I am looking forward to some traveling to get away from the cold northeast winter weather. I was wondering how that works with IVIG treatments? I have always received my monthly treatments in an infusion center. Any input would be appreciated. Thank toy
Can you call in to your infusion center & see if they have a location where you are going or can refer you to somewhere?
I get my infusions every two weeks . They have a half life of another week for my system before symptoms start to return. My nurse belongs to a network that is licensed in all states. My pharmacy ships my meds to me two doses at a time from Florida to California. So the can time deliveries where ever you want. I use Accredo.
I live in Maryland and get IVIG treatments once a week. I spend three months in Florida every year. I have to find a neurologist and an infusion center every year, although I've finally found one in the area where I stay.It hasn't always been easy. I hope it goes better this year. I can usually skip a week without too much effect but this past year I ended up going three weeks without a treatrment.
I do line up as much as I can ahead of time but an infusion center won't schedule you without a doctor's order and a doctor won't issue that until he's seen you. .
I am off IVIG now, but had for some time I had three days of infusions, every three weeks. I would try to plan trips and vacations so that I traveled right after a round of infusions, so that I was feeling my best. I was already retired by that point, so I had a lot of flexibility.
When I was planning one fairly long trip, I talked to the head of my infusion center. He told me about another center, near to where I was going, which was headed by a friend of his. He said, "If you have problems while you are away, just go to the center, and have them call me. I will make sure you get in!" I know that not every doctor is this accommodating, but it can't hurt to ask your doctor who he knows in the area where you are going. Personal connections help a lot.
Joe, I just wanted to let you know that I get my IVIG treatments at Florida Cancer Specialists. I live in North Port, FL bit they have locations all over the state. I had to establish myself with one of the their doctors as a formality but he does not treat my CIDP. When I went back to Buffalo this summer for an few weeks I was able to get my infusion from the doctor I had there before I moved to FL.
Hi. I travel frequently.. mostly not more than 5 weeks away these days and my local oncology unit is very cooperative and I just adjust my dates that I fill up last days before going and asap on return... not going to make a lot of difference really.. sometimes if I get a bit long the symptons start to increase but if it is more pain I up my Panadol Osteo and that seems to work out. I can take up to 8 a day but mostly I only take 2 in the morning and 2 at night .There is no doubt that my CIDP is progressing and I am becoming a bit restricted but at 77 plus I reckon I am pretty good compared to some other poor souls around me ( some departed) and I thank God every day for the health I have and that I can still be useful and productive. Don't get too stressed about moving your ivig dates around a little. Incidentally my son and daughter in law are in the US at the moment and just incurred a $13000 bill for 5 hours in consulting only plus a cat scan for stomach pains. !!! In Australia that would be free in the public hospital system and maybe $500 in the private system. Maybe some of you guys should consider migrating here.:) :) :) Oziurn
Just go for it! Climb the mountains while you still can (even if you have to crawl to the top!!!)
But first talk to your IVIg specialist about timing options. As oziurn says - moving dates is generally not a problem.
A few clues.
Take a cruise - but check with the cruise line to see if the doctor on THAT ship will do the IVIg (if you must have it on that schedule).
IVIg product (usually) has a reasonable shelf life without refrigeration so transport is not a big issue if you have the paperwork.
As others have said - lots of places can do IVIg so it is just a matter of organisation. Any nurse can do the physical job but they like to have a doctor on hand AND that doc should be able to contact your doc in the (usually) unlikely case of complications. I am aware that my local has patients they only see about every 18 months because they actually take that much IVIg with them and a local doc does the job.
I always plan my travels just after my infusions and my return in time for next one .I have been all over the world with no problems. Have fun