IVIG - OH!! My Head!!
 

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.

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

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.

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

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

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

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.

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

oh yes.. been there.. I have had aseptic meningitis three times in the past 2 years.. worst time during my loading dose (however with that headache I had a temp of almost 103, couldn't move my neck at all and just walking hurt from my tailbone up to my head - entire spine)..

I agree with what everyone else has always said - drink TONS of water.. I drink probably 10 or more regular bottles of water during an effusion, lots before and for a day after.. i get so tired of having to use the bathroom as a result, but it helps!

RATE is key - After my initial loading dose (they went up to 210ml/hr at that time - causing the worst mengintis I have had).. I couldn't go above 70 for about a year.. it took almost 9 hours to infuse.. but in result it made the IVIG more effective (get meningitis and it made me so sick, I didn't have as good of positive results from the IVIG).. I am finally up to 100..

A few weeks ago a new nurse accidently programmed the pump to 200 and it was only at 200 for 45 minutes (i was knocked out from benadryl and awoke with a KILLER headache and a fever--- it happened that fast)..

I feel bad for a few days, but notice initial swallowing and breathing improvements that night.. the real difference comes at day 4 post infusion - it's a miracle! my 2nd ivig round of infusions (3 weeks after loading dose) i felt 110% it was crazy! now good, but not nearly as good..

Mine lasts anywhere from 10-14 days before I really start feeling it wear off.. by week 3 I am having serious swallowing and breathing issues and my hands are floppy!

Good luck!! keep us updated!

I just finished day3. Two more days to go. It took a little over 5 hours. The headache is a lot better. Swallowing is improved. Muscle pains is almost completely gone.

i have no fever or side effects except the headache and extreme tiredness. Thanks for all the advice.
kathie

Kathie that's great news and thanks for the update, it's great that your having a positive response already. :)

Best of wishes as you finish out the IVIG series, thanks for sharing your experiences.

Take care Kathie


Joe

Be sure and have pain meds like Vicodin in case it gets really severe, no need to suffer! I have gotten aseptic meningitis several times from IVIG, which is not harmful but very painful. As others said, the infusion rate is key. I can't go over 60 ml EVER.

Also, take Ibuprophen and Benadryl round the clock, for up to two days after the IVIG. My neuro says Ibuprophen is shown to be more effective than Tylenol.

Sometimes people get a more severe reaction to the initial 5 day dose but do better over time with it spread out. I have been getting it two days every other week for 3 years now.