Hi I developed CIDP at 2 years old, I'm now 16, but I was wondering if anyone else has lived with it from a young age? I was getting better and better until I was about 14 and now my doctor thinks the IVIG is starting not to work as well, and my dose is upped constantly, I was wondering if this has happened to anyone else, or what other treatment options there is because I'm my doctors only CIDP patient so hes not sure about anything other then the CIDP.
Hi Charlotte, Im Charolette also...LOL. I am alot older than you, Ive had CIDP for 7 yrs as far as I know. I am my docs only CIDP patient also. When I lived in Ohio, I saw a doc there that had several patients with it, she tried alot of things but I had adverse reactions and had to stop. Maybe ask if your doc will try you on an immuno-suppressant drug like Cell-cept along with the IVIG or even try plasmapherisis. I hope this makes some sort of sense to you Im losing focus, Ive had a long day today...Best of luck, Charolette
I live in Australia so there are some drugs that arn't avaliable here,and not many doctors here have even heard of CIDP, I've been told there are less then 30 000 people with it here and our population is 24 million, so its hard to get help from many doctors. Plus my doctor at the moment is a pediatrician so i will need to find a new doctor.
Char68 said:
Hi Charlotte, Im Charolette also...LOL. I am alot older than you, Ive had CIDP for 7 yrs as far as I know. I am my docs only CIDP patient also. When I lived in Ohio, I saw a doc there that had several patients with it, she tried alot of things but I had adverse reactions and had to stop. Maybe ask if your doc will try you on an immuno-suppressant drug like Cell-cept along with the IVIG or even try plasmapherisis. I hope this makes some sort of sense to you Im losing focus, Ive had a long day today...Best of luck, Charolette
Hi, I live in AU as well.I agree there is not much help here as there is in USA. Try this web site it might help you.www.ingroup.org.au/ Good luck.
charlotte_1996 said:
I live in Australia so there are some drugs that arn't avaliable here,and not many doctors here have even heard of CIDP, I've been told there are less then 30 000 people with it here and our population is 24 million, so its hard to get help from many doctors. Plus my doctor at the moment is a pediatrician so i will need to find a new doctor.
Char68 said:Hi Charlotte, Im Charolette also...LOL. I am alot older than you, Ive had CIDP for 7 yrs as far as I know. I am my docs only CIDP patient also. When I lived in Ohio, I saw a doc there that had several patients with it, she tried alot of things but I had adverse reactions and had to stop. Maybe ask if your doc will try you on an immuno-suppressant drug like Cell-cept along with the IVIG or even try plasmapherisis. I hope this makes some sort of sense to you Im losing focus, Ive had a long day today...Best of luck, Charolette
Shirl3 and Charlotte, Go on Facebook and go to the page titled Living with CIDP, and like the page and friend onto the page. A lady names Bridget started this page and she is wonderful :) Theres several people on there from Australia that maybe able to give you both more info than I am able. Lots of knowledgeable people on there and they are so very supportive, I hope you find it to be as helpful as I did. ~Blessings to you both, Charolette
Thank you Charolette
GBS/CIDP International has support group for youths I think. Look online for their website and I think under support groups.