Lessons learned on what the doctor may consider in writing the script for the Intravenous Gamma Globulin (IVIg) order?
By LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS (Counseling) and patient with CIDP/Autonomic PN for 42 years due to exposure to Agent Orange.
Some medical practitioners according to medical experts give IVIg every 30 days and others work with the patient to find out how they respond. Medical experts support the latter approach as for most patients their bodies have not read the doctors book! Medical science does know that most IVIg has a half-life of 21 days and a patient reaches the peak of response in about 7 to 14 days, but even with this patients vary. One test a neurologist can do is to test muscle strength before and then 7 to 14 days after the infusion to see if there is improvement and the same goes with sensory responses.
This patient driven approach has been substantiated by recent research in the Journal of the Peripheral Nervous System, September 2014, Volume 19, No. 3. (There is a charge to view the article.)
According to Dr. Norman Latov MD PhD in his book Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop, for patients notes that many patients stop the IVIg too soon, before they even know if it is working or not. He states that patients should continue therapy for 2 to 3 months before making a decision if it is helping or not.
Other patients stop the IVIg because their symptoms are worse after the infusion. However, remember the IVIg is affecting the damaged nerves and the damaged nerves are attempting to work again (fire) and this can cause a temporary flare up of some of the unpleasant symptoms after IVIg. But from the experience of many patients these flare ups are temporary in the same way some of the milder reactions (headache, sore throat, feeling like you have a cold and so forth) go away quickly! Other reactions may require that you have a premedication to prevent some of the other reactions by those who are prone to have such reactions such as a patient with a medical history of allergies or asthma. On the other hand my symptoms of asthma were reduced as a result of the effect of IVIg on my immune system and this is noted in medical journals! You need to work very closely with your doctor on these issues.
I have found that it is very important for the Neurologists script for your infusion to be very specific. Now every patient will be different, but just to illustrate what I mean, here is what my script states:
EXAMPLE ONLY: (“Name of Brand Required”) Liquid 10%, 60 grams, infused at 30 ml/hour and then increased u to 100mg/hour unless the patient has difficulty, to be infused every 21 days. Some infusion centers require that the diagnosis code be put on the script and if needed in the doctors judgement, pre-mediations should be noted.
There are some pharmacists who work at infusion centers who will attempt to give you the cheaper brands stating that there is little difference between brands. This is now known to be totally false as noted in the IG Living as one brand does not fit all. So your doctor should be in charge of even the Brand that is recommended. So being specific helps you fight and put your doctor in charge and no one else.
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: firstname.lastname@example.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