HI : )  I am a little confused and am I
hoping someone out there can clarify something for me as I am getting conflicting information from my Drs here . Is there a difference between the strength of Kiovig 10 Privigen 10 and Intragram 6. The reason for my question is that when I started on IVIG  I was on Kiovig 10 and after a bit of time we got the dose right so my IVIG levels stayed above 20 .Then the hospital changed brands and I was on Privigen 10,again we played around and had my levels above 20 up until my next treatment . I reacted to the Privigen so i was then put on Intragram 6 . I had been give  90 gms every fortnight when I was on  
Kiovig and Privigen regardless of my weight .When I started IVIG I was 105 kg I am now 75 kg.When I was changed to Intragram the Drs decided to drop my dosage to 81 gms a fortnight and my levels dropped below 20 and I started retaining fluid  a few days before I was due for next treatment.As soon as I had treatment I would release the fluid but it made me unwell.So I asked if they could increase my dosage so I am above 20, they did and I was receiving 89 gms of Intragram 6 every fortnight and it worked a treat .Last treatment i was told my dosage had been dropped back to 81 because of my weight , I protested but to no avail . And guess what my levels dropped again.below 20 again and I started holding fluid .Dose the difference of % between these brands have anything to do with this.I have asked and been told that Privigen 10 and Intragram 6 work the same.Yet my body seems to need more Intragram to keep my levels above 20. Can someone please explain this to me because I have to convince the Drs that I need a higher dosage yet they are convinced that since my weight is  75 kgs I should recieve no more than 81 gms. Any input would be greatly appreciated . Cheeers Katarina

Katarina,

I am no immunologist, never mind a physician, but I think that your suspicions are correct, so I encourage you to confront your doctors or otherwise insist on seeing an immunologist, because they know more about IVIG than any other specialist.  My understanding is that Kiovig 10% and Privigen 10% are equivalent strengths of IVIG, because they both deliver 10 g of human normal immunoglobulin for every vial of 100 ml.  However, Intragam 6% is not equivalent, because it delivers 6 g of human normal immunoglobulin for every vial of 100 ml.-- namely, 40% less immunoglobulin.  Therefore, your dosage probably should be adjusted upward by 40% to compensate you for the difference.  It could be that they reduced the dose to minimize any side effects, or to see what difference it would make, or simply to save money.

Please fill out your profile page, because it is currently empty.  Tell your fellow community members when and how you were diagnosed with SCLS; what was your medical history of symptoms, episodes, treatments and etc.; for how long you have been receiving IVIG and what medications you tried with what success before that.  We need as much information as possible.

Thankyou so much for your advice.I have requested an immunoligist many times but have been denied.On monday just gone,i had treatment and have been put on Intragram 10 %as the hospital is stopping the Intragram 6%, they gave me the same amount of gms as when i was on the 6% i put it forward that now that i am on the 10% and my weight is 76kg my dosage should be re evaluated and was bluntly told that i did not know what i was talking about and to leave it up to them,so whilst having treatment i made sure the nurse treating me was going to listen.After 2 days i got to see a resident( i think ) Heamatologist he is under my actual Heamatologist ,i cannot get to see the actual specialist no matter how hard i protest.Anyway the "resident" Dr has told me it will take up to a minimum of 6 months before i can get an appointment.Thats just not good enough for me so i have contacted 2 Goverment Health Department and put in a complaint.Thankyou for being my back up it has helped me in so many ways .Cheers Katarina : )

Katarina,

How are you doing with your treatment? 

Which IVIG and dosage have the doctors instituted in the end?

Do you Take any other maintenance med whilst on the IVIG (T&T for example)?

Thank you.

Valeria

Valeria,

For your information, you can also email Katarina directly by clicking on the envelope/Message button next to her name.

Arturo