Started ivig 6 months ago. For 4 months I had a relatively lose dose but continued to get infections so cll specialist increase dose for #5 .I didn't feel great for the whole 4 weeks, tired many many headaches and nausea so she cut that dose down by 1/3…I had #6 on Friday and by Sunday my headache was really bad and my blood pressure rose to a dangerous level. So I drove to our small local hospital and was hooked up to iv fluids. The doc on call called the hematologist a cc and he suggested prednisone, omaprazole and benadryl. After 6+ hours I came home and rested. Monday was not too bad took as much Tylenol as was safe an even snuck in a couple Advil (as I was off the imruvica due to having a port inserted the following day). Yesterday I went to the city and had the port inserted. Backbache, shakes, and bad headache. I having been taking t3s as prescribed but by 3 this morning my head was exploding. I have never had a headache like that in my life. I have a fairly high pain threshold but I would rate that as an 8+. I did phone the cc nurse in the big it on Monday and left a detIled message for her to pass on the the Cll specialist but am assuming the message went astray. As soon as it is business hours I will phone again. We can only leave messages and they return the calls. Usually!. 5 am here now so if anyone has. Any pain reliving miracles please left me know. Pardon all the typos. I can't see straight.
Ivig and severe headache: Started ivig 6 months... - CLL Support
Ivig and severe headache
Go back to the hospital - something is seriously wrong here. I have been on IVIG for approximately 3 years - NEVER. had symptoms like you describe. Worst problem is some agitation and trouble sleeping but insomnia is ongoing. I am on low dose Imbruvica, Acyclovir abd Sulfameth SS. I am in the U.S. Administrators need to weigh in here as well. Please keep this site apprised of your status. Also, there are several different companies supplying IVIG - in addition the infusion rate has to be carefully calibrated over several hours - especially if someone is symptomatic. I am given Benedryl and 2 Tylenol 500mg tablets 1/2 hour prior to the infusion. Best wishes, MsChief
thanks MsChief. I'm going to try to connect with the Cll specialist at cancer Care. I ended up taking a couple of Advil even though I know we supposed to avoid them. But my platelets were good on Sunday and I did get some relief from them But starting to wear off. Will keep you oosted
Just a thought. Has worked for me when nothing else did and it is easy. Sit in a bent over position with your feet in a bucket or pan of not water and put an ice pack on your neck. Cannot post picture in a reply but will post for you in a new post. Hope it helps.
Where is that headache? Back of the head? Can it be from elevated blood pressure? Is it better in a standing position? Gets worse lying down? Could BP meds help with it?
Sorry to hear your problems.two suggestions might be change your supplier of IgG. Some do better on different companies product. Second I had Giant Cell arterities and the worst head aches ever. The aerteries inside my head has a lot of inflammation in them. High dose
Of prednisone over a couple months did knock it out. It did come back but I new how to deal with it. The test is called
A Sed rate and is a blood test that tells very accurately if you have giant cell arteritis. Good luck
Thanks for the info. Hopefully it is just either the increased dose I got last time or a inferior product. I will check into the test you mentioned.
Imbub,
You definitely need to be seen by a professional soon. If this is increasingly debilitating, do so before you are unable.
At minimum tell someone you know about this and have them check on you periodically, then call a nurse and discuss the condition.
It may be unrelated to IVIG and more serious. I had a condition like this a few years back which revealed a condition that required immediate medical attention. I tried to cowboy through it and ended up unconscious.
JM
My sister has cll also. She was given some medication for gout 😳 to take before she takes her cll meds. I'm not sure what Med she's on whether Ivg or ibuterib (sp). She hates it and says it makes her sicker than the actual cll Med itself. I'm not on meds yet tho maybe soon. Bruises I got are doubling in size. I did read somewhere that Claritin D helped something but can't remember what. Sorry I had a stroke five years ago and that seems to be getting worse. I take Advil allergy sinus for allergies almost every mornings. Other then that I'm really sorry I can't offer more help. 🙁
thanks for your reply jerrysgirls3... all the best to you. These are difficult times.
I have been on IVIG infusions monthly for past two and half years! 30 grams? A 20 and 10 bottles! No side effects from it, however, I started the Clinical Trial of Acalabrutnib a month ago and the headaches were very bad! I took 1 or 2 Tramadol and a Tylenol which didn’t always help? Then I have found that 2 cups of very strong coffee works like a miracle! Likely the Caffeine is the answer in my case! God Bless and Good Luck! 🙏🙏🙏
IVIG HELP
"Sailing with CLL" - a sense of humor may help....
ALC and WBC doubles in 6 months 
