I am now 6 months and 30 infusions into my IVIg journey. Now it is wait and see, as I have my follow-up Neuro visit at the end of the month. I am concerned, as any progress or improvement seems to be minimal at best. I'm not sure if IVIg will be continued, or will a new treatment be rx'ed.
I am still taken back how quickly my CIDP morphed from being basically symptom free for 7 years to signifcant demylination and acute denervation with numbness and fatique in my feet and calves.
For those who are contemplating Home infusions, here is my fresh take.
It was not my first choice, but a financial choice for me. Through the medical side on my health insurance plan, it was going to cost me $10,000 out of pocket to meet my deductables ($5000 for oct -Dec infusions, then another $5000 out of pocket for a new calender year, Jan- Mar infusions)
But I found I also had a Caremark Pharmacy plan, and IVIg was covered under their Specialty Pharmacy Progam, so I get it for $85. a month. However, you have to use their Home care service. The is included in the price. I found this service was available on my own, even my UHC advocate did not inform me that it was an option. The deck is stacked against us folks, IMHO.
I had two nurses that saw me, the first nurse's contract expired after the first month, and she chose not to renew, so I was assigned a new nurse for the next 5 months. She did a very good job, was prompt,outgoing, and was experienced. I had no complaints, other than she had a hard time getting an IV in. I finally went with a port. Not sure if this was bad veins on my part, or she was not good with inserting IV's. Actually, if you are going to need ongoing IVIg, the port is the way to go.
The biggest downside I see to Home Health is nurse turnover. They sign up for 17 weeks at a time, and can choose not to renew. So you may not have the same nurse on an ongoing basis.My nurse was stressed out because they were stretching her out among so many patients, she felt they were understaffed.
Sorry for being so long winded, to much time cooped up this week.