I had my first IVIG treatment today, I am fortunate the VA has agreed to giving me the Infusions. Has any noticed any increase in energy or had any bad side effects from the therapy? ...Donn

I'm SO glad to hear the good news, Donn! Congratulations! Just make sure you get the right dose, which is 2gr/kg/month, administered over a two-day period (usually, a 5-hour infusion process each day, which starts out very slow and then speeds up). Headaches and allergic reactions are the most likely negative side effects, and that's why they should give you Tylenol and Benadryl ahead of time, and why you may want to take Tylenol for a few days after the infusion, especially the first times, until your body gets used to the IVIG. Higher energy levels are a commonly reported and favorable side effect, especially for those of us who were debilitated by prior, frequent capillary leaks and all the attending consequences.

Hi Donn, Glad to hear that you are able to start the IVIG treatments. I have had two treatments so far and the headache has been there each time. I am given the Tylenol and Benadryl before the IVIG is administered. My last treatment I felt kind of tired and some aches as if I was coming down with a cold, but that was just the one day after. Glenn

I am given tylenol, Benadryal and IV steriods before my treatments. Without the steriods I get itchy and nervous. I do find that I have an increase in engery for 14 to 21 days a month. Rita

So far no headaches, but I seem to be depressed and experiencing some anxiety. Hopefully the enery spurts will kick in soon. ...Donn

I am getting 35gm over a 2 1/2 hour period. That sounds like a lot. ...Donn

As mentioned, the recommended dose is 2gr/kg/month of IVIG over two days, so to pick an easy number, if you were to weigh 100kg (220 pounds), you're supposed to be getting 100 grams of pure IVIG diluted (usually in a liter of saline water) the first day, and another 100 grams of IVIG the second day, over about 5 hours. So No, 35gr is well under the recommended dose (unless you weigh 77 pounds!), which may be why they're only giving it to you over a 2 1/2 hour period. A much larger dose would take a longer time period to administer. And remember that it has to be two such doses over two days. Encourage your MDs to read the literature carefully again, including the recent post here "On IVIG as the Best Therapy," and to give a call to any of the doctors listed there if they have any questions.

we have found that if taylor must be given steriods and have the ivig ran at a slightly slower rate or else he ends up with head ache and vomiting during the night after he got it

IVIG is not approved for use for CLS in Australia. Can anyone provde precedents from USA or elswhere on its approved use please.

IVIG for SCLS is not routinely approved anywhere that I know of because it is a novel and very expensive therapy, so for now its use is on a case-by-case, "off label" or exceptional basis. However, its excellent results are persuading more and more doctors, hospitals and medical insurance companies to grant the requisite approvals, both in Europe and North America. I will send you an email with all the relevant literature for you to present to your doctors, Warren.

Arulo Thanks for the info I have already used it to help my position but I fear it is going to be a long battle to get IVIG approved in Australia. Donn Do you have anything specific on VA approval to use IVIG in the US. Even a copy of the letter approving could be very helpful. As I am a 20 year vet anything may be helpful for me. Warren

I don't have a formal letter of approval. I met with a Hematologist with the VA and he got the approval. ...Donn

Donn Could you give me any name or point of contact. My case is being presented by my Dr today to my local hospital and she says this could be very helpful. I would appreciate any help you can give otherwise it looks like it might be years befoe I can get the treatment. Since it is now clear I have been having attacks for 10+ years this sort of wait could be too long. Warren

Unless you are a veteran registered with the VA, I don't think they will give you any information. ...Donn

My specialist is making a case for me with my local hospital and is looking for precedents. As I am an Australian vet of 20 years this could be very relevant. I understand you might be reluctant to release names etc but is there a division or area that could be at least cited in my application that goes in today. If I am not successful through todays application it will be at least another two years before I might get the opportunity to be treated with IVIG. If anyone else can provide me info I would appreciate it. Warren

Donn My personal email is warren.king1@defence.gov.au or wking@webone.com.au if you would prefer to use that medium. Warren

hi i hope every one is olwyes in a good health just i reterend from paris was for a visit to dr. amoura he give me a new indication after one year that i us ivig 2g/kg he recomand now to us 1g/kg its for tray i git it to time and the next 14/06 i ll going to take my 3 one i file very will, i us the docoment in italy to git ivig liki of label may be you can us it so vusit this link http://www.annals.org/content/154/7/464.short thankes yaser

I have just had IVIG approved by my hospital. I am very grateful to Arturo and everyone else who provided the information I was able to pass on to my specialist who used it to get this treatment approved. I most grateful to everyone.

This is great news, Warren! Please use your profile page to tell the story of your own struggle with SCLS (dates of episodes and first diagnosis, medications tried and results obtained, medical complications suffered, etc.), and to keep us updated of your progress (or any problems). We are still learning from one another. I myself learned about the potential benefits of IVIG in part from other members of this community (claude53 [Claude] in Switzerland and josee [Josée] in Canada), so I'm simply returning the favor bestowed on me.

I have been on IVIG since November of 2010. It took a couple of months for my body to adjust and for my Doctor to figure out the pretreatment I needed. I have been do so much better that I have start to work full time again. I have a desk job so I am not to active, but it is good to feel productive again. I still have trouble with the heat which is hard as I am an outdoor girl. I sweat a lot and drink a great deal when I am out in the heat. I can not stay out for more than a couple of hours, but that is a small price to pay for feel good the rest of the time. I hope all of those on IVIG find that it increase your quality of live. I have come a long way from wondering if I could collect social security disability pay. Best of luck to all of you.

Hi Ritz ! Glad to hear the IVIG treatment is working better for you & you are returning to FT work ! I leave Sunday (7/18) for the NIH testing. Will let everyone know how it goes ! Take care ! Dawn

Warren, that is great news! Could you please email me again with more details of how you managed this? Thanks Sarah New Zealand

I too started IVIG treatments for the first time on July 8th, 2011. I believe my doctors obtained prior approval from Medicare but will confirm that later. For more information on my history and treatment see my profile. Mahaff. Posted July 15, 2011.

That is great news too Mahaff!

Sarah I will email you soon. I have had my first treatment and I feel like a new person. No swelling at the end of a day. I did have some reactions such as headache, rash and muscle cramps but overall an excellent outcome so far.