new cidp member

Chen, I apologize that I can’t answer any of your questions (I’m being treated with Plasma Exchange alone).

But welcome to the family. I am glad you decided to jump into the water with us.

Gary

Hi Chen,
Glad you found somewhere to go. About the denial, that is typical, I sometimes am still in denial about my 11y/o son. The reality is that I know, the denial is that I wish, so instead I hope. Regarding the gammunex and FDA aproval. I think that gammunex must have been the one to put up the $ to get approved and now they can advertise themselves that way. I have noticed adds specifically mentioning their FDA approval. We use gammaguard. For the most part, they are all the same, with the exception of those that have sugars in them. the ones with sugars are the ones that can cause kidney issues as well as be dangerous for diabetics. The rate of infusion or flo rate also can have something to do with renal failure. The ivig products that do not have sugars differ mostly by the types of detergents used in them to process them. Gammunex sometimes is difficult to attain, because of it’s popularity I assume or perhaps they just produce less than say gammaguard to meet that supply demand=$? Who knows. Until recently (gammunex FDA approval) all ivig was considered as an off label use to treat cidp. Maybe the benefit will be for those who have difficulty in the insurance paying because it is an off label use, but now gammunex is FDA approved. Just my theory, who knows, could be way off. I do know for sure that all ivig is pretty similar unless it is sugar based.

You mentioned a 6 month time frame as a number. Does this mean you are getting it every six months, or once a month for six months? how much are you recieveing? The answers to these questions could be part of the answer to your not seeing a response to the ivig. Glad to see you asking questions. this site was a Godsend to me when we were first dx. You can learn so much through others mistakes. We made plenty. The biggest things to remember about this disease in my opinion, is that everyone is different, what works for one may not for another, every day is different and treatment plans are made by trial and error, hard work and acurate notetaking of symptom changes. Good luck to you. If you want to get in contact with anyone specifically, go to the members list spot on the top bar, locate that persons name and click on the private message or e-mail and you can contact them privateley. To check a response, go to the top right hand corner under your name and you will see private messages. Click on that and you can open your message. Best wishes to you in starting this journey.
Dawn Kevies mom

Hi Chen,
Glad you found somewhere to go. About the denial, that is typical, I sometimes am still in denial about my 11y/o son. The reality is that I know, the denial is that I wish, so instead I hope. Regarding the gammunex and FDA aproval. I think that gammunex must have been the one to put up the $ to get approved and now they can advertise themselves that way. I have noticed adds specifically mentioning their FDA approval. We use gammaguard. For the most part, they are all the same, with the exception of those that have sugars in them. the ones with sugars are the ones that can cause kidney issues as well as be dangerous for diabetics. The rate of infusion or flo rate also can have something to do with renal failure. The ivig products that do not have sugars differ mostly by the types of detergents used in them to process them. Gammunex sometimes is difficult to attain, because of it’s popularity I assume or perhaps they just produce less than say gammaguard to meet that supply demand=$? Who knows. Until recently (gammunex FDA approval) all ivig was considered as an off label use to treat cidp. Maybe the benefit will be for those who have difficulty in the insurance paying because it is an off label use, but now gammunex is FDA approved. Just my theory, who knows, could be way off. I do know for sure that all ivig is pretty similar unless it is sugar based.

You mentioned a 6 month time frame as a number. Does this mean you are getting it every six months, or once a month for six months? how much are you recieveing? The answers to these questions could be part of the answer to your not seeing a response to the ivig. Glad to see you asking questions. this site was a Godsend to me when we were first dx. You can learn so much through others mistakes. We made plenty. The biggest things to remember about this disease in my opinion, is that everyone is different, what works for one may not for another, every day is different and treatment plans are made by trial and error, hard work and acurate notetaking of symptom changes. Good luck to you. If you want to get in contact with anyone specifically, go to the members list spot on the top bar, locate that persons name and click on the private message or e-mail and you can contact them privateley. To check a response, go to the top right hand corner under your name and you will see private messages. Click on that and you can open your message. Best wishes to you in starting this journey.
Dawn Kevies mom

It sounds like you had a load, 150g total over 5 days. that is great, most docs don’t always do that. Why did you stop in June? Did you see a difference during the treatment sequence? Have you declined since you stopped? If you have declined, it would be proof that the treatments are needed!

Good luck!
Dawn Kevies mom

Glad treatments are approaching! If you do see improvement from them again, will that be testament that they help? Or will you have to go through the same procedure for re-approval every six months? In any event, I am happy you will be getting them again soon!!
Dawn Kevies mom

Hi Chen! It’s a pleasure to meet you in here and so glad you decided to jump in the boat and go sailing with us all! Great site with very friendly people. Hope your treatment helps you get well soon! Not easy dealing with this nasty stuff! Ni IVIG’s yet for me but hope they can do it soon! I have been on a long waiting list and see my new doctor in November! Yippee! 😀

Not really sure what they provide. I know I just found the Chapter in Isreal and the address is: Hadassah University Hospital, Ein Karem, Jerusalam, 91120, Isreal 972-2-6776941
Contact person would be ObdedAbramsky, MD. PHD
This chapter might be able to give you those answers. Hope this helps!

Hi Chen,
Welcome to our wonderful family..Sorry to hear you have this illness but at least you have found all of us. Visit here as much as possible because you will gain so much information. Good luck and take care

Hi Chen, welcome to the family. Looks like you are getting some very good advise. Please feel free to ask any question. Someone should be able to help.

Hi, Chen;

I didn’t get better with IVIG alone–I felt a tiny bit of improvement, but would start to demyelinate as soon as treatments were stopped, Same with plasmapheresis. It was when I took pred, 5 courses of plasma exchange followed by 5 days of IVIG that I improved. I’ve relapsed several times since my first diagnosis over ten years ago, but i have long remission periods while on low-dose prednisone.

good luck!

marie