Greeting from New Member
AnonymousOctober 17, 2008 at 2:57 am
hi to all you lovely people.;)
I am just glad for the wonderful technology we have available to browse the web and find sites like these that offer all the support and love that one can have when days are dark and friends are few.
I am from South Africa and have been diagnosed with CIDP in late 2005.There is really no support groups available and i don’t know how many people in my country are even suffering from the same condition.After 3 months of tests it was finally CIDP.I have had just about every test done and had a nerve biopsy on my ankle to prove the demyelination.We live in a country where medical aid/insurance does not recognise the condition on their prescribed minimum benefits so they don’t pay for treatment.I am fortunate to have found a nuerologist who is specialising in CIDP and has taken my case seriously.I have been on Steroids for 3 years and the Doc says no more after Nov.IVIG is extremely expensive here.R100 000 rands or +-10 000 dollars.I have relapsed about five times since and on methotraxte weekly as well.I was wondering if someone can give me costs of ivig and places and contacts for people abroad to get in your country
I am taking it a day at a time and wish for the day i can walk and run and jump like i used to.Love you ALL:p :p
AnonymousOctober 17, 2008 at 4:14 am
Glad you found the forum! I’ve spent some time in Southern Africa but I confess I never quite made it to South Africa. 🙁 In regards to your question about IVIg… we recently had a discussion on the CIDP forum (below the main forum) that talked about different brands of IVIg, the cost etc. Here is the link to the thread:
My IVIg costs about $1000/g and is covered by insurance but you will find that is not typical, most people have to pay some or all of their IVIg treatment, if they can get it at all. Are you looking to come here for treatment or get your IVIg shipped from here? On the thread I listed above there is a link to a chart listing different brands and their manufacturers. I have no idea if they can ship that far away, mine is liquid and has to be shipped in a cooler with ice packs. They do make a powdered version of IVIg that is reconstituted before treatment -that might be an option for you. Your best bet is to contact the manufacturers about shipping it to you and the cost, some manufacturers have programs that help out financially too. But I’d be surprised if IVIg is actually cheaper here. $10,000 is 10g which is not even a third of my treatment.
If you are looking to come here for treatment that is an entirely different story… if that’s the case post again and I’m sure we will all be willing to provide you with neuro numbers and locations. 🙂
Take care… I miss Africa – say howdy to the animals for me.
AnonymousOctober 17, 2008 at 9:14 am
i just wanted to wish you the best of luck with your health and your treatment. sorry, i have no wisdom to share with you about ivig, but thought you might appreciate knowing that we all truly care:D
sounds like you have met a great member (above) who has a wealth of knowledge to share with you! thats awesome! the people here are wonderful and i imagine can help you with just about any question you have.
October 17, 2008 at 9:39 am
Not sure if this is doable, but worth giving it a try. E-mail Baxter, the maker of Gammaguard, maybe they can assist you in some way. I do know that a doctors office can purchase it directly, I believe even I can with a prescription. The problem is finding a nurse to administer it. In the US, the nursing agencies make the money on the drug, not the nursing care itself. LAst year I was looking into saving on my son’s lifetime insurance benefit. I called Baxter and they saud it was $68 a gram (price fluctuates, could be double now?) but there was no agency willing to come and just do nursing visits. IF…. you were able to get the drug from Baxter, would your docs office be willing to do the infusion in his office? If ivig is not an option, does your benefit system allow for cell cept or imuron or PP? Maybe Baxter even has some sort of program to assist in other countries. Good luck to you and my prayers are with you. BTW, there is a liason that goes by the member name Ali, try to private message her. She has gbs, not cidp, but I believe she is from South Africa and acquired gbs as a child while living there. Maybe she could have some insight.
Dawn Kevies mom
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