What is the effect of chronic neuropathy and the Intravenous Gamma Globulin (IVIg) infusions on my life?
The stress and impact on my family has been great, requiring much adjustment and rescheduling of my wife’s own medical appointments. We have adjusted our social life and activities to the limits of the mental and physical strength available to both of us. These adjustments have not been easy; but, it is how life with chronic neuropathy that can only be treated with IVIg has affected my life.
The one thing about chronic illness is that it is a growing understanding of what each person is experiencing. Our limitations now require less explanation, as we grow in understanding of what each of us must face as reality. We have learned for the most part to make lemonade from the lemons of chronic illness. Humor helps; alone time helps; and once in a while a good cry or scream does not hurt either.
My life schedule is determined by a 21 day cycle. After many years this has gotten old as it takes two days, 6 hours each day to receive the infusion.
My solution is to take my computer and continue my volunteer work in helping patients, writing, building my website and distributing the DVD production. These are things that give meaning to my life and between sleeping makes this time more productive and meaningful.
The one hopeful development is the research that supports the switch to the use of Subcutaneous self administered IVIg for CIDP. According the the article “it has been proven to be well tolerated and of similar efficacy compared to the infusion route”. See: “Immunoglobulin Therapy in Chronic Inflammatory Demyelinating Polyradiculoneuropathy: Why subcutaneous route?” page 279, Journal of the Peripheral Nervous System, Volume 19, No. 3, September 2014. (There is a charge to rent the issue.) The issue for me is that I am scared to change given what happens when I do not get IVIg at all. Maybe one day I will get over my fear as this would certainly improve my life schedules!
If I leave the Fort Lauderdale area, I must make arrangements in advance for the infusion at other locations. Sometimes this is easy and other times it is very difficult depending upon the State, the pharmacist, hospital/infusing center and doctors. You get very tired explaining your diagnosis and gamma for your condition to doubtful critics but in 2015 I notice this is getting easier as more medical experts understand the condition and IVIg.
Working with my local neurologist who knows me is very important in these arrangements. He can provide the history, diagnosis, and script to others who then respond accordingly. The one problem that crops up occasionally is the BRAND issue and with a patient help line to the supplier of my brand the claim that the hospital cannot get it is resolved with fact; a script from my doctor that is brand and infusion specific; and perhaps a call to the hospital Administrator, these events involving both the lack of knowledge of the local doctor and the pharmacist are resolved especially when you mention the legal word as a last resort and it does get their attention. The issue of “one size of IVIg fits all’ was laid to rest in the BioSupply Quarterly Fall 2014 who set forth the facts that one size does not fit all. I take a copy of this article with me when I travel. See: An excellent source of information can be found at FFF Enterprises BioSupply Quarterly, which publishes a quarterly magazine on the issues of IVIg. Their website is at BioSupply Quarterly:
In one State a pharmacist who insisted that they were giving me my brand except it was not in the usual sealed bottle. They then attempted to tell me that they had to put several bottles into a bag and that is why it was different. I used my cell phone to call my brand contact to see if this was normal. They had me put the nurse on the phone and this switch to “cheaper” was stopped. The fight is not easy and does not ever seem to stop. I pray for research and training to catch up with the patient struggle.