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
Facts About Intravenous Gamma Globulin (IVIg)
My Neuropathy symptoms prior to receiving Intravenous Gamma Globulin
Why I started Intravenous Gamma Globulin (IVIg) and how it happen
My first experience with Intravenous Gamma Globulin (IVIg) (IVIg) in April 2004?
How Intravenous Gamma Globulin (IVIg) Affected My Long Term Neuropathy Symptoms
Surgery while on Intravenous Gamma Globulin (IVIg) with CIDP
What Happened When My Intravenous Gamma Globulin infusion (IVIg) Was Delayed
What Happened When My Intravenous Gamma Globulin (IVIg) Dosage Was Reduced
How Intravenous Gamma Globulin (IVIg) Infusions Has Affected My Life
What Doctors May Consider in Writing the Script for Intravenous Gamma Globulin (IVIg)
Getting Help Accessing Intravenous Gamma Globulin (IVIg) and with Insurance and Product Brand Questions
Critical Needs in Intravenous Gamma Globulin (IVIg) Neuropathy Research and Training
Hello. Can you please send me a list of Immunology physicians within a 50 mile radius of morris county that will prescribe IVIG? Thank you.
Pam: Morris County but I need to know the STATE? Also knowing your complete address would help and what big cities are nearby? I am also going to send to you an article that you may want to give the doctor regarding justification of a trial to see if it works for you. I will send this by E MAIL.
I work for a national company that provides IVIG at home and I can help provide this..
I work with many doctors, let me know if i can help.
I think my PN is caused by autoimmune issues. I have an elevated M protein, and a positive ANA. I am seeing a rheumatologist Monday. I too would like to know of any doctors in Dothan Alabama that prescribe IVIG. What started last March has spread like wildfire throughout my body. I actually had pain in the back side of my tongue and a part of my face last night. In October I was diagnosed as severe by the electrode test. At that time only my legs and arms were involved. Thanks for any guidance.
Cindy: I am going to respond on the location of any Neuromuscular Neurlogist by e mail and also will attach an article supportive of trial of IVIg that you may give to the doctors. IVIg is used for almost all autoimmune neuropathies and works for many patients but sometimes does not work as well for others and we do not know why. Doctors also use a special dosage of steriods in some patients and it works, or they try plasmaphoresis, or an immune suppressant. Anyway, will send information by e mail as I look for any possible doctors trained in neuromuscular neurology near you. Actually if you find one who works with MS patients it is likely they may have some of the neceessary training. Some patients have found support at the Cleveland Clinic or Mayo Clinic hospitals in this regard. Watch for my e mail….