Hi everyone. I've been on IVIG for more than a year. It is really helping with my symptoms but each time the side effects feel a bit different. Sometimes I get a sore throat, sometimes canker sores, sometimes headaches and backaches, and sometimes nausea. Honestly, the first couple days after a treatment I usually feel pretty lousy. On rare occasions I feel nothing and am immediately back on my feet! Has anyone else noticed that side effects from this treatment vary? Does anyone know why this is happening?
I experience the same. For me, if I hydrate well before the infusion and during it seems to go better. Also, if the rate of infusion is too quick I get very bad symptoms. (Bad flu feeling, headache, nausea, even my teeth will ache!)
Thanks, Laurie. Sometimes I wonder if I am imagining it all. Although I'm sorry you are going through it as well, it is comforting to hear that I'm not the only one who experiences these side effects. The IVIG nurse initially told me there are no side effects -- that most people walk away feeling as they did when they came in the clinic. That is definitely not my typical response! laurie said:
I experience the same. For me, if I hydrate well before the infusion and during it seems to go better. Also, if the rate of infusion is too quick I get very bad symptoms. (Bad flu feeling, headache, nausea, even my teeth will ache!)
I'm still waiting for Medicare and my Anthem supplemental insurance to OK my IVIG. My friend who has GBS has been getting her infusions for about 15 years. She says that if she hydrates and takes a Benadryl the day before and during her infusion, she's fine.
What do most of you use for pain management? I wait until I can't stand the burning at the end of the day and take two Vicodin. I know that is probably not what most of you use. With Dystonia (another neurological disorder) I don't crave more and more. Only good thing about Dystonia.
I have the same side effects as you. I teach school and I have my treatments on fridays becasue I know I will most likely feel so bad i'll stay in bed most of the day on saturday.
About my second infusion I wound up with a bad headache and this was related to the rate of infusion. They now have an infusion rate worked out for me and since then I've not suffered this issue again. For me the 'side effect' that has the greatest impact on me is the severe rash that appears after 3-4 days (I've even changed brands of IVIG to see if this would mitigate the effects). The rash is severe, precludes sleeps and bleeds. I've found Prednisone is the best way for me to deal with the rash. While it's a 'crazy' situation to have the IVIG to boost my immune system and then take an immunosuppressant to deal with the rash - it works for me.
I have no idea if it's the 'mix' of the IVIG or my own health but I absolutely experience the same. Sometimes I wake up on day two full of energy and sometimes I will feel completely flu-like for the week following. If you aren't already, ask your doctor about adding in a bag of fluids to run concurrently for both days and still hydrate with gatorade or water. If you ever experience a stiff neck or high fever go to the ER asap!
I don't know if this is standard protocol for IVIG prep but I take 50mg benedryl and two tabs of Excedrin (a tylenol/aspirin/caffeine mixture). And like others, I hydrate before and during the infusion. A somewhat slower infusion rate helps too. With this I find next day side effect (headache is all really) is not too bad and can be managed with another Excedrin or two. My neurologist and I settled on Gamunex C - no sodium or sugar and worked out an infusion schedule where I get a monthly dose over 2 successive mornings.
Hi Lesa. I had my load-in dose 2 weeks ago. I have another treatment in a week. I was told the get very hydrated the day prior to treatment, which I did. The nurse gave me a Benedryl and 2 Tylenol 30 minutes every day prior to treatment. Every day was fine, till I got to Friday, last day of load-in. That evening I started with headache, then low grade fever. They told me to take 2 Tylenol every 4 hours. I lumbered up in bed and sweat it out. Then on Sunday morning I had nausea. My doctor called in Zofran to really help with that. That only lasted for a day. My next treatment is in a week, hopefully it will not be a repeat.
I definitely have side effects each treatment. Last few times my BP lowers to 80/50. Last time 70/40. And I feel dizzy. I intermittently feel flu like. I find the lower my BO goes the worse my symptoms. We added saline to my treatment. I am definitely asking for slower infusion rate next time. The fatigue after last treatment was worse. I have to learn to speak up regarding needing slower infusion. :). It’s not always easy to be your own advocate.
I experience the same it is awful! I have been getting 500ml of saline but my nurse thinks with my BP I should be getting a full liter of fluids. We also infuse over 4.5 hours instead of 3.5 hours and that helps a small amount. Make sure you're eating a salty snack during it will help elevate your BP.
joanne said:
I definitely have side effects each treatment. Last few times my BP lowers to 80/50. Last time 70/40. And I feel dizzy. I intermittently feel flu like. I find the lower my BO goes the worse my symptoms. We added saline to my treatment. I am definitely asking for slower infusion rate next time. The fatigue after last treatment was worse. I have to learn to speak up regarding needing slower infusion. :). It's not always easy to be your own advocate.
What happened when you had a stiff neck? I just had my three week infusion yesterday. I have the flu-like symptoms. Half of my neck is stiff, but is probably due to my Dystonia. I get my Botox shots for spasms in my neck and back next week. It's a common spot that is acting up. I didn't have this with my loading dose. But, it sounds like each time is a surprise with what will happen.
Thanks,
Jan
Kelly said:
I have no idea if it's the 'mix' of the IVIG or my own health but I absolutely experience the same. Sometimes I wake up on day two full of energy and sometimes I will feel completely flu-like for the week following. If you aren't already, ask your doctor about adding in a bag of fluids to run concurrently for both days and still hydrate with gatorade or water. If you ever experience a stiff neck or high fever go to the ER asap!