Thalidomide! Anyone experienced this drug? Any advice, esp. on getting authorization from Insurance?

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townsend
Regular Member


Date Joined Mar 2004
Total Posts : 97
   Posted 7/5/2011 8:38 PM (GMT -6)   
Happy day-after-the-4th, All!

My insurance company is giving my Rheum. a hard time about approving my taking Thalidomide. I need it for my skin condition. Rheumy has never prescribed it before, so maybe just didn't know how to answer their questions about how/why it was necessary. I'm already planning to call a couple of other Dr.s I've seen who HAVE previously prescribed it (I only saw them once for second opinions, to advise my regular Rheumy. - these other guys are hotshots who don't take insurance and charge 500+ per session - I only saw them to figure out what to do b/c I was in crisis with burn-like lupus rash spreading like wildfire all over my body. They both recommended Thalidomide.)

I am no longer in crisis now, just scarred (not scared!) but do anticipate that the rash will likely return at some point (it keeps coming back every few months, and worse each time - last time I ended up in a burn unit for a few days.) I want to have the insurance ready to cooperate quickly when and if it does. I can't pay out of pocket - it's $8,000 for a month's supply!

My questions are these:
Has anyone taken this med. before?
Did you have trouble getting your insurance to pay for it?
How can you "prove" that it's for Lupus?
What does your doctor have to say or do to prove this? I've seen a million articles about it's effectiveness for skin lupus eruptions online, so I'm not sure what the big deal is.... except for that the insurance company doesn't want to pay for it.


Any suggestions could be awesome!! Thanks guys!

Townsend
Diagnosed: Sjogren's '94, Raynauds 2000, Vasculitis 2002, Lupus SLE 2004, Lupus Nephritis 2007 - progressive w/ "diffuse proliferative lesions", controlled, and what looks like Discoid coming and going.
Meds:
LUPUS: Cellcept 2,500 mg, Chloroquine 250 mg, Methylprednisolone 16 mg. BP: Spironolactone HTZ 25/25, Metropolol 100, Cozar 100, Nexium, Salagen. Vitamins/Minerals: Multi, Calcium, D, Iron

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 610
   Posted 7/6/2011 7:33 AM (GMT -6)   
I had taken Thalidomide for one day and then stopped because I am allergic to this drug.  The doc used it because I had TB got into my spine and nothing seemed to work on me at that time.   This drug is not for pregnant woman or who plans to be pregnant.  The children will be born with deformities as a consequence of this drug.  I do not know this drug can be used in Lupus, and never heard of it used in Lupus.  
I dun know about insurance coverage because I am in UK.   

townsend
Regular Member


Date Joined Mar 2004
Total Posts : 97
   Posted 7/6/2011 11:15 AM (GMT -6)   
Yeah, apparently, it is VERY effective with Lupus manifestations of the skin. The company that controls the drug here in the US is (I hear) much more vigilant about controlling it's being prescribed. I had to see a gynecologist, get at least TWO forms of birth control, sign a waiver promising to use them, and take phone interview regarding this as well. Additionally, I have to take monthly pregnancy tests, and when it comes back negatvie, my Rheum can prescribe me only 28 days worth at a time. The script is only good for one week. Then, just before I run out, I have to do the same process over again: pregnancy test, phone interview (both patient and Dr.), immediately get new script that is valid for one week only.

Lots of the most famous and expensive Drs here in NYC are telling me this will treat my current disease manifestation. But I need to get them to tell the stupid insurance about that. I'm gonna go call them right now.
Diagnosed: Sjogren's '94, Raynauds 2000, Vasculitis 2002, Lupus SLE 2004, Lupus Nephritis 2007 - progressive w/ "diffuse proliferative lesions", controlled, and what looks like Discoid coming and going.
Meds:
LUPUS: Cellcept 2,500 mg, Chloroquine 250 mg, Methylprednisolone 16 mg. BP: Spironolactone HTZ 25/25, Metropolol 100, Cozar 100, Nexium, Salagen. Vitamins/Minerals: Multi, Calcium, D, Iron

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 7/9/2011 3:46 PM (GMT -6)   
Hi!
It might help to build a file of copies of research studies that have been published to support it's use in your case, check the PDR and new drug books for any reference to thalidomide and indications for use, print them off, ask the $$$ hotshots office nurse to send you a copy of their formal consult/recommendation, ask your rheumy's nurse to do the same, scan everything you can find into your computer, save a hardcopy of everything, and then...... call the 800 number on the back of your insurance card.....ask to speak to a supervisor, (take notes of times, names, and quote everything you are told over the phone and by whom), and politely demand the paperwork you need to start the formal, written, required by law, LEGAL process for a denial review. Insurance companies all have one, and start documenting every time you talk to anyone about this. If necessary, think lawyer..... many healthcare experienced lawyers will give an initial consult for free. Good luck, and keep us posted,
hugs,
suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night. Advair, Albuterol and DuoNeb inhalers.
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