I have been diognoied with Autonomic Neuropathy And peripheral nurophathy and CIDP. I have had my first round of IVIG for 4 consecutive days.
On the last day they increased the flow of the drip from 150mil to 180mils. This increase left me with a migraine and feeling vicious. Why do the infusions need to be rushed. Is it so they can infuse more patients?
My next infusion I had on the 23rd December was given to me at the rate of 150mil and I was fine. No migraines or other adverse reactions.
I feel like I have more energy and the pain symptoms in my legs and feet do not seem to be as intense or painful. My fingers are crossed.
My neurologist told me he would refuse to use any nursing service that completed the infusion in less than 4 hours, i. e. if they increased the rate for their convenience. He indicated that virtually all the complaints (headache and nausea) that he had received in the past from patients came when the infusion rate was accelerated. He has had zero complaints since insisting on a slower infusion. Perhaps that’s what you experienced, Darryl?
Yes, 100% agree with you.
Thanks for your reply.
Darryl
Makasi! Welcome to the community.
Did you get any of the answers you were asking about? If not, why not try a new thread, just for you. Go to the home page and click on +New Topic and you’re on your way.
Yes I am pretty sure that you are right. Since my first series of infusion when I experienced the headaches I have had the infusions at the slower rate of 150 and I have not had any adverse reactions so now each month I just remind the nurses that my rate is 150.
Thanks for your reply Malawi.
Where are you from ?
Darryl
I’m so sorry Malasi,
I corrected the spelling of your name twice. And after posting realised that auto correct misspelt your name for the third time. Apologies .
Darryl
No problem…autocorrect is not our friend, Darryl. My IVIg was recently changed from 600 ml 2 days/3 weeks to 800 ml 1 day/3 weeks and I ended up with a mild headache. My nurse slowed the rate and added an extra hour to the total time. Headaches gone! Too much of a good thing at one time is not a good thing…
Yes I know what you mean. How did you find the change in frequency effect you?
I’m about to get buzzed with electrodes to test my nerve conductivity again to see if after 4 months of IVIG is same , better or worse compared to my earlier results before treatment started.
I’m also getting a EcG scan of my brain. I’ve developed a slight tremor in both hands and I have night terrors…during sleep. We don’t know if it is caused by meds or something going wrong in my brain…
Trying to stay positive and enjoy the good days.
Cheers
Darryl
Wow, Darryl, sorry about the tremors and night terrors. That must be very unpleasant as well as puzzling. I hope you get some answers with the medical tests. I just had my nerve conductivity retest in January. My neurologist indicated that there was little change and he actually did not expect to see much, that retests don’t usually show much change. That’s one Dr.'s opinion for what its worth. I haven’t to date experienced much difference strength-wise going from 2 day infusions to one each three weeks. I guess I need more than just one round of infusion and living to evaluate it. Again, my neurologist said that in his experience changes in CIDP patients come about slowly, like an ocean liner turning, not usually rapid, jet-ski type changes one way or another. Best wishes in tracking and figuring out your autoimmune journey. Some lousy adventure, eh?
Yes not the journey that I would have chosen. My hope is to arrive at a better location then the one I’m at at present…
It is good to hear what your nuero told you about what to expect with the retesting of nerve conductivity test. It is new info for me and let’s me not get my hopes up for a huge measured improvement. In fact it makes sense of how i don’t feel much improvement in myself.
Hi Tinapet,
When I first started treatments, my hands, face and feet were all numb. The feeling in my face and hands came back pretty quick, but my feet remain fairly numb.