I am, and have been, in the same boat as many of you are discussing. I had GBS 14 years ago, and in February of 2015, I was diagnosed with CIDP. The only difference at this point is, shall I say I envy those of you that are being able to be treated with IVIG. My insurance has denied IVIG treatment. Of course my doctor has appealed , and every time my doctor sends them what they want, then they stall, and then ask for more stuff. That's all they seem to be good for is stalling. Within the last month I fell like I have been getting worse, and of course I am nothing but a piece of paper to the insurance company. I can only pray for the day that my treatment has been accepted in hopes to get better. Thank heavens there is a site like this, and is some situations, as many advocates as we can handle, the more the better.
The doctor’s staff has to be on top of your insurance. Call his assistant a LOT so they do your paper work. Call them so they know your name case and the last time you pee. Do not let them drop the ball me I went to see the IVIG nurse. She knew then his staff and went to them everyday to get it approved then she went to the drug company to have my co-pay waved. I did it for 18 months I did not get the results I was hoping for. My CIDP is in my hands, face, and legs, and of course my feet, Good luck and God Bless
I would contact the gbs CIDP foundation. I went to an official CIDP center. Unniversity of penn. My doctor in NJ sent me to establish a second opinion to confirm diagnosis. They said they can’t deny because evidence based standard of care for CIDP.
The FDA has approved Ivig for treatment of cidp. My doctor is great but her office staff is terrible. I had to do all of the legwork to get insurance to pay and then more work to get co-payment covered. Still have to re qualify every six months. Be the squeaky wheel and be persistent! It’s frustrating but you should be able to get treatment covered. Good luck and don’t give up.
How do I get my co pay covered. What steps do I need to take?
melaniemassey said:
The FDA has approved Ivig for treatment of cidp. My doctor is great but her office staff is terrible. I had to do all of the legwork to get insurance to pay and then more work to get co-payment covered. Still have to re qualify every six months. Be the squeaky wheel and be persistent! It’s frustrating but you should be able to get treatment covered. Good luck and don’t give up.
Most of the drug companies have a co-pay assist program. I know Gamunex does. That is the IVIG I am currently on. They gave me a prepaid Visa card every year with $2,500.00 loaded on it for my copay. This card could ONLY be used for payment on a copay. It was great. I didn't pay a dime and once my copay was met then everything on my insurance is 100% covered for the rest of the year. Find out what IVIG drug you are on and Google them. I bet you can find information out on how to contact the company about a copay assist program. Good luck!
The doctor's staff has to be on top of your insurance. Call his assistant a LOT so they do your paper work. Call them so they know your name case and the last time you pee. Do not let them drop the ball me I went to see the IVIG nurse. She knew then his staff and went to them everyday to get it approved then she went to the drug company to have my co-pay waved. I did it for 18 months I did not get the results I was hoping for. My CIDP is in my hands, face, and legs, and of course my feet, Good luck and God Bless
Hi Alan, you mentioned you have CIDP in your face? I have been told mine is trigeminal neuralgia in my face but as I have CIDP Which affects my lower back, feet, hands and arms I wonder if it is CIDP in face too. Have the Drs said it’s CIDP in your face? Do you take meds for it and how does it manifest itself in your face? Sorry for so many questions hope you font mind me asking, cheers
I understand where you're at. I was diagnosed in 2014 by a nerve biopsy. After months of battling our insurance company I was denied IVIG. The insurance company said I could be treated with steroids. My doctor left it up to me and I declined, he felt I had made a good decision based on all the negative side effects. Even if they had approved the IVIG we couldn't handle the cost of meeting our deduct, every year for the rest of my life and the co-pay was prohibitive I wrote and called everywhere (all the places mentioned in this thread so far) appealing for help. Nothing. So I try to manage the best I can and pray it doesn't progress quickly. For me dealing with the pain and fatigue is the worst - none of the commonly prescribed medications work for me (a lot of adverse reactions). So I try hard to stick to an anti-inflammatory diet, eat as "clean" as possible. Use Yoga and meditation for pain control (better than nothing). At the "informal" suggestion of a neuro. I have found a certain controversial "herb" works very well for nerve pain
Try hard to focus on things other than your health - I know that's hard, but it's good for you mentally. I still work full time and feel strongly I'm better off doing so as long as I can preform my job (I realize that isn't possible for everyone - I'm lucky in that respect). CIDP has required I make a lot of adjustments to my life - it's been difficult - but so far so good.
Your in my thoughts and I hope you get the treatment you need. Until then I hope you find peace and comfort.
Rocketsmoke - I am so sorry, I wish I could do something to help you get the treatment you needed. Have you reached out to the GBS/CIDP Foundation? They often try to step in and help advocate so you get the treatment you need. http://www.gbs-cidp.org/get-support/denied-ivig-treatments/
UPDATE: I had a second opinion appointment with a new neurologist yesterday. My condition is still being considered GBS, though an "unusual" case of it. This new neurologist is very thorough, and easy to talk to. Her feeling is that it is still GBS, not CIDP. She said while it's unusual, there was enough time between my first and second deteriorations for the second one to be a new occurrence of GBS, and for this third deterioration to be a treatment related fluctuation. She brought in another doctor to get his opinion. He is more experienced and I am so grateful that she brought him in to talk to me. He also felt that it is GBS, just an unusual case of it. They fit me in this morning to get the EMG test done. They said GBS shows up really clearly on the EMG, so that will give us some answers - though I thought GBS and CIDP showed up the same on EMG tests... I am going to ask them about that today.
They both said it was a very strange experience with it. But they are not ready to try any maintenance treatment until it comes back again… so still it will be a bit of a waiting game and hoping for the best. It's hard to think of what that will feel like. Today is also my last plasmapheresis treatment. So while last time, the results only lasted 9 days, I have to keep hoping for the best that my legs won't stop working on me again in a week and a half. I'll let you guys know. Thank you all for the support. I have now had four neurologists tell me it's not CIDP, though when I mention acute-onset they all tell me it's not a thing. Finally I got one neurologist to actually look it up, and she saw that it is INDEED a thing. She also said if I get another recurrence she will happily refer me to one of the centers. So... I guess it's just a waiting game.
I have contacted the GBS/CIDP Foundation. I have also talked to and keep in contact with the state liason where I live from GBS/CIDP. Most of the connections pertain to Medicare and or disability. There was also a 119 pg report that I found mind boggling. The insurance I have is through my employer, as I am still working full time. I have even went to the Privigen website. Scares me like crazy since it took so long to get diagnosed, and now my dexterity seems to be getting worse. I am walking with a cane, and have been since April 29, 2014, still working and living by myself, as I have no family members to assist me with some of my needs.
thanks- this helps me out as my co-pay just went to $3.5k/yr. I'll check this out.
chirpybirdy said:
Most of the drug companies have a co-pay assist program. I know Gamunex does. That is the IVIG I am currently on. They gave me a prepaid Visa card every year with $2,500.00 loaded on it for my copay. This card could ONLY be used for payment on a copay. It was great. I didn't pay a dime and once my copay was met then everything on my insurance is 100% covered for the rest of the year. Find out what IVIG drug you are on and Google them. I bet you can find information out on how to contact the company about a copay assist program. Good luck!
I have been dealing with CIDP since 2003. I also have played the waiting game with insurance company trying to get my IVIG covered and it truly is a battle. Your doctor is probably your best help in getting it approved for you, also your Pharmacy that deals with insurance company can also be a benefit. I've been denied IVIG 4 times in 13 years by the insurance comany trying to save a dollar. The person that uaually denies it has no ideal why your on the drug or what its used for. but if you give up the fight then they've won. Luckly my Neurologist has been the one that contacts the Insurance company and get it approved. One company denied it every 6 months. But when you finally get your IVIG it will help, For me it has not cured my CDIP but it helps control it. I'm now having a new drug added with hope it helps with the symptoms. Good luck and don't give up the fight.
After getting a fifth neurologist involved, I have FINALLY been diagnosed CIDP. I will be starting my infusions this week. I hope it staves off a fourth deterioration.