Anyone had success with IVIG infusions for idiopathic neuropathy ?
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Is it possible to travel for months to an area if you are getting IVIG? I am retired and get IVIG in CO but we also like to stay in another state during the winter. How is this done?
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Hi @janstar61 I faced a similar situation with needing ongoing medical infusions, but we planned on being in Florida for a few months. It was really easy for me to get the treatment I needed at the infusion center of a hospital nearby.
I called ahead to that hospital after finding online that they had an infusion center. After speaking with the nurse about what I needed, she told me that all they needed was a prescription for the infusion faxed to the number she gave me. When that order came to her department, she called me and we set up weekly appointments for my medication. I also had to check with my Medicare supplemental insurance company to have this okayed as it was out of network. But it was no problem and it was cleared. When I arrived at the clinic I did have to register with the intake desk, resenting my Medicare and supplementary insurance cards.
So, my suggestion is to research the city where you’re staying for a clinic or hospital, and give them a call to see what their procedure is to get appointments. I think you’ll find that in a high tourist area in the south, since they’re geared up for Snow Birds, there are a lot of accommodating services.
Where do you escape to in the winter?
Sometime AZ and sometimes FL. I was just concerned I was going to need to get another neurologist in that area to go thru all the paperwork again. I am assuming once you are written and approved for IVIG it is just like any other prescription? It can be either called in or faxed over state lines? It's just a matter of finding someone to administer it. Would it be possible to have it given to you by a nurse at your home?
You’re right in that it works just like other prescription/orders from your doctor.
But you do have to find a facility to administer the IVIG prescription. I’m really not sure about a mobile IV nurse as an option but again that is something to research.
What I’d do is look online. Type in the city in which you’ll be staying. Then look for “Infusion center near me”. Most often it is an infusion center in a hospital. Give them a call to see what their procedure would be to get appointments set up.
You may have to call Medicare and/or your Medicare supplemental insurance provider to find out how to submit approval for having this done. The fact that every time I’ve gone to this clinic in Florida, there are other people next to me from their respective states having the same things done, tells me it’s pretty routine.
Just doing a quick perusal online I found this site. I haven’t looked into it very deeply but wondering if this might be an option. It seems tailored to people who travel and need consistent IV treatments.
Have you checked in with your insurance?
Thank you very much for your help. I guess my other question is, what happens to people who don't always have someone to watch over them after they get an infusion. Do they have to hire a private nurse for a few days?
From my own experience with infusions, even the infusions at my home clinic, if I had a reaction I would need to call 911 if I felt the reaction was critical and needed emergency attention. Otherwise I would call my own doctor to let them know my experience.
If I was in the clinic at the time, that was another story. Then I was quickly treated with a med to counteract the negative reaction and everything was fine.
My husband is with me so he was also my back-up plan and checked on me frequently at home.
When you travel are you alone?
Do you often have reactions to your infusions?
No , I have only had a terrible reaction when the infusion center didn't give me the adequate amount of fluids- they did not follow the doctors orders sadly and I ended up with a horrendous headache- really was unable to function for about 2 days. I am widowed and will be going on this journey alone.
With my medical situation the first thing I did was to scope out potential facilities in the area we’d be visiting…just in case. I’m not in need of infusions any longer but I do require frequent blood work done. I found a really nice out-patient clinic that’s affiliated with the hospital I’d previously visited. There are so many transient/traveling patients needing follow-up appointments that this clinic was created for the overflow. So I’m pretty sure this is becoming standard care for travelers.
Let me know what you find out and post it here. It might help some other members facing the same dilemma.
I’m so sorry for your loss. Traveling without your trusted companion and faithful sidekick I’m sure makes life more challenging and trepidatious when facing some new situations. Are these places you used to travel together?
You would need to find a physician in the state you are traveling to. They would have to become one of your physicians of care to write IgG infusion orders. This is possible
but you will have to check with your insurance company to verify they will cover treatment
in that region. Talk with your current provider that is ordering your IgG now, they should be able to assist you.
In my IVIg infusions, I am given a precursor infusion of some Benadryl to ward off allergic reactions. I have not had headaches, but developed a rash afterward (I have had 3 infusion rounds of 5 days and 3 hours each). I have also gained strength in my legs and greater range of motion. Mu neurologist is encouraged, and has ordered 3 more IVIg rounds. I am okay with that.
Ive been doing sub q gammaglobulins for several years in myself. I take Benedryl 25 mg and Tylenol 2 325mg before infusion and drink lots of water/fluids before. I rest the night after infusion and have not had any problems. The HIZENTRA, the gammaglobulins I get supply an epi pen, but have never had to use it. I have an immune deficiency and small fiber neuropathy.
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