Finished my 5th month of 6 , monthly loading doses. I do 35 gm per day for 5 consecutive days, plus solu-medrol with each infusion.
I am concerned as the last 2 months my symptoms seem to have worsened. The fatigue throughout my legs has increased, and the amount of numbness in my feet, moving upwards into my calves and thighs seems to be increasing, After the first 2 months I was feeling pretty optimistic, as some feeling had returned to the tips of my toes,which I have not felt in years. But, the last two months I have been slow to recover from my week of infusions. It takes me almost a week to recover, with intense stomach bloating, fatigue, mild fever, and overall lack of energy. Bottom line, I don't think I feel any better than I did prior to starting the infusions, and possibly worse.
I do one more week of infusions in 3 weeks, then I will see my Neuro to determine a course of action going forward. I am curious if he will order a NCS to measure any changes.
Anyone here have similar results from IVig, or am I not giving it enough time to do what it needs to do ?
I had months of ivig with no avail I had a trial here in UK which was a fast infusion 150mmlx6 in 3 hrs which was a high dose and nothing sometimes it just doesn't work just drains the life out of you
Hi I’m Kim,
I have a the theory regarding IVIG, they give u all these immune systems of all these people and they are invades. All of our own attack!!! They have war inside of us until our immune system wins. We feel like we have been in a war.
good analogy Kim. Thats how I feel after a week of IVig, like my body has been in a battle. It took me until wednesday of this week until I started rebounding from my last infusion on friday. Two more weeks, then rinse and repeat.
I have just started my IVIG loading doses, I have 4 days of IVIG for about 2 hours each day.. SO far I feel worse, the nerves are going crazy, spasms increased, and like KIM said my body feels like it's in war. Only lucky part is the over all side effects have been mild compared to what I had prepared for. Here's hoping we all see some positive effects from this "war" our body is going through. Best of luck and God bless y'all.
Glad to hear that the side effects have been minimal ,txangel. 2 days after I finish my infusion seems to be when i experience all the bad stuff. Usually only last a couple of days, then I start the bouncing back.
I woke up with a fever night before last, that lasted about a day. I thought i was coming down with something, but felt fine today. Not sure if its IVig related,it will be 2 weeks friday since I had my last infusion. Strange.
Do you pre-medicate before your infusions? I do 50mg of Bendryl before each infusion, and that wipes me out for about 12 hours. But no headache's so far, so I will not complain.
I hope the IVig proves to be effective for you.Hang in there.
My son had IVIG back in January, nearly a month on, I really don't think it has made any difference at all. A lady on FB said that her son had about 3 or 4 lots of IVIG every 6 weeks before they saw real signs that it making a difference...
Oh I spoke to soon, lol. Night of day three lead to horrible headache that nothing relieved. Said headache continued till night of day 5. Also experienced the lovely effects of, excuse my bluntness, vomiting severely. Here I am fixing to start 7 days after first infusion and so far I'm still tired, having difficulty lifting/moving my legs or using my arms. Feels like I just don't have energy to move them. I have a slight headache but man my nerves are still going crazy. But like hjhuggy said my infusion center said it could take a couple of times before I might notice a difference.As always here's hoping. God bless yall and may he keep us all fighting a good fight.
Making lemonade said:
Glad to hear that the side effects have been minimal ,txangel. 2 days after I finish my infusion seems to be when i experience all the bad stuff. Usually only last a couple of days, then I start the bouncing back.
I woke up with a fever night before last, that lasted about a day. I thought i was coming down with something, but felt fine today. Not sure if its IVig related,it will be 2 weeks friday since I had my last infusion. Strange.
Do you pre-medicate before your infusions? I do 50mg of Bendryl before each infusion, and that wipes me out for about 12 hours. But no headache's so far, so I will not complain.
I hope the IVig proves to be effective for you.Hang in there.