Hi All

I certainly do not want to cause any alarm but I am interested to know if anyone is aware of any impact on IVIG availability because of the coronavirus. I am not but I would like to know if anyone else has any information.

I did a search on the Internet and didn't find anything about a shortage of IVIG. 

On the supply side, I saw that the Plasma Protein Therapeutics Association (PPTA), an international organization with offices in Asia, Europe and the USA, had issued a statement (on February 17, 2020, as updated) stating that the coronavirus is not a concern for the safety of plasma protein therapies, including IVIG, manufactured by PPTA member companies, in large measure because "donor screening procedures are in place to prevent individuals from donating plasma who show typical disease symptoms (raised temperature/ fever, cough, difficulty breathing) of a coronavirus infection, including COVID-19.  The SARS-CoV-2 is a large sized virus (approximately 120 nm in diameter). The relatively large size and lipid envelope makes it highly susceptible to steps with virus inactivation and removal capacity used during the manufacturing processes, such as solvent-detergent (S/D), low pH incubation, caprylate-, pasteurization- or dry-heat treatments, nanofiltration or fractionation processes and others. The effectiveness of these processes has been demonstrated on other lipid-enveloped model viruses which are quite similar to 2019-nCoV, e.g. human coronavirus 229E and OC43, SARS-CoV, and porcine coronavirus TGEV" see https://www.pptaglobal.org/media-and-information/ppta-statements/1055-2019-novel-coronavirus-2019-ncov-and-plasma-protein-therapies

On the demand side, however, I see that there is a recent (February 24) WHO report on the virus and it makes mention, on page 37, that in the clinical management of severe and critically ill coronavirus patients, the effectiveness of additional investigational treatment options, including IVIG, is an option that physicians may want to try, see https://www.who.int/docs/default-source/coronaviruse/who-china-joint-mission-on-covid-19-final-report.pdf  Obviously, this is a potential concern for the rest of us users.

My concern is the impact on production . The clinic I receive treatment at had a shortage before covid. They also had a shortage of regular iv fluid due to  storms in the production area. I hopes we don’t face problems. I kind of feel there are so few of us with Scls that very few people know about our group or for that matter care.

Our son has been told that Privigen(IVIG), commercialized by CSL Behring (Germany) is not available and they are not going to produce it until next fall. This may or may not be because of the Covi19 pandemic.

One question is if this is only so in Europe or is it also so in the rest of the planet?

Another is that our son ended up with Privigen after trying other brands of IVIG beause it causes the least secondary effects, especially headaches. Has anyone out there had a similar experience? Or recomendations for another brand of IVIG that leaves less afternath?

Thank you ahead of time for any feed-back.

Hello Saxamonde,
I tried several different IVIG treatments to find out which one caused the least headache in my case. 
Currently I am on Privigen® (available in Switzerland) 2 g / kg / month.
Kiovig® and Octagam® are other alternatives, but cause me thrombophlebitis at the puncture sites. 
The Redimune® caused me intense headaches.
In my case, all the different preparations protected me from another acute leak.Consult your doctor to find the best treatment available for your son in Spain.

With my best wishes. Claude Pfefferlé 

Thanks, Claude.

Saxamonde...I take Gamunex 10%. When I was on Privagen and Carimune I had horrible migraine. Gamunex does not cause this problem.  

The pharmacist at my hospital keeps me in the loop about the ivig levels and shortages.  He did tell me that there is a shortage going to happen again early in the year much like the one that happen I believe 2 yrs ago. There are many patients at my center on ivig for different things. I being the only CLS pt though. Due to the shortage expected they are not taking any new patients as they want to make sure they can provide meds for the current patients they have. 

Hello all,

I just received a letter from my pharmacy stating that Privigen will no longer be considered a preferred medication by my insurance and that I will need to change my prescription to Gammagard, Gammagard S-D, or Gamunex-C. I have been on Privigen for 8 years and am reluctant to make a change. Does anyone know if these other brands are dosed the same as Privigen, 2g per Kg of weight? Does anyone have experience with any of these other brands?  I have been given Gammagard in the hospital and have had a rash reaction and horrible headache that lasted for days. This could have been due to the amount infused at one time though. Does Dr. Druey have information on the efficacy of one drug over the other, or do they all work the same?  Is anyone else having to change their medication? Thank you for any information. 

Cristina

As far as I know and for my own case, all the different IVIG preparations are equally effective in preventing an acute leak. The doses of IVIG are also the same (in my case: 2g/kg/month).      Claude Pfefferlé

Grandcburns,

I was on Privagen and about 3 yrs ago my hospital switched to Gamunex. I have never felt better. I used to get horrible migraines from Privegen. I no longer get suffer from those. While I am still quite tired after treatment.  I am no where as tired as I was.

I was also on Privigen and experienced severe headaches and tiredness.  My infusion center switched to Gammagard and the side effects all but disappeared.  I occaisonaly get a mild headache.

Hi, I have Gamunex also and don't have any problems as long as I have steroids as a pre-med. I've had flebogamma in the past and that was fine also. Best wishes, Caroline. 

Thank you all for responding. This helps. Happy Thanksgiving to everyone!

Cristina

I agree with gandcburns:  Thank you everyone for responding. It does help and Happy Thanksgiving to those who live in the States. Here we had our local fiesta last week: San Román, a harvest feast, just like Thanksgiving.but without indians..

Hi All. Thanks for your inputs. We find ourselves in Australia in  a very fortunate position as we head into Christmas. We basically have zero commuunity transmission with only quarantine cases of Covid 19 from people returning/arriving in Australia. These are numbered in the 2's and 3's a day

In advance of an effective and available vaccine it feels as safe as it can with this virus. My thoughts and best wishes to all in our communnity as we head into Christmas and the prospect of a vaccine in the near future.

Hi Cristina, my husband is getting Gamunex C and takes benadryl with it, has little side effects. He actually often goes to work for a few hours after 5 hours of infusion, though I wish he would just rest on those days! HVAC contractor, not a desk job by any means.--Rebekah

Hi all,

Flebbogamma is my brand, and has been for 4 years, fortnightly.       Availability has required a tentative 10% reduction in dose of late, but things are going well.

I wish you all well over the festive season.

John