted over the 12 weeks and I began to spiral downward with the previous symptoms increasing.  I needed 40 grams and unfortunately this was the only way to find out!

In recent articles in the Journal of the Peripheral Nervous System, it has been noted that the current guidance on IVIg is outdated and needs to be revised. A recent abstract “Development and Application of an algorithm to individualized immunoglobulin dosing in neuropathies”, Journal of the Peripheral Nervous System, (there is a charge to view the article) page 260, Volume 19, No. 3, September 2014 which “concluded that IVIg dose and dosing frequency in peripheral neuropathies should be individualized depending on the disease subset and patient outcomes“.

We returned to the 40 grams and my body recovered and again built a reserve.   I returned to the previous level of functioning confirming that the body does build a reserve over time and that this is significant.  At least it is the best explanation for what happened with the reduced dosage.  Then in 2016 we learned that the therapeutic dosage for my weight is around 50 t0 60 grams and we are currently working on the adjustments.  Again, this is clinical proof that supports the doctors who DO NOT just go by the book, but work with the patient and their individual response to IVIg.

UPDATE ON FATIGUE (September 28, 2016):

Learned something else with my infusion yesterday. I got talked into getting 50 or 60 grams and could not figure out why I had such increase in fatigue, both physical and mental , when I was getting this dosage as they told me that was the dose for my weight.  I forgot my line that ‘my body has not read your book” and discovered it was the excess IVIg!  Yesterday I had my doctor reduce my dosage to the 40 grams which I was getting previously, and wow…. less fatigue etc…. even the day after.  I have had the fatigue explained away in a number of ways, and fatigue is common in chronic illness, but then yesterday I read the brochure again that came from Gammagard. Guess what is NOW listed at top of the reactions?  Fatigue and malaise!!!! I am considered going down to 30grams and see if that is even better at this point for maintenance!  The point here is that each of our bodies are different an the brands of IVIg are different and you need to work at adjusting the dosage over time as your bodies needs change.  Unfortunately this must be purely subjective on your part so work closely with your doctor!

BRAND MATTERS:  I learned a long time ago from IVIg Living Magazine, that brand does matter and that all brands are not equal.   The most important issue with brand is that the manufacturers now know that if sucrose is used as a stabilizer, the chances of BAD reactions increase!  The second discovery I have made is that you always want a brand that pre-bottles the product at 10% of product to liquid.  Those that are mixed increase risks on several levels and those pre-bottled at 5% of product to liquid result in you getting more liquid for your body to deal with in the infusion.

Also I was talked into getting Gamunex 10% rather than Gammagard 10% which had worked for years.  I have learned that Gamunex is better for helping with sensory nerves and Gammagard is better with help with motor nerves.  This makes sense as Gamunex is approved for CIDP and Gammagard is approved for MMN.  However, while my diagnosis is for CIDP, I think medical science is trying to split hairs here for the sake of the FDA and one needs to think which works better for you.  Gammagard works better for me!  Period.

Bottom line is to listen to your body as it speaks of what is going on, while working closely with the doctor so you have a expert second opinion!

NOTE: Copyright 2010-15 Network For Neuropathy Support, Inc. dba Neuropathy Support Network.. This article may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author. Contact him at E-mail: gene@neuropathysupportnetwork.org

PATIENT TO PATIENT – Disclaimer:  Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.   These articles reflect the subjective experience of the patient while living with neuropathy and Intravenous Gamma Globulin Infusions

 

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Article #8:

What Happened When My Intravenous Gamma Globulin (IVIg) Dosage Was Reduced

 

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How Intravenous Gamma Globulin (IVIg) Infusions Has Affected My Life

 

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About the Author

LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

Col Richardson has suffered with severe neuropathy for over 45 years. A 27 year military veteran and veteran of the Vietnam War, he was diagnosed with a progressive chronic peripheral neuropathy resulting in severe disability. This diagnosis has been confirmed as due to exposure to Agent Orange. It was not until 2010, 42 years after his exposure to Agent Orange, that his diagnosis was recognized by Veterans Affairs as service connected.

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