AnonymousFebruary 13, 2013 at 11:55 pm
I was recently diagnosed with CIDP and had one IVIG treatment. BCBS has denied coverage of the IVIG. Has anyone else had a problem with BCBS not covering IVIG and if so, what did you do? I am concerned about this as a treatment option if insurance won’t help pay for it.
February 14, 2013 at 2:12 am
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.
February 14, 2013 at 4:14 am
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.
AnonymousFebruary 14, 2013 at 2:46 pm
Thanks for all the good information. We are in the process of trying to appeal their decision. And I agree, dealing with insurance is stressful. I hope they will approve it so I have that as a treatment option. My neurologist recommended IVIG as the preferred treatment and I am hesitant about prednisone due to the side effects.
February 14, 2013 at 10:15 pm
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.
AnonymousFebruary 14, 2013 at 11:06 pm
That is reassuring about the prednisone. All this is pretty new to me and I have a lot of questions. I hadn’t felt great for a period of time before I was diagnosed, but chalked it up to other factors. When I went for a physical in July 2012, I mentioned some numbness in my fingertips which the doctor thought might be low b12. However, after my b12 levels came back up, my symptoms got worse (weakness, unsteadiness when walking) and I was referred to a neurologist. It took until the end of the 2012 to complete the nerve/muscle study, lumbar puncture, and MRI, and then the diagnosis of CIDP, followed by the IVIG just before Christmas. I improved quite a bit after the IVIG treatment and at the same time had reduced some stress, and took a leave from work; but I still wasn’t back to normal. Over the next month I did pretty well, but have had some increased weakness and unsteadiness again over these past few weeks. The doctor seemed concerned about the effects of prednisone on blood pressure and possible weight gain, etc., and with the continuing battle with the insurance company over covering the IVIG, I may not have that as an option. I don’t want to wait too long to start a treatment, but I keep holding out hoping things will get better or that I will have the option to try the IVIG again. I know things could be worse and I am grateful for what I am able to do and for my many blessings, but I feel sort of frustrated at times and just want to feel like myself again. I’ve always been athletic and it’s hard now to have to think about walking and keeping my balance and just not having my body respond as it should. I guess I’d like to find some hopeful and helpful information as I move forward with this.
February 15, 2013 at 12:29 am
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.
AnonymousFebruary 15, 2013 at 3:48 am
To answer your questions, yes, I believe my neurologist felt that the ivig treatments were safer and more effective and were a better course of treatment for me than prednisone, due to the possible side effects. No, I an not diabetic or pre-diabetic. Yes, the insurance company detailed why they denied the claim – basically they wanted a nerve biopsy “proving” demyelination and to have tried and failed at prednisone.
During my regular physical when I mentioned numbness in my fingertips, the doctor did a blood test to see if my b12 levels were low. They were at the bottom of the normal range and she suggested b12 injections. I asked if I could try b12 vitamins by mouth and she agreed. I took them for a couple of months and my levels went up considerably, to above normal levels, however my symptoms progressed and I had become weaker. That’s when she referred me to the neurologist. Since then, I continue to take b12.
February 15, 2013 at 10:46 pm
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.
AnonymousFebruary 16, 2013 at 3:12 am
Thank you for the good information. We are in the process of appealing now. I’m glad you mentioned that about the nerve biopsy. From what I’d read, that was my understanding, too, that they are not routinely done, so I was surprised the insurance company required that.
February 17, 2013 at 5:41 am
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.
AnonymousFebruary 17, 2013 at 4:00 pm
Thank you for the information. It’s great to have this organization as a support and resource. I anticipate starting prednisone within the next week or so, as my symptoms are worsening and I haven’t heard anything positive yet on the possibility of ivig. If you have suggestions about ways to minimize the possible side effects of prednisone, I’d be interested. Thank you all.
AnonymousFebruary 17, 2013 at 4:30 pm
Speaking of side effects, I have one other question. Being recently diagnosed, I’ve only had the one ivig treatment (in December). I had a reaction during the infusion (chills, shaking, joint pain – particularly my neck, vomiting, slight fever). From what I was told, this would not prevent future treatments, that I would probably just need to take benadryl and have a slower infusion rate. It seems that ivig is the preferred treatment for most people and that’s what I’ve been hoping would work for me, even though I had that reaction. Has anyone heard of this happening?
February 22, 2013 at 6:45 am
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.
February 22, 2013 at 6:54 am
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.
February 22, 2013 at 2:45 pm
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.
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