← Return to IVIG Infusions

Discussion
giarc60 (@giarc60)

IVIG Infusions

Neuropathy | Last Active: 1 day ago | Replies (185)

Comment receiving replies
@loribmt

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?

Jump to this post


Replies to "From my own experience with infusions, even the infusions at my home clinic, if I had..."

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.

I already had chronic migraines before my infusions started for IVig. I also received the infusion at an infusion center, now at home. After my third infusion I thought Dante needed to add another circle. After the fourth it took me weeks to recover
I stated cranial sacral pt and that relieved so much of the pain.
I asked the nurse if it could be done as slow as the first time, so much better. The speed of delivery is set by your weight, and "the pharmacy says" so I asked for it to be slowed down regardless of what the pharmacy says I can tolerate, my body was miserable so we need to find a solution. I also drink about 100 ounces of water and other things, no or very little caffeine, the day before, the day of, and the day after. My headaches have been reduced drastically working with the health care providers that listen. I have neuropathy, for which I do not have a specific diagnosis as I did not want to go through the testing. I have been taking Metanx ( had to stop due to astronomical vit b levels,) and used cold laser therapy and it was very much under control, I had to stop the Metanx and the neuropathy
is back but not horrendous. I do not know if would be as bad as it was before I started ivig. After all the misery having the IVig has helped me so much. I saw my friend the other day and she thought I no longer looked like 'death warmed over,' so yet another bonus!