I'm new to cvid but before my 2 nd ivig infusion I started to get weak. by infusion time I was ready to jump in the chair. I can't imagine having to worry about medication stuck in customs and proper handling on top of wondering if it will get there on time. I will pray that all is ok and you will get everything on time and your worries are eased.

blessings
deb

Scary.. Umm I think I would look into customs and maybe get ahold of the company you use gammaguard etc. See if you only have a window to use it etc for so long. Explain the situation tell them your worried about your quality of your IGG after it sitting so long. I can tell you (not to scare you) it can only sit so long etc.. I would check into all of that for your own health. Would be horrible to get sick from something that could make you better. Good luck.. When do you get to return back to the US?

so sorry Marilyn...just when it seems we have everything worked out..... yeah you know the rest!

hoping everything gets worked out soon and you get your magic potion!

I do ivig so I am not familiar with handling the igg how critical is the temp? if you are concerned I would call manufacturer.

hang in there... there really isn't any other choice is there? :0(

Are you a US citizen, I am guessing so if your medication is coming form the US> I would consider talking to the US Consulate or Embassy. They are really a wealth of information and help. I grew up living in Germany and they were a go to resource for many different things. Also, you might want to contact the state Department. When I traveled to Russia I was taking some traditional (Native American) medicines and wanted to make sure I didn't get flagged as doing something wrong and they provided me with assistance on who to talk about it and also helped me to get a letter from my US Senator to help me with customs.

Also, I was just talking with my patient advocate about my medication and its storage. My speciality pharmacy sends it in a styrafoam package with ice packs to keep it refrigerated. I will be traveling occasionally with my medication and have been fretting about how on earth am I going to be able to keep it refrigerated. Anyway, some of the medication can be stored at room temperature (77 degrees max). I know India is warmer but that might buy a little time if your med can do that. I use Gammagard. If you have any medication information sheets form a previous shipment you might be able to read on there as see what they say about storage.

Good luck Marilyn. I hope things work out well for you.

One more thought Marilyn, This won't help if its is stuck in custom for very long but I know form my doctors direction that I can postpone my infusion a day or two with out problem. I travel a lot and he suggested I do that to help me not have to be infusing alone in remote hotels. The drawback is that the fatigue sets in when my iggy's run out.

Hi Marilyn,
I agree with Zenaby, talk to the US customs and see if they can help. Take your documentation if you have any showing what it is and what it is for. Maybe ask your doctor for a letter.

Did they tell you what was wrong with the paper work? Or who filled out this paper work? Ask for a copy of this paper work to make sure it gets filled out properly next time.

Sorry you are having to stress out over this. Hope you get thing resoled soon..

Cheryl

Thanks everyone. It is still in customs and they claim it is being stored at 15 c so hopefully it is fine. It can be stored at 22 c for 3 months so I am a little less worried about that. However, it is hard to trust refrigerators in India.

I am about to board a plane to Beijing with my meds in India. I have nothing else I can do until the 10th when I return. As a worst case scenario right now, I have two doses of ivig which would give me 5 weeks before I would need the subq. Still frustrating.

I feel bad for my sons, 10 and 12, because I am stressed out and they are trying to help. They should not have to worry about these things.
I

Hang in there Marilyn. Atleast you have a backup plan with the IVIG drugs ; ). Patience (with no stressing) is the "test" for you at the moment. Try to enjoy your trip to Beijing.

Best wishes
Have Energy...

I definitely understand your frustration! I'm dealing with changing of a company I used for many years (due to insurance issues) and the company is not near as efficient and organized as the one I was using. I am frustrated and I can't imagine having to deal with Customs on top of it all! Hugs to you today for CALM...

Thanks all. I did receive the package but items are missing. two of 12 doses of medicine, and some supplies. The worst is one of the supplies I can not get anywhere but the USA so I am now trying to get them to send more supplies. The good news is that I opened one of the bottles and it looks like it is in good shape. The liquid is very clear.

So glad your medicine arrived!!! Hope your trip to Beijing was wonderful and you can now settle into your infusion worry free.