My first experience with Intravenous Gamma Globulin (IVIg) ( 4 of 12)

What happened on my first experience with Intravenous Gamma Globulin (IVIg) in April 2004?  By LtCol Eugene Richardson, USA (Retired) BA, M.Div., Ed.M., MS (Counseling) and patient with CIDP/Autonomic PN for 4 years due to exposure to Agent Orange.

Dr. Norman Latov MD recommends that a patient try IVIg for at least 3 months before deciding it is or is not working.   For some patients it takes this long and every one of us responds differently to the treatment.  A good measure for effectiveness beyond reduction in neuropathic pain or sensory nerves, is for the doctor to test muscle strength pre-infusion and then retest muscle strength about 7 to 10 days post-infusion.  The same with the doctors test of sensory nerves pre and post infusion. If either of these show any improvement then it is working. Do not be surprised if you have increased strange sensations, as this indicates that the IVIg is trying to get damaged nerves to work. Some patients require the gamma every two weeks, some every 21 days, some 30 days, some six months and some patients get it once and that is it.  If a doctor states some like they only give it every 30 days, tell them that unfortunately your body has not read their book, and if the doctor does not work with you and your response to gamma, find a new doctor.

The trick I have learned is to have the next infusion a week before the symptoms become significantly worse!  My symptom response over the 21 days is not like a perfect Bell Curve, but a Bell Curve with wiggly ups and downs of symptoms in the half moon curve.   Symptom resolution peaked at day 7 to 14 and then symptoms begin to increase as I approached day 21 while growing significantly worse by day 30 and serious by day 42.    Maybe it is because so much damage had been done to my nerves that response was so strong, weird and positive within one to two hours of the first infusion.  Other patients wait longer to become aware of significant improvements especially in motor nerve function.  The best way to determine if gamma is helping is to have the doctor test sensory and motor problems before and then 7 to 14 days after to see if there is improvement.

While sitting in my chair for the infusion, I realized that the bottom of my feet began to feel like thick rubber and within another hour, like thick rubber balloons!   Something was happening and as strange as it was, I could feel something.  Thick rubber and balloons for feet were fine with me.   Initially it was so strange I was actually fearful of telling anyone.  Maybe I really am crazy!  Never fail to tell the nurse or doctor of responses to a treatment!

But then I stood up and was thrilled as I felt more of my legs and on movement could even feel the skin!   Breathing within hours became easier and I could talk and breathe at the same time.  By the end of the day I realized the sensation of spinning was down from a 4-7 to a 2-3 and the severe electric shocks went from an 8 level to a 3.

The next day I realized that the bone pain on walking was gone and the sensitivity to touch dropped to almost nothing.

Later a trip to the neurologist confirmed that reflexes had improved significantly except for the reflexes on the top of the foot.  These never have recovered.  Remember, reflexes are not a good indicator ALONE for diagnosis as these vary between patients which may have nothing to do with recovery!

Now there will always be some issues for each patient for the infusion requires team work with cooperation and communication between doctor, nurse and patient.  Some patients will need to be pre-medicated to prevent allergic reactions.  Others may have the infusion done at a greater infusion rate. But one size of infusion rate and even the product does not fit all and the patient must be first and foremost at the center of this decision.  My first infusion center wanted to infuse the product fast based on the nurse’s schedule!  I asked Dr. Latov once why this was so and he responded, “Everyone is in a hurry and time is money.”  Medical honesty always feels good!

Now before I tell you what I learned just today, May 9, 2016 from a Nurse Educator Laura Smith RN, IgCN, who has worked with IVIg for several decades, let me tell you what we thought was wrong in 2004.  We found that in 2004 that the infusion speed for me must be at 30 ml/hour with Lasix pre and post to prevent water build up/congestive heart failure.  Now because back in those years there seemed to be very little knowledge or information on loading dosage, infusion rate, IVIg products where thought of as being the same (they are not – as one brand dose not fit all and they are different) , the issue of sucrose as a stabilizing agent (bad) which caused many reactions in patients in prior years. Because of the extra fluid from the cheaper brand, it took lots of trial and error over a year to find that 40 grams was optimum for me as I felt worse at 60 or 30 grams.   Patients must work to find out the frequency needed for them as this has to do with many complex issues.  Some patients frequency will need to be adjusted as 30 days was not good for me as symptoms began returning and we found that every 21 days worked for me as we learned that the half life of IVIg is 21 days  as a base line.  If the doctor tells you that they only give it every 30 days, find a new doctor and tell them that your body has not read their book.

To however show how we must always continue to learn, as I mentioned above in 2016 with the help of the Nurse Educator on IVIg, we spoke about the fact that my congestive heart failure and water build up was ‘more likely than not’ in 2004 due to my getting the cheapest brand possible with sucrose as a stabilizer and the fact that it was a 5% product which meant that I was getting twice the fluid!   Today with the better brand of Gamunex C Liquid 10%, there is no sucrose as a stabilizer and it is 1/2 the fluid with the number of grams I am receiving! Thus the problem with fluid overload in 2004 was more likely related to these issues.  I had no problem with eliminating the Lasix!

Two months later, we followed up with  first increasing to a therapeutic dosage to 60 grams based on my weight.  We then increased the speed to 150 ml/hour and soon learned that this was too fast (blood pressure increased) and that 100 ml/hour was what I could tolerate.  Now it is important to start slowly, especially if over 60 years of age and then increase as you tolerate the rate.  As always if there are issues, the infusion will be paused to allow my body to adjust.

A word about the importance of hydration.  Two days before any infusion with IVIg, it is very important that you drink at least twice the water you normally drink and for me that is at least eight glasses of water (8 oz) to hydrate your body.  This prepares your body for the ‘shock’ of the infusion and sets the stage for better adjustment to the dose during and following the infusion.  It is further recommended by the Nurse Educator who works with IVIg, that you then following the infusion return to your normal intake of water, otherwise the body the next time will not respond as well to the increase just before the next infusion.  At least in my generation, we got away from drinking enough water for our health and we all need to drink the recommend normal dosage of water for better health and cleansing of the body.  Our bodies need far more water than we normally drink and when you are chronically ill, this is the only way the body has to dispose of toxins and other things in your body!

The doctor will find that the brand is very important as sucrose used for a stabilizer and amount of IgA in the products varies and both of these have been identified as causing many problems.   Some patients will find that the premixed bottled brands not only removes the issue of adequate mixing (powder must be mixed), but have less fluid volume and this becomes important to prevent fluid retention.   Conversely, other patients do well on the mixed brands, but if we have learned anything as noted in IG Living Magazine, one size does not fit all when it comes to IVIg and this decision needs to be driven by medical professionals, not the pharmacist at the hospital and not cost considerations if we are to focus on patient care.

Several times during my first infusion they stopped the infusion for 15 minutes as it felt as if I were drowning because of the water issue with the 5% brand.   Normally when a patient has problems or strange reactions, stopping the infusion for 15 minutes will help resolve minor issues especially when the infusion rate is lowered pending discovery of the real problem and for me it was the brand and 5%!

Today May 9, 2016 because of two caring experts on these subjects, I have found more answers to the many questions about my own infusion and we will be passing more information on to IVIg patients in these articles as we learn!  Education and learning are life long tasks and should never stop as long as we are alive!

Okay it is now June 28, 2016 and we have learned that one of the side effects of IVIg is fatigue!  At the 60 gram dosage, my fatigue level became severe so I stopped driving as I began to feel severe pressure in my ears which has become a real concern.  I spoke to Dr. Waden Emery MD FAAN and we are going to go to 50 grams to see if this makes a difference in fatigue. Been learning since I began the infusions in 2004 so learning never stops as we learn to live with IVIg.

NOTE: Copyright 2010-16 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

 

RELATED ARTICLES:

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My Neuropathy symptoms prior to receiving Intravenous Gamma Globulin

 

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Why I started Intravenous Gamma Globulin (IVIg) and how it happen

 

Article #4:

My first experience with Intravenous Gamma Globulin (IVIg) (IVIg) in April 2004?

 

Article #5:

How Intravenous Gamma Globulin (IVIg) Affected My Long Term Neuropathy Symptoms

 

Article #6:

Surgery while on Intravenous Gamma Globulin (IVIg) with CIDP

 

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

 

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3 Comments

  1. Col., this is Lydia Reyes, once more…? My neurologist has done the skin biopsy, and stated that because of how long this went undiagnosed & untreated that the only thing they could do for me is keep me comfortable. She also has done extensive blood work, and came to the conclusion that it is also, idiopathic. Then referred me to a SFN specialist. I’m scared & confused

    1. Lydia: I do not understand the comment about ‘how long it went undiagnosed & untreated’ as that has nothing to do with a diagnosis or a treatment? I went for four decades undiagnosed and untreated and IVIg was appropriate since 2004 and has saved my life. Did they show you the report from the skin biopsy and was it done by a firm who knows how to do this? Idiopathic is not a diagnosis that is in anyway helpful. I will send you an e mail with suggestions directly to you.

  2. It is so refreshing to read an article documenting so clearly a pragmatic view of CIDP treatment! After 10 IVIG treatments at six week intervals, always concluding in a fifth week ‘dip’ I may finally get my schedule changed to every four! Also … Similar experience to yourself, because of time constraints my last treatment was squeezed into two days not three … And surprise surprise, I have had virtually no benefits from that treatment … Eight bottles in one day surely is clearly asking a great deal of the body to absorb!
    Thank you so much for mirroring my own words to my specialist … It’s so nice to hear someone describing ‘on your behalf!!!’
    Andy Dark

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