hi since i start my tratment by IVIG evey time i git a hard headache for tow days or just one day ,i start IVIG at 05/2010 every thing is ok ,right now i haven't any scls atack , thanks

I am given medication before I start the IVIG and that helps. I usually have to take medication for a couple days afterwards. I have been receiving the IVIG therapy since April of 2011 and feel so much better and have had no SCLS symptions. ...Donn

Hi I am given benadryl, tylenol (tablets) steroids and pepcid (iv) twenty minutes before treatment. My max flow rate is 600, anything higher and I still get headache. I take extra tylenol at home if needed. Hope this helps Rita

Yaser It is always great to hear from you in emails or on Rareshare Your side effect is the reason I started the topic on "IVIG User Facts" where I asked about IVIG rates of infusion. I have side effects if the rate of infusion is too fast. I can not endure any rate above 240 ml/hr. Above this rate I get headaches and chest pains. I was surprised at the number of CLS patients who can take IVIG rates 400 to 600 ml/hr. Of course, we are all different. If you take the average CLS patient at 150 pounds or 68 Kg, at 2g/Kg IVIG, you need 136 grams of IVIG over 2 days. If your max infusion rate is 240 ml/hr, it takes about 5 hours each day. This is also dependant on the brand of IVIG being 10% type which is approx.1500 ml of IVIG to infuse. You have half the volume each month because you are on 1g/Kg treatment. I assume you infuse 1 day a month for 5 hours. Have the infusion center slow the rate down for your maximum infusion rate. It takes longer, but I don't have any side effects at the lower rates. try it for one month. Also, my insurance company changed my brand of IVIG to Gammaplex which is 5% IVIG last month. This means that I now have to infuse 3000 ml of IVIG fluid each month instead of 1500 ml as before with Gammagard. Instead of 10 hours each month, I now infuse 18 hours a month because I can't endure a faster rate. I am trying to get this changed. It is rediculous to sit in a chair for 18 hours over 3 days for the insurance company to save money. But I need the IVIG to live. I have rammbled long enough, try a slower infusion rate. It should help you. I would assume that Privigen brand of IVIG is the easiest to infuse by reading entries. It seems that Privigen users can endure higher rates.

Claude Your entry is the most interesting as you have your rates at different brands of IVIG. You have gone from 24 hours of infusion each month to 8 hours of infusion. Can you explain the total time of infusion for each of your brands of IVIG. Walt

hi thankes for all of you i git 100 gr a month i start at 8 am to 13 or 13.30 my be the rison of this headeche is the time but they us a bottel that quintens 10gr so i us 10 bottels a month any way thanks for help wating for your answer washing to be alweyes helping eache ather wasing god help us yaser

Just finished my infusion of Privigen yesterday. Highest rate was at 380 one day and 345 the next. I am not sure why the minor difference. Might just be the pharmacist making adjustments based off of the 4 -5 hour time frame. They always schedule me 1 pm - 5pm, but by the time I get in, get the IV in, give me the Benadryl, Solumedrol(sp?) and Tylenol it is usually close to 2 pm. I then finish up just before 6 pm each time. I had severe headaches the first few infusions but the last couple have been much more minor. I rotate naproxen and acetaminophen for the next 2 - -4 days and can function pretty well. I think the steroids make a big difference. I am pretty tired due to the Benadryl, but the headaches have lessened. I can still feel the pressure behind my eyes, and 'lay pretty low' for a few days following. Also, before the steroids my headaches were more severe starting about 24 hours after my last treatment and lasted about two days. Now I have less severe headaches but the pressure seems to last a little longer than before the steroids. Definitely gets better after more infusions. My body may be adjusting as well.