After being told by an EXPERT at Barnes in St. Louis that I didnt have cidp, I went to Vanderbilt 2 days ago. Took me 6 months to get in, but they said they were 100% sure it was cidp. Does any one know how to get assistance for my $2000.00 a month copay? He also is starting me on inruam. Any tips on starting that? Thanks for all your help and replys. Bill.
Two suggestions,Bill.
First, whatever drugs you’re on, go to the manufacturer’s website.
See if they offer a copay assistance program. Many do.
Secondly, there is a wonderful charitable organisation (501c4) that offers assistance. You apply online and get an answer as to whether you qualify or not. You’ll need your household income figures and specifics on your meds, including prices/copays.
Good luck!
Oops Forgot to give you their name…
PATIENT ACCESS NETWORK
Bill~find out who the drug manufacturer is that makes the specific type of IVIG you'll be getting and sign up with their patient assistant program. It will require a little bit of paperwork from your doctor/nurse, but a lot of drug manufacturers DO have these type programs. It usually requires a W-2 to prove your income to meet the criteria, but if it saves you $24,000 per year, it's worth trying. I was referred to a Dr. Pestronk at Wash U. in STL, but he was booked so far out that I settled for a colleague of his, Dr. Sommerville and my appt. with him is Feb 25. If you don't mind me asking, who did you see at Barnes and did they give you any kind of diagnosis at all?
I saw Dr. Buccelli. He told me he didn't know what kind of neuropathy I had, but my diagnosis from my local neurologist of cidp was incorrect. I got an apt with Vanderbilt 6 months later, they reviewed my records, and confirmed cidp. Dr. said he was 100% confident with his diagnosis. I have tried the drug co with copay help with no success. Thanks for your help. Bill.
Sunshine said:
Bill~find out who the drug manufacturer is that makes the specific type of IVIG you'll be getting and sign up with their patient assistant program. It will require a little bit of paperwork from your doctor/nurse, but a lot of drug manufacturers DO have these type programs. It usually requires a W-2 to prove your income to meet the criteria, but if it saves you $24,000 per year, it's worth trying. I was referred to a Dr. Pestronk at Wash U. in STL, but he was booked so far out that I settled for a colleague of his, Dr. Sommerville and my appt. with him is Feb 25. If you don't mind me asking, who did you see at Barnes and did they give you any kind of diagnosis at all?
Thanks for the info. I will check into that. Bill
Jeff said:
Two suggestions,Bill.
First, whatever drugs you're on, go to the manufacturer's website.
See if they offer a copay assistance program. Many do.
Secondly, there is a wonderful charitable organisation (501c4) that offers assistance. You apply online and get an answer as to whether you qualify or not. You'll need your household income figures and specifics on your meds, including prices/copays.
Good luck!
Appreciate I are all this information! Not happy with copay!
Where's Vanderbilt at and how many of hours drive is is from STL?
Bill Cownie said:
I saw Dr. Buccelli. He told me he didn't know what kind of neuropathy I had, but my diagnosis from my local neurologist of cidp was incorrect. I got an apt with Vanderbilt 6 months later, they reviewed my records, and confirmed cidp. Dr. said he was 100% confident with his diagnosis. I have tried the drug co with copay help with no success. Thanks for your help. Bill.
Sunshine said:Bill~find out who the drug manufacturer is that makes the specific type of IVIG you'll be getting and sign up with their patient assistant program. It will require a little bit of paperwork from your doctor/nurse, but a lot of drug manufacturers DO have these type programs. It usually requires a W-2 to prove your income to meet the criteria, but if it saves you $24,000 per year, it's worth trying. I was referred to a Dr. Pestronk at Wash U. in STL, but he was booked so far out that I settled for a colleague of his, Dr. Sommerville and my appt. with him is Feb 25. If you don't mind me asking, who did you see at Barnes and did they give you any kind of diagnosis at all?
hi all
Frustration continues. After 2 LP's, numerous ENG's, a Rheumotologist and still just rule outs but no confirmation of what i have. I was advised that a Positive Protein in the CSF was the marker for CIDP. the first LP showed positive protein, and for 2 years i did the IVIG every 3 weeks. seemed to help at first and then not so much. Got a second LP and now no Postive protein. First Dr. was a cluster.
So the thought is now to go to St Louis, but now i see that there is still a difference in opinion between St Louis and Vanderbilt.
Please advise what they used to confirm the CIDP. the only thing confirmed so far is demylination and neuropathey below the knees
since everything so far is negative, test wise, i am curious what vanderbilt saw that St Louis didnt for the CIDP confirmation
Thx
I've only been in this world since November, so I'm certainly no expert. But my understanding is that a CIDP diagnosis comes from:
- A nerve conduction study (I did not have the muscle/EMG one) which shows slowed conduction
- Obviously the presence of clinical symptoms (parasthesia, numbness, absent deep reflexes)
- And either elevated proteins in the CSF, or signs of demylenation in a nerve biopsy
Continued progression if untreated past 8 weeks of initial onset is also something that is used to help diagnose.
From what I've heard on this site, it can take a lot of incorrect diagnoses before CIDP is correctly diagnosed. But also, CIDP may be diagnosed in people that are suffering from something else.
CIDP has several subtypes. I wonder if one of those matches your symptoms more closely.
mdolich,
Are you retired from the military? I had 16yrs between active and reserves and was medically discharged from reserves when I was first diagnosed with CIDP back in 2006. At that time was told i could receive no medical benefits thru VA. I'm on the every 3 week IVIG treatments & solu-medrol but with my insurance my copay is $80 per treatment but if I could get it thru VA, every little bit helps!
mdolich said:
I really can't add anything more then what has been said.
Are you a Veteran?? The VA pays for all my medical, which I'm very thankful for. If you are a veteran, then check with your local VA hospital to see if your eligible for your treatments, and other medical needs.
I have no out of pocket expenses. They pay 100% for my infusions (every three weeks), and all my pain meds, etc...
Good Luck, "Stay Strong and keep a Positive Attitude"
Bill, you may also ask your IVIG provider if they have an assistance program. You'll still have to qualify, but it's pretty simple to apply.
Good luck to you!
Lauren
If you call the drug company, they may be able to refer you to an organization that assists with co-pays. Or the drug company itself may have programs to help you.
Can’t help with the copay info but my Dx of CIDP was confirmed by Dr. Donofrio at Vanderbilt after my neuro at UT made the Dx. Dr Donofrio may be biased in the direction of CIDP b/c he is chief of the research division that Dx and treats MS and CIDP.
can you be more specific as to the tests that they ran at both places to rule in or rule out theCIDP? I have had 2 Lumbar punctures, numerous EMG's, several MRI's, lost of blood work, as well as lots of genetic testing. so far i am still sick, but dont have a clear diagnosis of what is wrong. also saw a RA guy
Geepster said:
Can't help with the copay info but my Dx of CIDP was confirmed by Dr. Donofrio at Vanderbilt after my neuro at UT made the Dx. Dr Donofrio may be biased in the direction of CIDP b/c he is chief of the research division that Dx and treats MS and CIDP.
My work-up included lots of exams by lots of Drs., EMGs, NCTs, lumbar punctures, protein electrophoresis, genetic studies, tons of lab, various immunoglobin analyses, manual muscle testing, but no nerve biopsies.
If your insurance will cover 2nd opinions, get up to Mayo in Minnesota. They know how to diagnose and treat CIDP. Reran all the tests I’d had in Chicago and then some, including a nerve biopsy.When you agree to a nerve biopsy, be aware that you REALLY want a neurosurgeon you trust. They have to snip a section of nerve that will never come back. I had a seural nerve biopsy done in Chicago and the outside of that ankle has no more sensation. Small area-no big deal, but to really see what’s going on, Mayo wanted to go into my buttock and take a piece off the big sciatic bundle. I had a guy that knew his stuff and 2 years later, the only effect we can find is when my neuro tests reflexes. Long story longer, they biopsy was successful and showed it was definitely CIDP.
Highly recommend Mayo!
much appreiated. thank you for the feedback. i guess that i am on track, just beed to get there
Jeff said:
If your insurance will cover 2nd opinions, get up to Mayo in Minnesota. They know how to diagnose and treat CIDP. Reran all the tests I'd had in Chicago and then some, including a nerve biopsy.When you agree to a nerve biopsy, be aware that you REALLY want a neurosurgeon you trust. They have to snip a section of nerve that will never come back. I had a seural nerve biopsy done in Chicago and the outside of that ankle has no more sensation. Small area-no big deal, but to really see what's going on, Mayo wanted to go into my buttock and take a piece off the big sciatic bundle. I had a guy that knew his stuff and 2 years later, the only effect we can find is when my neuro tests reflexes. Long story longer, they biopsy was successful and showed it was definitely CIDP.
Highly recommend Mayo!
Surprisingly enough, they diagnosed me with St. Louis' test results. Vanderbilt said every test result from St. Louis showed 100% CIDP. Be careful.
Jon said:
hi all
Frustration continues. After 2 LP's, numerous ENG's, a Rheumotologist and still just rule outs but no confirmation of what i have. I was advised that a Positive Protein in the CSF was the marker for CIDP. the first LP showed positive protein, and for 2 years i did the IVIG every 3 weeks. seemed to help at first and then not so much. Got a second LP and now no Postive protein. First Dr. was a cluster.
So the thought is now to go to St Louis, but now i see that there is still a difference in opinion between St Louis and Vanderbilt.
Please advise what they used to confirm the CIDP. the only thing confirmed so far is demylination and neuropathey below the knees
since everything so far is negative, test wise, i am curious what vanderbilt saw that St Louis didnt for the CIDP confirmation
Thx
My Neurologist just prescribed (Azathioprine) Imuran to replace Prednisone eventually. It comes in tablet form and I pay $2.50 per month for 30 tablets. It can have some nasty side effects. I take my first one tonight. I will keep you posted on any problems I may have with it. I hope you will update any side effects you may have.