Insurance Coverage

There are different companies operating under the Blue Cross or Blue Shield name. I had Blue Shield of California when I was diagnosed (first with GBS, revised to CIDP), and I was very well covered, including for IvIg treatments. It depends on the particulars of your plan.

are you sure that your diagnosis was written properly on the insurance paperwork? I ran into difficulty with Anthem BCBS because a Dr had written peripheral neuropathy instead of cidp.

You always have the option of appealing their decision not to cover, each state probably has a different appeal process, where I live, the 3rd level appeal involves the state insurance board.  I have had success at that level, where the state overturned BCBS’s decision and they were required to pay.

Possibly the insurance company required a less expensive treatment be tried prior to ivig —-meaning prednisone.

They should have put a code on the denial letter that showed WHY they denied the treatment.

good luck with it, dealing with insurance companies can be stressful.

Prednisone is generally a temporary treatment, with the dosage tapering down to zero over a period of about a year. I followed that regimen with no side effects.

I hear you—I was very athletic prior to this too.  It is very stressful having to “think” about walking, something that used to just be natural.

If your Dr had medical reasons for you to NOT try prednisone–(-if this is  even why your ins. company isnt covering ivig??) then you should be able to go straight to ivig without trying it.  Are you diabetic or pre-diabetic, that might be why your dr doesn’t want to try it.

Did your insurance company state on the denial why they are denying ivig? there should be a code on the bottom of the letter that you can look to see the reason for the denial.
You stated above “after your b-12 levels came back up” were they low when you were originally tested? did you do b-12 shots?  Ive been taking sub-lingual b-12 since being diagnosed with cidp. My level wasnt below normal when i was diagnosed, but it was on the lower end of the recommended levels.  since taking the sub-lingual tabs my level has been high, over the normal levels.

If i were you i would challenge the insurance company.  I have found that if you put them on the spot, that it’s very unlikely the people sitting in on your appeal hardly have any knowledge or history dealing with cidp.

Im in the second level appeal process right now with anthem BCBS.   I had to ask 3x before they would state their experience with the disease when I requested their background so it would be on file—since the interviews are recorded.  2 0f the 3 people at my appeal did not even know what cidp was or even what the initials stood for, the one neurologist on the board had very limited knowledge/experience.   I am quite confident that i won this appeal—currently waiting for their answer.

The insurance companies count on us being uninformed, accepting their decisions and living with it, so do your research, stand up to them and put them on the spot.   Just the fact that they are requesting a nerve biopsy shows how behind they are on their knowledge of cidp.  Nerve biopys are not routinely done anymore.

Jane,

This link has the accepted standard of care for CIDP: http://pnsociety.com/Guidelines_CIDP.pdf. It should help in your appeal with your insurance.

If you still have to try prednisone, let me know. I used it, along with other treatments, to good effect and with good control of several of the side effects.

Godspeed in your appeal.
~MarkEns

Jane12,

I guess I should read all of the fora and then answer. I already sent you a reply in the CIDP forum, but let me address some of your prednisone side effect concerns here.

Administration — there are several ways to take prednisone to treat CIDP. One is a pulsed method, in which you take a huge dose once a week. There is some evidence this might be the best route for CIDP, but it is by no means conclusive. Another is every-other-day dosing. The idea here is that the adrenal glands have a chance to recover and there modulate some of the side effects. The last is the standard, once-a-day dose. When I did the pulse method, I took the dose Friday evening. Miraculously, I was able to sleep through the night. I was an especially unpleasant person on Saturday, so I kept to myself. I was more tolerable by Sunday morning. Generally, though, predisone should be taken as a single dose first thing in the morning.

The most severe side effects you can do something about medicinally:
Stomach upset — have your doctor prescribe Pepcid
Bone loss — have your doctor prescribe Fosamax or similar, along with calcium with vitamin D. Have a bone density scan done yearly
Blood sugar — have your doctor prescribe a blood glucose meter, test strips, and lancets and then check your blood sugar daily. Keep track of it so that you know if it is starting to increase significantly. If it does, get with your primary care physician to devise a treatment strategy.

The most severe side effects you can monitor:
See an ophthalmologist every six month to monitor for glaucoma and cataracts. The glaucoma might be treatable. The cataracts may form and you may therefore have to have cataract surgery.
See an dermatologist every two years to monitor for skin cancers
See your primary care physician every six months and follow his/her recommendations for other referrals. Have him/her be especially watchful for cancer and other effects from immunosuppression.

The most severe side effects others can help you with:
Weight gain — have others help you avoid fattening foods or too much food. You may feel hungry all the time. Having others help you with the cravings will limit your calories, reducing or eliminating the weight gain.
Mood swings — warn those around you that you could suffer severe mood swings. Let them know that it is not personal, that the drug you are taking makes you slightly crazy. Some people will be understanding, others won’t. Just do the best you can.

~MarkEns

Jane12,

The symptoms you experienced from IVIg are not uncommon. Most people get a headache. Many people have some sort of allergic reaction. A slower infusion rate and Benadryl and Tylenol (or their equivalents) helps to moderate the symptoms. If nausea is severe, Zofran could be prescribed.

Find out what the fastest rate you had during your last infusion. If you get IVIg again, insist that they do not infuse you at more than 2/3 the fastest rate. See if your symptoms improve. If they do, then you can try a somewhat higher rate. If not, then try a slower rate. There is a practical limit to how slow the infusion can be; the nurses have to go home eventually. If a very slow rate still leaves you with symptoms, you will have to decide if their negatives outweigh the benefits.

~MarkEns

jane

My infusion rate is 240 for ivig. I take 25 mg of benedryl and 2 tylenol prior.  I found the best way for me to avoid a headache is caffeine.  I normally drink  a 20 oz coffee daily, on the day I have ivig I drink 2 (40 oz)   really helps with avoiding a headache.  I also drink a lot of water.

I’m not sure if it’s just a coincidence or not, but i also find that I am more prone to a headache if my infusion is during my  monthly menstrual cycle.

Mark gave a good description of the prednisone.  When i tried prednisone I was on the daily dose (60 mg) every morning.  I noticed the difference on the fourth dose/day.  I did not suffer longterm health issues as I was only on it for two months.  I did have trouble sleeping, irritibility ,weight loss, increase in leg weakness.

Best of luck in whichever treatment you end up trying.