I thought I would start this thread to see what peoples' experiences with the IVIG treatments were. How long after commencing IVIG infusions did it take before measurable improvements began? I note from messages that some people took approximately three months and it seems others had different time spans. It would be good to know what the average was. If you could enter your stats, it would be great:) Thanks Sarah

Hi I started noticing a difference after 3 months. However the real changes starting showing up at six month and again after a year. At six month I started back to regular activities:taking classes towards my MBA and working fulltime. At a year I am noticing that some of my phyical strenght is coming back. At my last appointment my Doctor stated that some of my internal organs are doing better. I hope this trend keeps up.

My improvement was immediate and this was not based on just feeling better or stronger than before but on a close monitoring of daily blood samples, which showed a dramatic stabilization of my hemoglobin count in the days, weeks and months after going on IVIG compared with my lab readings in the days, weeks and months before getting my first infusion of IVIG. (Since I am told that this before/after scientific evidence is unique, I'm working with my doctors to have it published.)

I am currently getting my 7th dose....as I write today my first infusion of the month is almost complete. Another 5 hours tomorrow and I will be good for a month. In regards to your question it is hard to say exactly. I had my first treatment after my second full blown attack. I had numerous self correcting leaks throughout the year after I had the first episode that almost took me out. Since I started the Privigen I have had no leaks or swelling at all. So I guess you could say the effects were immediate. I hesitate because in between attacks I was in pretty good health. Then over a few days, I would put on 5 - 10 lbs of fluid weight, drink a bunch of fluids then it would go away and I would feel better. These tended to be a few months apart, so it is hard to tell exactly when IVIG started working. My second full blown attack in July of this past year sent me to the ER and ICU but the docs, along with coaching from Dr. Greipp and Druey(and Arturo and an IVIG treatment) did a great job and I was out in 4 days.

My improvement was immediate I would say. I experienced my worst attack on Dec 8th 2010. Went into shock....organ failure began, 30 mins of CPR, then induced coma. Body swelled up so bad that I was unrecognizable by my family. Had to receive emergency fasciotomies on all 4 limbs. Recovered after 45 days in the hospital. Actually received my first IVIG during my episode in DEC. ICU doctors were in touch with Dr Greipp to understand how to treat this, he advised them to administer IVIG. Next IVIG was given in March 2011. I have received IVIG every month since. No issues at all. Every month my blood count(hemoglobin) is normal.I have not experienced any leaking/swelling. I would say that I am living a normal life style. No restrictions at all. Just a couple of days of side effects from IVIG each month.

It is interesting to see the variations that people have. I wonder why it is instant for some and not for others... Also do people have their infusions on consecutive days or with one day in between? For me it would be very helpful to have them on consecutive days as I have to travel 4 hours each way and it is very expensive to stay in the city for 2 -3 nights each month.I live in a small town.

One more question! Barney or anyone else who had a larger gap than 28 days between infusions, how were you in that gap? Worse, better, no different?

When I set my IVIG treatments up with the allergist, he didn't want to risk finding out what could happen if I didn't have the treatment every four weeks. I just had my 3rd treatment this last Monday & Tuesday & I am still awake & accomplishing house task at 9:00 at night after working an 8 hour day. Amazing. Best of luck !!!

That is great news! I am envious:) Unfortunately I am having a 7 week gap due to office closures over Christmas and New Year and suffering as a result. I am taking every drug I can think of but feel ill, have mild but consistent swelling and am very miserable. I am sure I will be fine once I restart the IVIG and will have 4 weekly ones thereafter

I had my second treatment Mon. and Tues. , in a Hospital and it went well.I would get CLS every two days, Dr. Pecker put me in Weill Cornell Medical center and, I got my first treatment. I started feeling better the next day. That was over a month ago, and I still have not had a attact. The first time all lab readings had droped so Dr. Pecker kept me in the Hospital for five more days till the Labs stabilized. This last treatment the labs were much better after and, was able to go home. Thank you Arturo for for all the help.

The longest gap I had was really only about 4 weeks and a few days but at my request as I was trying to rearrange my schedule for personal reasons. No issues. I have my treatments on consecutive days. I haven't heard anyone else having them with a day in between but am still pretty new to this.