Scared & Confused IVIG & Cost
AnonymousNovember 17, 2007 at 1:11 pm
I had GBS in January 2004 & have been left with many residuals. I am seeing
a new Neuro and have a tenative diagnosis of CIDP, I go for a Lumbar puncture in a few days to confirm the diagnosis. I had a nerve conduction test done a couple of weeks ago, the results were inconclusive and to weather my neuropathy is caused from my diabetes or CIDP.
My Dr. is discussing IVIG treatments when it is determined that I have CIDP.
I would like to know how much these treatments cost and what to expect from my insurance company.
I would also like hear from anyone who is diabetic and what if any problems this might cause to my blood sugar numbers.
The whole thing scares me, will the cure be worse than the disease?? What side effects should I expect. Will this be a huge financial burden?
I am still waiting on my Social Securtiy Disability hearing. It has been two years since we were confirmed for a hearing date. I do have a lawyer and he hopes we will be hearing no later than after the first of the year. If I choose not to have the IVIG I wonder what that will do to my disability position?
Please calm my fears.
AnonymousNovember 17, 2007 at 2:08 pm
IVIG costs about $90 a gram. It depends on your insurance as to if you are going to have a problem. We have BCBS & have been extremely lucky that they’ve paid for everything.
I’m not sure how it will affect your disability case.
Some brands of IVIG contain sucrose which may cause kidney damage. I would think as a diabetic that you would want to stay away from those brands. Just tell your neurologist you want a brand without it. One brand is Gammaguard…there are a few others that I don’t know off hand. I’m not sure if IVIG would directly affected your blood sugar levels though.
The most common side effects from IVIG are flu like symptoms. The best way to prevent them is to stay hydrated and premedicate with Tylenol or Motrin AND Benadryl. Whether you get the infusion at home, at an infusion center or at the hospital a nurse will check your blood pressure, temp & heart rate every so often to make sure that you are handling it ok. If you start to have problems they will either stop the infusion altogether or lower the speed in which you are being infused. A slower infusion rate will help ward off any side effects so you will be started out slowly & then the infusion will be ramped up.
Remember that IVIG is NOT a cure for CIDP. It is a treatment. Some people will go on into remission but that comes after MANY treatments.
I hope that helps.
AnonymousNovember 17, 2007 at 4:39 pm
Just some info you may want to know. I did not have elevated protien levels in 3 different spinal taps, but I was diagnosed with cidp via a nerve biopsy. It can be conclusive if you have elevated protein levels, but this is not necessary for the diagosis of cidp. Thats what I heard from Dr. Dyck at Mayo and my neuro Dr. Uskavitch.
I would discuss this with your doctor.
I understand the fears, and uncertainty of living with cidp. IVIG helps most of the folks that have cidp with little side effects. I do not have diabetes nor an answer for that question.
Your disability should not be affected either way. I waited a couple of years before I broke down and had treatments while my symptoms were mainly sensory and did not affect my strength. I wish I could have those years back. I know a financial future is important, but your health is too. I would trade back my disability to be able to work in a heartbeat.
Good luck in whichever you decide.
AnonymousNovember 17, 2007 at 8:05 pm
Hi Bonnie, Nice to see you again:) Your ssd won’t be affected by any treatments or refusal of treatments. Like others said, ivig is not a cure. Check with your dr about the complications of ivig on diabetics. A lp won’t confirm if you have cidp or if its just a dn that you might have. A lp is just another tool used to help dx or rule out other problems, it can be a low protein level and you might still have cidp. There is no test for cidp, its actually more of how the dr views the results and how much the dr knows about the different types of neuropathies. If you have the symptoms, you pretty much know what you have as far as cidp goes. Take Care of yourself and don’t be a stranger.
AnonymousNovember 18, 2007 at 5:51 pm
lots of good basic advice. Something to ‘web’ up and check out about your own medical plan is ‘policies+procedures+IVIG’ I bet you will find out a lot about what diagnostic tests must be passed before IVIG is used for a CIDP diagnosis. Also web up ‘Policies+procedures+CIDP’ as a cross reference.
As for costs? With my insurance plan, one has to meet what is called the ‘Catastrophic Deductible’ usually between $3,000-$5,000 a year in what you pay for stuff…Once you meet that amount, the rest should be covered -for some plans [mine included], for others tho you have to pay some sort of co-pays and they can vary widely…very widely. So, essentially you usually get ‘hit’ with the big bills right after the holidays in the new year, every year! As time goes on tho, you just automatically plan for it.
I would also suggest that you web up ‘IGLiving’, a magazine put together by IVIG manufacturers to inform folks like us about IG and all it entails. I was very surprised to learn that I am one of a very large group of folks [especially kids] who truly rely on and need this blood product. Access to their back issues on-line is free, the issues are informative and provide heaps of resources about IG makers and other resources.
Lastly, you mentioned concern about your blood sugar numbers? There are two ways to dilute IVIG IG for infusions: One is a saline mixture, another a sucrose mix. You should really read up on this stuff by checking out the different brands and then discussing this at length with your prescribing doctor. I do better with the sucrose mixes, I find the saline give me more side effects [headaches, flu-like stuff] and I’d get one really bad taste in my mouth after the first hour of infusions-it would last for days. I am borderline hyop-glycemic and on the sucrose, I have had no bad effects. But, each of us IS different. In every way, we each act, react differently to this stuff. Learn as much as you can and learn to ask questions. By the learning and the questions you can save yourself a lot of hassles later on.
Sure hope this all helps!
AnonymousNovember 18, 2007 at 7:25 pm
Glad you found this site. Do you have type 1 or 2 diabetes? I am type 1 and when I was given IVIG I was given a brand without sucrose and did not have trouble with my sugars going up. I did have other complications from it but not caused by or harmful to the diabetes. In terms of cost, I too suggest you contact your insurance company if you have insurance and ask what they cover and to tell you what you will have to pay re: co-pays. I was hit with the 20% co -pay which left an outstanding bill of $490.00 after just 5 treatments. I applied for a program through the hospital which absorbed that balance. So find out about any relief programs that may be available to you through your hospital. Is your disability hearing for permanent disability? I am glad you have an attorney for that. Good luck. I will be happy to talk to you more about any of your diabetes related concerns. You can send me a private message by clicking on to my name. Then go to the private message icon and go from there. Take care.
AnonymousNovember 19, 2007 at 2:30 pm
I want to thank you all for the wonderful information you have given me. I guess I need to get busy and do more research. Thanks for pointing me in the right directions.
Linda, I am type 2 diabetic and I am going for permanent disabilty. I am still waiting for my hearing date, it has been two years this month. My lawyer has said it should be very soon.
Thank you all for your help and support.
AnonymousNovember 20, 2007 at 6:23 am
Another thing to note…It is not unusual for diabetics to have elevated CSF protein levels in their spinal fluid…That makes it more difficult to get a diagnosis…
I have seen a few research papers indicating that diabetics could really have both CIDP and Diabetic neuropathy…IMO no one knows the true answer…
I visited MAYO in Jacksonville FL a few years back and came back home with no DX…
Most doctors will blame all of your ailments on diabetes, so it is important to get as much testing as possible to help eliminate other possibilities like GBS, CIDP, cancer, MS, etc…
IVIG is not an approved treatment for diabetic neuropathy as far as I know, so you will need evidence that CIDP/GBS exists…
AnonymousNovember 21, 2007 at 10:22 pm
My Neuro told me if they gave me the IVIG and I did not have CIDP it could be very harmful to me, no further explanation was given. I have my LP on Monday morning. A positive result will confirm how I have been feeling the last few years. but I am still not convinced on the IVIG. I certainly do not want to start anything before the Holidays. So much to do. I have cut back on my shopping. I think it is time to clear out a bunch of stuff from the many boxes of Christmas stuff I will probably never use again.
My husband has been great support and my kids are there when I need them.
Especially my Daughter. What a blessing they are to me.
Thanks for your comments they mean so much.
AnonymousNovember 22, 2007 at 8:03 pm
I have type 2 diabetes and have taken IVIG going for three years. It has not had any affect on the diabetes. I have used all three of the Gamma products and my results have been the same, excellent. I don’t entertain the idea of not taking the infusions. I’m 66 and take 1400 grams each treatment. I had Blue Cross/ Blue Shield until I reached the age of 65 and they paid the entire cost less my deductible and co-pay. At that time each treatment cost $22,000. When I had to enroll in Medicare and have the infusions at the hospital it jumped to $52,000. per treatment and to date my Medicare and BCBS supplement have taken care of all the cost. My first dia. was for diabetic neuropathy but the problems continued to increase and my Dr. later said it was CIDP. As you study the symptoms you will find that each and every one of us have different ones. I simply can’t say enough about the IVIG infusions. It makes a different person out of me and I plan on continuing them as long as I can afford to or they are available. This forum is a great place to ask your questions and many of the senior members have a lot of answers. So, good luck and please know you have a number of sisters and brothers out here who understand your posistion
AnonymousNovember 24, 2007 at 7:41 pm
I have been on IVIG for a number of years and have seen the cost skyrocket over these years. The amount you will be given is based on your weight. There are a number of brands available, but if you are a diabetic, I would confer with your Dr. about the couple that are sucrose based. If you are hoping for Medicare to foot the bill, be aware that it does not pay if given at home (at least not here in Ohio) and if given as an outpatient it will only pay about 80% of what they approve. You will need a good secondary insurance to pickup the remaining cost. They will pay for it if you are an inpatient. I was in hospital in CA this past summer and Medicare was billed $12,449 for the infusion of 36gr.
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