looneymom Posted May 3, 2014 Report Share Posted May 3, 2014 Tyler had problems with constipation afterwards. I am going to say something to his doctor to see if there is way to solve this problem. Tyler drinks extra fluids because of his low blood pressures but I'm wondering if it was enough before this treatment. How many days do you start pushing extra fluids before treatment? How much fluids? Does this depend on body weight?Tyler told me this morning that he was back to his baseline with pain and headache levels this morning. I have added a small supplement of methyl B-12 in the morning to see if this will help with energy and fatigue levels. Looking for a good juicer to raise antixoident levels to help with inflammation. Quote Link to comment Share on other sites More sharing options...
Clb75 Posted May 4, 2014 Report Share Posted May 4, 2014 I've been getting these for a little over two years for an autoimmune disease and was just diagnosed with POTS in December. I was told to drink water to avoid headaches that can come with Ivig. I usually drink 6 tall glasses of water, straight water nothing else, throughout the day starting two days before the infusion, then sip water throughout the infusion too. I then get a bag of saline after. Once I'm home I drink two more glasses of water then another one the day after. This has worked out for me so far, but I know everyone is different. If he's having side effects, slowing the infusion rate down can also help sometimes too.Since having POTS, I've had some blood pressure issues with Ivig I didn't have before. It can temporarily lower your BP as a side effect during the infusion then typically comes back up, but in my case it started dropping really low because of the beta blocker. I'm on florinef now so it's come back up and the infusions are running smoother. I also notice when I drink straight water without gatorade or tomato juice, I feel worse throughout the day, but I don't want a post infusion headache either. It's a balancing act I suppose. Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 4, 2014 Author Report Share Posted May 4, 2014 Wow! You are right about differences in blood pressures. Tyler's blood pressures were way up during the infusion. The doctor had to lower his dosage of Midodrine while in the hospital. It is a balancing act. Tyler just had his first treatment and we are having to learn along the way. I think my son probably needed more water and I will get more into his system this next time before his treatment. Quote Link to comment Share on other sites More sharing options...
Clb75 Posted May 4, 2014 Report Share Posted May 4, 2014 If he's not getting saline after the ivig is done, you could ask for that as well. It helps to clear it out of your system and cut back on side effects. I was told Ivig is like oil going into your veins, so the saline helps to clear it but you still need to drink the water too. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted May 4, 2014 Report Share Posted May 4, 2014 My blood pressure always dropped very low during the IVIG infusions - I would take a liter of Normal Saline after the infusion to help my pressure get up enough to drive home - I also had to take the IVIG at a much lower rate than most people due to the rapid BP drops - it was annoying to stay all day to get a simple infusion but, it was necessary and worked fairly well.... Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.