Hello everyone. I have not been on the rareshare website for a while. I appologize , but I have gone through several back surgeries and have been putting my main attention to that.

Today, I called my IVIG pharmecy to confirm next weeks infusion. They told me that the Gammagard I use is in shortage.

Dr, Druey gave me alternate IVIG's and am trying to get one confirmed.

Has anyone had their IVIG in shortage? I do not see it on the internet.

 

Hello clswalt,

Between April 11.2005 and October 11.2006 I used the Redimune® CSL Behring AG (140 g) which gave me terrible chemical meningitis.

On 11.11.2006 Octagam® Octapharma AG (140 g) only once because no longer available.

From December 11.2006 to February 11.2007 I used the Kiovig® Baxalta Schweiz AG (140g) which occasioned repeated thromboses of the punctured veins and headache somewhat less terrible than with the Redimune®.

The kiovig is withdrawn from the market because of side effects (thrombosis) since 2007.

Resumption of Octagam® from March 11.2007 conditioned as follows : 140 g of immunoglobulins in glucose 5% ad 4000 ml, infusion in 3 hours to avoid the thromboses of the punctured veins. Painful headaches for 3-4 days after infusion.

Change of treatment due to the unavailability of the Octgam®, switch to the Privigen® CSL Behring AG (140 g) from October 11.2010 until now.

I have to change again the treatment because it is no longer available and return to Octagam® next December 2017.

In my case, all different treatments used are effective in terms of protection against an acute leak. Best regards. Claude

 

 

Hi,

 

I always get my IVIG brand directly by the hospital in which I get the infusions. During my acute SCLS attacks I got  Octagam and Privigen. I do not know why once this and the other time the other one. As this was in different hospitals, I suppose  that I got the one, that the hospital pharmacy had at hand.

At the beginning  (first 2 months or so) in 2016 of my regular monthly IVIG infusions I got Flebogamma and Gammunex. Since then I always get Intratect. I felt absolutely no difference between the brands, and my doctors told me, that there is no difference between the substances. Besides sometimes a slight skin rash, slight headache and slight nausea there were no problems. As a prevention I get prior to the IVIG Vomex and Fenistil.

To avoid more or other negative side effects they give me my 180 g IVIG in 36 hrs. This seems to be rather slow and is quite annoying and boring, but works well. By the way, my infusions come in (18) little bottles, that contain 100 g liquid with 10% IVIG.

I live in Germany. Your country and insurance company might have an impact on the brands available.

Andreas

 

Hello Walt and welcome back!  I have emailed you a few times in the past couple of years without success, because I wanted to make sure you were okay from SCLS, and perhaps I didn't hear back because you changed your email address?  Anyway, so sorry to hear about your back problems!  Feel free to write to me directly at my old email address, or else through this new platform, which allows person-to-person, private communication (see the "Message" icon.)

To your question, you've got nothing to fear from switching IVIG brands.  There can always be a bad batch once in a million, because after all it's a plasma product and not an artificial, lab-manufactured compound, but the product is generally obtained in a similar manner with stringent quality controls no matter the brand.  I have been given Privigen, Gammagard and Gamunex-C over the years, and I've had no adjustment problems.

The reason why different health systems, hospitals and clinics use different brands is because they shop around and make their own deals with different manufacturers.  And I think the most common reason why they sometimes "run out" of a brand is probably because they are wanting to impress upon their current provider that they are willing to switch brands if they can get better pricing.  I haven't heard of any "shortage" in the USA.

Wishing you better health,  Arturo

Last week I got my infusion and could not get Gammagard  so I got Gamunex I was told they could not get it. It was in very short supply.