I was diagnosed with CIDP after 3 neuro's and numerous tests that concluded with a nerve biopsy. It showed a severly demylated nerve. My insurance company denied IVIG because I never had a lumbar puncture.
My current Neuro. who diagnosed the CIDP is one of the top nerve/muscle specialists in the country (I'm told). He is VERY frustrated. He said there was absolutely no reason to do a lumbar puncture when we already had a nerve biopsy that shows demylation...that it was stupid, risky and served absolutely no purpose. He is willing to do it but feels that the insurance company will just find another reason to deny IVIG.
He thinks they would pay for IV Prednosone. However because of the high doses and long term nature of the treatment he feels the side effects I would suffer would be more serious to my over all health in the long run than the CIDP as long as it continues to progress slowly.
My husband and I are confused and don't really know which way to turn. Any comments or insight you can provide would be greatly appreciated.
Lumbar puncture... get one. Muscle biopsy is not always definitive.
RE:...CIDP as long as it continues to progress slowly... THIS IS WHEN YOU WANT TO GET TREATMENT!
Took me 15 years and many, MANY neuro test to get my insurance company/ provider (named after a German Kaiser) to diagnose and then prescribe IvIG, which is now 240 grams/month + Imuran.
So far, 26 months of high-dose IgG. If diagnosed years ago the treatment might have been only a few months, a lower IgG level needed, MUCH less expensive and my left leg would not drag behind me like Igor's (Frankenstein's assistant).
Indeed, someone at the insurance company looked at a checklist and saw that you have not had every possible test. Some companies are worse than others for denials of this type. You can appeal this decision and it's great that you have a wonderful doctor on your side.
Encourage your doctor to file an appeal explaining that the nerve biopsy has more medical value than a LP now and that the lumbar puncture would be an unnecessary "expense" and "risk" for the insurance company, not just you. List why the nerve biopsy is conclusive, costs from an LP, risk from delaying treatment, things that say MONEY or lawsuit to the insurance company. Likewise, have him write a paragraph about the anticipated side effects of steroids, making it clear that the insurance company will pay for all of your new conditions. It is hard to make the cost of IVIG seem like the better deal, but it is better that paralysis and a lifetime of medical care. Granted, most LPs are just fine, mine was, but this is a medical / legal / insurance context.
Explain again why IVIG should be a first line treatment. This article looks like a pretty good citation from the Journal of Neurology explaining some IVIG basics from 2008. He could send it to the insurance company for their records.
Finally, explain why IVIG may be the best cost. You have already said it: "However because of the high doses and long term nature of the treatment he feels the side effects I would suffer would be more serious to my over all health in the long run than the CIDP as long as it continues to progress slowly." Side effects from IVIG generally occur at or near time of treatment. You may not tolerate IVIG. It may not help you. Why not find out? You can always try the drug (IV Prednisone) that is cheaper up front, but causes long term, expensive side effects second.
Maggie had a nerve biopsy, not muscle. Why do you think she needs to show the elevated protein in the spinal fluid? I assumed this was a sural nerve biopsy. Can that still be inconclusive for CIDP?
Your correct Joy - it was a biopsy of the sural nerve. My Doctor did file an appeal, he exhausted all avenues. He said during one phone conference with the doctor from the insurance company (who was denying the IVIG) he just stopped the conversation and said "Tell me what CIDP stands for"....there was a long silence and paper shuffling. The insurance doctor didn't even know, he had to look it up.
We are trying to decide about the IV Prednisone. My doctor feels that at this point the side effects could be more damaging to me than the CIDP. I've been on IV Prednisone in my 30's numerous times for another issue, I had horrible side effects. The thought of going that route is really upsetting.
Hi, Maggie. I was required by Humana to have the lumbar punch on to get approval for IVIG. I was terrified and didn't want to do it but so grateful I did. Knocking on wood...I have no issues with them for approvals and it was easier to be tortured with it and get treatment than to wait for eternity for approval.
However, as getting a lumbar puncture may satisfy them, you could consider getting the LP. Like Harpa, I really had no further questions from my insurance company after the LP.
Have you and your doctor considered plasmapharesis instead of the IV Prednisone, since you know you are likely to have side effects with the latter? I have not had plasmapharesis, I'm just trying to explore other options.
Thanks Joy and Harpa - I think I'll talk to the insurance company myself. If your correct and the LP would satisfy them then it would be well worth it. I worked many years with doctors and I know sometimes ego gets in the way. My neuro was really angry he was being questioned about the diagnosis.
I'm a nurse who often has to fight with insurances in order to get meds, tests, and procedures approved. Whenever I'm up against a wall, I ask the insurance rep point blank: "What does this patient need to try and fail or have done first before your company will agree to allow them to have______?" They have NO choice but to answer that you have to try and fail X-Y-Z first OR have this test done before getting that test done and then I ask them to fax me their reply in writing so I can have it for the patients records "as I do sooo many prior auths and don't want to confuse this patient with another patient". If they decline to send me something in writing, I get their first name and first initial of their last name and their phone extension and repeat back to them what they have told me and tell them that I am making reference of the phone call with THEIR name in the patient's chart. If they still deny the IVIG, try ONE infusion of prednisone and then call your doctor to complain about the side effects (they can be pretty awful) and is one of the reasons I don't do prednisone. Good luck!
My experience with IVIG was the 10 treatments for me did NOTHING.Started taking prednisone and in a very short time I am in complete remission,NO side effects except for a small weight gain.Off all medication now and feel awesome.I`am 61 years old was in a walker and had CIDP pretty bad.Thats all behind me now I use my walker to hang clothes on now.
Thanks Sunshine, very helpful information and I'll definitely try it!! Sunshine said:
I'm a nurse who often has to fight with insurances in order to get meds, tests, and procedures approved. Whenever I'm up against a wall, I ask the insurance rep point blank: "What does this patient need to try and fail or have done first before your company will agree to allow them to have______?" They have NO choice but to answer that you have to try and fail X-Y-Z first OR have this test done before getting that test done and then I ask them to fax me their reply in writing so I can have it for the patients records "as I do sooo many prior auths and don't want to confuse this patient with another patient". If they decline to send me something in writing, I get their first name and first initial of their last name and their phone extension and repeat back to them what they have told me and tell them that I am making reference of the phone call with THEIR name in the patient's chart. If they still deny the IVIG, try ONE infusion of prednisone and then call your doctor to complain about the side effects (they can be pretty awful) and is one of the reasons I don't do prednisone. Good luck!
John, that is really interesting. So do you still have to take the prednisone?
john1953 said:
Hey Maggie
My experience with IVIG was the 10 treatments for me did NOTHING.Started taking prednisone and in a very short time I am in complete remission,NO side effects except for a small weight gain.Off all medication now and feel awesome.I`am 61 years old was in a walker and had CIDP pretty bad.Thats all behind me now I use my walker to hang clothes on now.
Maggie,
I’m quoting a letter from Dr Imran Kahn,
I’ve asked him if I can use PREDNISONE for the chronic pain in my feet:
For temporary time yes.
Go to a gluten free diet eat mostly fruits vegetables, organic corn, brown rice , fish game meat.
Must take Vitamin-D under tongue 5000 units daily, vitamin B-12 under tongue daily.
Turmeric one tea spoon in milk twice daily.
Nope I am off ALL medication.Stopped taking prednisone on july 3rd of this year
Maggie said:
John, that is really interesting. So do you still have to take the prednisone?
john1953 said:
Hey Maggie
My experience with IVIG was the 10 treatments for me did NOTHING.Started taking prednisone and in a very short time I am in complete remission,NO side effects except for a small weight gain.Off all medication now and feel awesome.I`am 61 years old was in a walker and had CIDP pretty bad.Thats all behind me now I use my walker to hang clothes on now.
Here are some links to exactly what some insurance companies want to see from you or your doctor. Generally, they are charts that list what is required for IVIG approval. The last document contains some great citations.
Thanks Joy! I'll start reading - I really appreciate you posting these!
Joy said:
Maggie,
Here are some links to exactly what some insurance companies want to see from you or your doctor. Generally, they are charts that list what is required for IVIG approval. The last document contains some great citations.
Actually I have someone who suggested a very similar diet with no refined sugars, and 3 TBS of coconut oil daily + 1200mg of Alpha Lipoic Acid. For months I've had horrible cramps - legs feet TOES and also hands, mostly at night....all night :-( I've been doing the above for about 3 weeks and the cramps have at last gone away, I'm also doing way better climbing stairs. So maybe its working? I haven't tried turmeric yet but have read about it, can it be powdered or does it need to be fresh root? (it's a root isn't it? or am I wrong?) Thanks so much Gert!
Gert said:
Maggie, I'm quoting a letter from Dr Imran Kahn, I've asked him if I can use PREDNISONE for the chronic pain in my feet:
For temporary time yes. Go to a gluten free diet eat mostly fruits vegetables, organic corn, brown rice , fish game meat. Must take Vitamin-D under tongue 5000 units daily, vitamin B-12 under tongue daily. Turmeric one tea spoon in milk twice daily.