Hi all,

I was just wondering what kind of side effects you encounter after your IVIG infusion? I used to feel fine afterwards. After my past two Infusions I've felt hunger over. Have any of you experienced this? Every now and then I've gotten a migraine after my infusion. But as of lately it seems like I can expect having a migraine for up to 48 hours. Unfortunately I am not supposed to take Advil, per my cardiologist's recommendation. I can only use Tylenol, which doesn't do the trick. Remedy suggestions? I am currently receiving an IVIG dosage of 2g/kg/monthly. I recently reconnected with Dr. Druey and he suggests I taper down my dosage, ultimately to 1g/kg/monthly, since I haven't had any leaks in the past two years (since starting my treatment/being diagnosed with SCLS).

Thank you! 

Hello ! My daughter first developed SCLS when living in Frederick . She was 3years old during the first attack . She is currently on Scig and has frequent headaches . She's infused 3 times a week so it's like she has a headache constantly . She's been on this therapy for more than 7 years. Would you mind personal messaging me and letting me know what area exactly that you live in ? Just out of curiosity . I think it's tremendously weird , with how rare this condition is , that there is another person from our same city ..... 

thanks and good luck to you 

Kristy

Hello... I have struggled with side effects after treatment as well (migraines, nausea, flu-like symptoms....)  My immunologist switched my monthly IVIG to bi-weekly to see if that helped with the side effects. I think it has helped with how sick I feel right afterwards. As well, during my infusion they have started running D5W,  and that has been helping with the initial side effects as well I am finding.  Perhaps that might help you?  I was told to take reactine(cetrizine hydrochloride) when I got home from my infusion and the next morning which I do with another dose of tylenol and then keep drinking water.  

Hope this helps....

Lisa

The topic of side effects from IVIG infusions has been discussed several times before, so check out https://rareshare.org/topics/1341 and https://rareshare.org/topics/1282, for example.

For my part, I have been on IVIG 2 gr/kg every 4 weeks for over 10 years and I suffer no side effects.  I used to get some headaches a couple of days after the infusion but (a) only when I increased the speed of the infusion, which for several years now takes place at its maximum recommended speed, so I haven't increased it any more; and (b) the headaches always went away by taking Tylenol for 24 hours.

Headache is a very common side effect after immunoglobulin infusions. These headaches are due to a more or less diffuse meningeal irritation and affecting the 2 hemispheres of the brain. The best treatment is paracetamol (Tylenol)

On the other hand, migraine is an often unilateral headache, sometimes preceded by warning signs and of vascular origin by contraction / relaxation of cerebral blood vessels during certain biochemical changes. The best treatment is a drug of the « triptan » family.

Claude

Hello, 

I too suffered from debilitating migraines. However, recently my Dr. slowed down the infusion rate, added prednisone one hour before and 24 hours after my infusion and also increased the amount of fluids I receive intravenously immediately following IVIG. This new protocol has eliminated my migraines. I still suffer from headaches, fatigue and some nausea as well as hypertension for several days following the infusion but with the change in protocol I have not suffered from migraines. I also make sure to drink a lot of water the day before and during IVIG. I also find hydrating and eating a salty meal the night before helps with the headaches and eases the nurses ability to start a line. 

I receive 30 grams of gammunex C 10 % every 14-21 days followed by a bag of fluids for one hour ( I think it's dextrose and sonething else). I take extra strength Tylenol, Claritin and prednisone 30 minutes prior to infusion and prednisone 24 hours after the infusion.  In my case, Advil is much more effective than Tylenol in treating my headaches but i am not supposed to take it.  
The IVIG and one hour bag of fluids takes approximately 8 1/2 to 9 hours. 
I have been receiving IVIG at the infusion center at a major hospital in the Detroit area for 9 years. 
I was receiving 30 grams of  flebogamma 5% but they discounted it. So now I'm on gammunex C 10 %. 
I also found that switching from Benadryl to Claritin makes me less sleepy and has eliminated the hungover feeling that I was experiencing for days following the IVIG.

Wishing good health to all! 
 

I had the hungover feeling for many days after my first few treatments, and I've found that the anti-nausea bracelets work very well, and my doctor recommended magnesium for headaches (up to 800mg daily), and both have made a huge difference.  Last treatment was almost no reaction.  I put on the bracelets right before treatment, keeping on during and after for days.  I start magnesium cholate a few days before treatment and stay on for about 10 days. I am also amping up on fluids the few days before & during treatment - I hope this is helpful - it's made a world of difference for me :-)

Thank you for your responses! I will be tapering down my next infusion to 1.5g/kg. This may help with my side effects. I had my recent infusion a week ago and in talking to the nurse, and after reading your responses, I experimented with hydrating well and continuing to take Tylenol and Benadryl after each of my two infusions, and another 24 hours after my IVIG was all complete. The nurse said that some IVIG patients she's had receive pre-infusion fluid and post-infusion fluid, essentially flushing the system to help with the side effect. This is why I decided to hydrate really well. In some of your responses, taking Tylenol and an Antihistamine helps. So I decided to give that a try as well. I'm happy to share that I had no side effects this time around! My hypothesis is that what I did makes sense as to why it worked. I have had migraines as a allergic reaction. I've been getting these types of allergy triggered migraines since I was 10 years old, so most of my life. Also whether thru hydrating or the idea of flushes my system, it doesn't hurt to stay hydrated. When I think of hung over I think of dehydration from alcohol and the fact my body probably wants to clean out. Again thank you for your response!