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What does IVIG treatment feel like?

IVIG therapy also known as a normal human immunoglobulin, the use of a mixture of antibodies to treat a number of health conditions. This treatment can treatment many diseases such as mine autonomic neuropathy, autonomic small cell neuropathy, autonomic dysfunction but is used for so many other treatments and everyone has their own idea of what the treatment is like I can only explain how it makes me feel. Everyone’s experience is different. I was told you may be cold, or fluish, fatigue and painful joints.

My particular treatment plan is 5 days on and 3 weeks off. I was ready to go, positive thinking, I am not going to have any site effects, I am thinking positive. So it can be done by injection or IV. Mine is IV. One particular thing we noticed The faster the IV the more sick I felt, so a 2-3 hour treatment turned into 5 hours. This is done in a infusion center. and all around you are cancer patients, infectious disease all receiving some sort of treatment. That alone makes the entire situation more surreal. Other than the poke in the vein, it was nothing, I had planned on writing reading, but a part me needed to watch, learn and listen to what was happening, not out of disrespect for other patients but one reality of what I was enduring and 2 how lucky I was I was alive, tears for the people that were so sick, its really a difficult place to say Yeah I get to go to treatment today. So I dressed up, I was raised if you felt bad, dress up and you’ll feel better. I was the only one not in pjs, sweats etc.. I wanted to ward off all evils. I didn’t know what to expect,

The headache began, wow! I had never had a headache like this, took Tylenol, no relief, my legs hurt but that was normal but usually heat helps, not this time. I was nauseated, well I was use to that but I could conquer this, these people are fighting for their life, I can do this, I found myself tired, warn out, barley wanting to make it to the car, but tomorrow was going to be better. I came home no appetite and just slept until the tornado began, it was building and I was doing guided imagery to stop it, wasn’t working, I am getting a warmer and warmer stomach, head felt hot, didn’t even want to watch TV. I had so many things planned that I would get done during treatment.

Day 2 a little worse, Day 3 little worse, still forcing myself t dress up, said screw bringing the computer or writing or reading, I knew now, my fight was just beginning. I kept thinking just 2 more days, then sleep for a month. little did I know the days following made me sicker and sicker, found myself sleeping on the bathroom floor, can’t eat, can’t drink, my taste buds were leaving before the treatment but now gone, I was so sick I spent Christmas in the hospital, I didn’t even care that it was Christmas, my veins were giving out, and find a vein that worked was getting difficult, but I was so use to it, it didn’t hurt, my arms trashed, my hands are trashed so I had to have a port put in. This allows the treatment to have access with out having to stick me 6 times. It put me over the edge. The Doctor said it was normal for people to have this reaction after the first 5 days. Thanks for the information. I start again on the 25th, my taste buds are gone, I’m nauseated to the point the meds don’t work anymore, I will crave something like fruit and I pay after. I always thought food was suppose to be good for you, now its just a necessity to stay alive, I can even hold that down, my chest hurts, my esophagus hurts and burns like its on fire. My smell has changed and sounds, its like effecting every aspect of my life and with out food I have no energy, I guess because my body is loosing wt slowly it doesn’t matter, but when you can’t get out of bed your not going to burn a lot of calories.

So for me I pray my second treatment I will handle better and get through this easier. I have home health to do it at the house because with out a immune system, I can’t be around infectious disease. I feel so blessed, I can be in my pjs and no one will think lesser of me because it will just be me and the nurse. So I know I have along road, but it’s a road worth fighting. sometimes I feel so sick Ipray I don’t wake up, and peoples responses still blow me away, Until you try it, you don’t know how you will feel during and after treatment. so I will pray each treatment gets better and I will start to feel better, my dream to get my life back. I am willing to do anything to live. But IVIG is no picnic. But if you are starting this treatment your reaction may be different, you may have no symptoms, I pray that for you and myself.

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