Common Variable Immunodeficiency Support Group

Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.

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Marilyn-Doss-Wright 03/17/2011

I have an odd question. I anticipate moving to India sometime in 2012. My insurance company will fill a one year prescription of all medication before I leave for me to take with me or I can take a 3 month supply and get it from a local vendor. I am thinking the local vendor may be better for the IVIG and want your opinion (will ask Dr. at next visit).

I assume each country pools from within their country and therefore the IVIG would have antibodies to all the common local diseases, and I would be better protected by using the local supply. Does this sound like a reasonable assumption? Do other countries test for all the same diseases the the US test? Anyone know who to contact to get those answers? I doubt my local doctor will have the answers.

I don't think I am going to make it to the conference, so if anyone going could ask this question I would be very grateful.

Marilyn

markincleveland 03/17/2011

I'm not a medical professional, but I know that all IG sold in the US is made from plasma collected in the US. Hizentra is manufactured in Switzerland, but all the plasma is collected in the US. Different countries have different brands, Whatever you use now make or may not be available in India. I think logic would say you would be better protected by using a local product, but I don't know if India's IG is made from India plasma. I would also be concerned about traveling with a years supply of IG; ie all my eggs in one basket. I might check with India's Primary immune patient organization to see what brands are available in India.
India and to see it they have any advice.
I might also check with your drugs manufacturer to see what they say. They probably have some advice, or your physician might have to check becuase they manufacturer are limited as to what they can directly tell a patients.

Indian Patients Society for Primary Immunodeficiency
(IPSPI) Plot No. 3, Phase 1, Adarsh Vihar, Patia, C.S. Pur,
Dist. Khurda, Bhubaneswar 751031 (Orissa)
Tel/Fax: 0674-2726402 (O)
+91 98611 85656 (M)
+91 94370 47888
+91 90404 07188 (M)
rubbychawla@ipspiindia.org
rubbyipspi@rediffmail.com
www.ipspiindia.org

PrincessButtercup 03/17/2011

I know my pharmacy will only give me 1 month's supply of my Ig at a time. I don't know whether that's due to a concern that my prescription might change, or whether it's due to the stability of the drug...I assume it's more a cost issue and fear that my prescription might change and therefore cost everyone more money.

Marilyn-Doss-Wright 03/20/2011

I get a 3 month supply currently so getting that will be no problem. I have tried to contact rubby previously and she said to bring the SubQ with me because they do not have it there. I had asked about doctors in Bangalore but she gave no recommendations. I also asked if a nurse could come to the house to do the infusion but there was no reference to that in the response. I get IVIG not SubQ so maybe I need to be very explicit in my questions to Rubby.

I know there are 2 brands in India. I may try to contact them directly to have some of my questions answered.

Thanks,

markincleveland 03/20/2011

Just a thought. Marcia Boyle, the founder and president of the IDF is also on the board of IPOPI, the international association of primary immune associations, or something like that. You might give her a call and see what advice she has to offer. She is the expert and a very nice lady. Please give he my regards . . just tell her Mark from Cleveland, she'll know who.

Marilyn-Doss-Wright 03/21/2011

@ Mark

Thanks, I will look her up and try e-mailing her. I also found some speakers at a PIDD international conference who are from India and will try them also. They are in North India so it would be unrealistic to see them on a regular basis but I may consider it if no one can be located in Bangalore.

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