Hello everyone. My husband is now almost on day 3 of a migraine after receiving IVIG this past weekend. Currently, he receives IVIG during emergencies, so there's no time to prepare ahead of time. Is there anything I can do to help him get over the post-IVIG migraine? He isn't experiencing a stiff neck or anything like that, but I did notice today he had slightly sweaty/clammy skin. Currently, I'm letting him sleep it off...but I'm considering taking him back to the ER (if he'll let me...he's stubborn).

Oh, and I do have a call in to our specialist, so no worries, I am consulting with doctors. I'm just wondering if anyone else has had the IVIG migraine, how long it lasted, and how they handled it.

I'm no doctor, but I have two suggestions drawn from my own and others' experience: First, he should take Tylenol or some such medication during and after his IVIG infusions. Headaches are a common side effect, at least initially, and that's why it is standard procedure to give Tylenol to patients who are about to get IVIG, and to tell them to keep taking it afterwards every few hours, for a couple of days. Usually, the headaches go away after the first few infusions. Second, he should be getting his IVIG on a regular, monthly basis -- not in the Emergency Room or in Intensive Care. (And I know that you are working on this.) That way, he can take his Tylenol before, during and after he gets his IVIG, and his body can get used to it.

Hello Josephite, Immunoglobulins have well known&classic side effects. Haedache are real chemical inflammation of the enveloppe of the brain but they have noting to do with infectious meningitis. The best treatment is regular taking of anti-inflammatory drugs (Tylenol=paracetamol 3 x 1000 mg/day), beginning 24 hours before infusion and as long as the symptoms have disappeared. I think that corticosteroid (prednisone 20-30 mg/day) may be necessory for 2-3 days , beginning also 24 hours before infusion. Optimal hydratation is also of efficiency ( 2 liters water/day). I myself have headache for 3-6 days after each infusion... but I am still alive. Good luck to everybody. Claude

My first 3 treatments resulted in headaches, 2 very painful. One lasted two days. It seems to me, *my opinion by trial*, that the first hour and a half causes headaches if too high a rate. Since I adjusted the rates down, I have had no headaches. I usually don't take Advil before the infusion now. My infusion takes 5 hours each day. The second part, which is after the first hour and a half, is the fast rate to the end of the treatment. If this is too fast, I get a really cold arm and my BP gets really high. Since I slowed the rate, again no problem since. I have been told different by nurses. However, I know my history of IVIG and I record my rates. I also check the rates during the infusion. I set the rates, not the nurses. Some individuals think that it doesn't matter because they have things they want to do, thus hurrying the infusion. Sorry, I go at my specified rate. Remember, nurses provide IVIG infusions to other types of immune problems and our syndrome is rare. Maybe IVIG has a different effect on us than others? I think we should all record what we do at all times. At least you can check yourself and have a chance to minimize problems.

Thanks everyone for their advice and insight. We are taking regular tylenol already (he takes it anyway to relieve his pain and neuropathy). Hopefully he will feel better soon.

By the way, a good medication for pain in the nerve endings is Neurontin (Gabapentin). Developed originally to help control certain types of seizures in patients who have epilepsy, it is recommended by many doctors for those of us who have had damage to muscles and nerves due to swelling in our limbs -- and thus lingering pain, especially towards the end of the day. Talk it over with your own doctors!

Thanks Arturo. We do have him on Gabapentin...and Codeine...and Elavil. He really wishes he could take less pills, but all attempts to wean down have failed. It's too early I guess.

I take gabapentin. It helps with the discomfort I have in my calfs. It makes it easier for me to walk. I would recommend it. I can feel the different with in a few hours of forgeting a dose.

quinine helps even more with all the cramps from the SCLS . sometimes it is hard to get i get it in Canada.

Group, just had my second IVIG treatment on Thursday and Friday of last week. I experienced bad headaches on Saturday and Sunday and am still feeling it this morning(Monday). Not sure if it is improving or if its just not as bad in the mornings, as it they seemed to come on worse as the day goes on. Taking Tylenol, but I just can't seem to stay ahead of it. It took everything I had to function normally at times over the weekend. I see some mention of rates of IVIG administration? They started mine out extremely slowly for the first couple of hours but then sped it up dramatically for the last few hours? Would it be better to maybe start out slowly for the first hour, and then speed up slightly for the rest, so I still get the 5 hour treatment? I am going to discuss further with the doctor today, but any advice is appreciated. Thanks.

Your body will probably get used to IVIG in the next couple of months, and thus the headaches ought to diminish or disappear. You can try different dosages of Tylenol, or something other than Tylenol to see if it works better. They also recommend that you drink lots of fluids ahead of the infusion date (8 glasses of fluid/day). The pace of infusion you describe sounds like the usual, but you can ask your MD that they slow it down if you wish. Normally, they drip in at a rate of about 25 ml/hr in the first 15-30 minutes, then they double it to about 50 ml/hr, then 100 or so, and then a steady 200-230 ml/hr after that. You can find more information on the Internet, and in terms of the pace of infusion, see _http://www.ashp.org_ then search under IVIG pharmacy protocol.

Thanks Arturo. I did talk to the doctor and they plan to add some prednisone or something similar to the treatment next time. My headaches do seem to be diminishing over time. The doctor also said I could try some ibuprofen inbetween the Tylenol. I was not aware of the fluids ahead of time, although the nurses recommended it for the second infusion from the standpoint of finding the proper vein for the infusion. I could live with the headaches if need be, but they were pretty intense- almost to the point of knocking me off my feet. My neck hurt as well and any sudden movements, bright lights, loud noises or bending down made it considerably worse. I bumped my head slightly once and it was almost unbearable. Thanks again for the advice.

In addition to headaches (minor) and stiff necks I have also developed a rash. Has anyone else encountered this when treated with IVIg.

I did not have a rash, but I believe that is why they gave me Benadryl, as some allergic responses can occur. At the start of the treatment I received Tylenol and Benadryl. I kept going with the Tylenol, but didn't take any more Benadryl and didn't have any allergic type responses. Only the intense headaches - which is definitely improving over time - still not feeling really great yet, but definitely improving. Good luck.

I had my second IVIG treatment last week and took prednisone (10mg) the day before, the day of and the three days after which took care of the headaches. I also get benadryl one hour before the drip starts along with one tylenol. The only other side effect is that my hands peel and turn red (like a rash on my palms) but the Prednesone seems to have alleviated that as well. It goes away after a few days. Can't wait to ween myself off the Theophyline next.