[cait24]

I started IVIG for the first time yesterday at home. It went well. It made me extremely exhausted, worse than MG exhausted. By the evening I got my smile back, which I have not been able to do for weeks. And I noticed less muscle pain. But an extreme headache, like my head in a vice came on too. Ibuprofen gave no relieve and I still have it this morning. Any recommendations. IVIG day 2 of 5 should start in 1 hour. How long before you should see effects of IVIG?

thanks
kathie

[wgreen19]

Originally Posted by cait24

I started IVIG for the first time yesterday at home. It went well. It made me extremely exhausted, worse than MG exhausted. By the evening I got my smile back, which I have not been able to do for weeks. And I noticed less muscle pain. But an extreme headache, like my head in a vice came on too. Ibuprofen gave no relieve and I still have it this morning. Any recommendations. IVIG day 2 of 5 should start in 1 hour. How long before you should see effects of IVIG?

thanks
kathie

First, you should be drinking tons of water at least two days prior to IVIG! Then, during, and after. Have they given you any Pre-meds? Then, and finally, pump pressure can also make a huge difference. Ask them if the doctor had written any recommendations down. The best, is to start the pump pressure slow, and then gradually increase it every half hour or so. Many people administering don't like the slower process, as this means it takes longer, but there's alot of importance to starting slow, and ramping up over time.

[joefnh]

Kathie I can only echo what wgreen mentioned....hydrate and keep hydrating. I had my first 5 day IVIG just 2 weeks ago now and I brought a large sports drink with me each day and as mentioned drank a bunch beforehand. Even with that though, I did have a bad enough headache such that I asked my neurologist for some pain meds to take the edge off, I'm so glad I has those meds on hand.

Like you I found this procedure exhausting, far worse than MG....and at least for me each day I was more tired than the day before. After the 5th day it took another 2 or 3 days to bounce back some. I started noticing some minor positive effects by day 4 but it took a good week to really start feeling good. I have been able to cut my Mestinon usage in half.

Be sure to ask about what troubling side effects to watch out for as they can happen a few days after you have finished. In my case I ended up with hemolysis which is the IVIG attacking my red blood cells, I noticed this caused dark urine and eventually did require a blood transfusion last Friday.

Even with the complication, I'm so glad I went through the process as I really do feel better. It's amazing how bad I have gotten and had not fully realized it until after the IVIG had made me feel so much better.

Best of wishes.....hang in there and afterwards just REST, it will take a few days to bounce back.

Take care

Joe

[4-eyes]

Call the doctor for some prescription pain meds, possibly a nausea med (as that will probably show up, too) and perhaps a request for an extra bag of fluid to be run at the end of each infusion.

It is hard to drink enough if you are having swallowing issues. Sometimes IV fluids are a good substitute.

Don't suffer in silence. Call the doctor.

AND REDUCE THE RATE OF INFUSION! Probably not more than 50 ml/hr today!!! That is the number one cause of issues!

[wgreen19]

Originally Posted by 4-eyes

Call the doctor for some prescription pain meds, possibly a nausea med (as that will probably show up, too) and perhaps a request for an extra bag of fluid to be run at the end of each infusion.

It is hard to drink enough if you are having swallowing issues. Sometimes IV fluids are a good substitute.

Don't suffer in silence. Call the doctor.

AND REDUCE THE RATE OF INFUSION! Probably not more than 50 ml/hr today!!! That is the number one cause of issues!

I found the least side effects occurred, when they started me off at 40, and gradually increased it over the day. This however, made the entire procedure take up most of the day; and thus is the problem, as some places and or staff want to hook you up and get you done without consideration to the effect.

I'm still trying to figure out the correlation between IVIG and heart attacks. I have read, somewhere, that there is some connection with the pump pressure being administered, and welcome any feed back.

[wvfox]

I had the same problems Kathy with my first time of IVIG, I didn't even finish my 5 day round. The next go around had a different doctor, Imetrex injection 6mg. just before I was hooked up, advil 800 mg, and phenegran 25 mg for nausea, it went great, not one headache through the 5 days. Good Luck, Sarah

[cait24]

Thanks everyone. I am getting lots of liquids. I have the infusion at home so that makes it easier. The first day they did 300 ml over 3 hours. They did premed me with acetominophen and benadryl. They called the doctor, I was afraid they were going to hold off on continuing. But they said I can take up to 4000 of acetominophen a day. So I am taking 975 every 6 hours. They did the drip (no Pump) over 5 hours today. Between that and the ice pack on my head I am feeling better. Last night my smile returned. For the past 3 weeks the right side of my face has been stroke-like. It now looks normal and my muscle pain is significantly less. I am very enthused over the results in just one day. My speech is less slurry and the swallowing issues are subsiding. For these kind of results, I can endure any headache.

thanks
kathie

[southblues]

How long does IVIG help? I may be trying it soon.

[4-eyes]

Generally 2-6 weeks. After the initial 5 day loading dose, a maintenance dose can be instated to maintain function. I've been using it for 12 years now, non-stop.

[pingpongman]

It really varies like everything else with this disease. Mine lasts about 6 weeks.
Mike