2014 New Evidence???
After many years I have been granted an appointment with the medical aid review/appeal board. I am trying to get them to approve PROVIGIL on my chronic health benefit. I have been warned to take a compelling case. I need medical data, research papers etc to prove that this drug is substantially helping patients. For me it takes me from barely functional to having the “energy of 10 men”. It eliminates most of the problems of Lupus, diabetes, hypothyroidism and it REVERSES the effects of Delayed Sleep Phase Syndrome. It is critical to me. People see it has given me a life but I need to persuade medical people with tested/proven research and evidence.
Just read your post regarding Provigil. I have State provided insurance and they refused my initial prescription for Provigil also. They initially asked the doctor to fill out paperwork but this did not work so I ended up calling the insurance and asked for an explanation. They told me that they required me to take a total of 3 ADD medications, one of which absolutely had to be Strattera, before they would approve of Provigil. I called my doctor to tell him this and he said he would give me the script for Strattera as I already had Adderall, Ritalin, and Concerta, which all qualified for the 2 ADD medications insurance required I take in addition to Strattera. Adderall, Ritalin, and Concerta were basically the same as they all contained the same stimulant (Methylphenidate). Adderall, Ritalin, and Concerta began to work in my system within a half hour to an hour after taking them. While they did help me focus better, I did not cope well with a couple of the well-known side effects of Methylphenidate. The worse was not being able to sleep more than a few hours at night and getting sleepy during the middle of the afternoon. They tended to make me a little more agitated or anxious then I was comfortable with. I just started taking the Provigil for the first time this morning about 2 hours ago. Within the first 30 minutes I honestly felt energized for the first time in years. I am normally sleepy for the first hour or so after I get up and even though I only had 5 hours of sleep, I feel like I slept for 10. I also have to deal with severe back and shoulder pain 24/7. The increase in energy allowed me to do dress, eat breakfast, and complete my morning back and shoulder exercises within an hour of getting up, for the first time in over 10 months.
My inability to focus and concentrate on simple tasks like reading emails, news articles, etc. has made it extremely difficult to get anything done in a timely fashion. I finished the morning news, all my emails, and looked up numerous Provigil articles and discussions online in less than an hour. Normally this would take me several hours. I can't make any more comments as it is much too early to make a legitimate diagnosis, but I can honestly say so far, would recommend you do whatever you need to do in order to get it approved by your insurance so you can try the medication. I am confident you will not be disappointed. Good Luck!
Well, my neurologist's office doesn't have samples because they're a big teaching school and I think they have some rules about not being bought by the drug companies, dagnabit! The Provigil does cut through a lot of the brain fog!
I used to get free Lidoderm patches from my pain doctor; they were great! I don't think my PCP's office does samples, either, and my Sports and Spine Medicine doc just has samples of Celebrex and stuff like that.
It will work out, I know it will.
I wish you could come to Maui! I'm sure you could fit on the couch. There's a Murphy bed in the living room, but my roommate always takes that because it's right next to the sliding doors that open on the patio overlooking the ocean, and she likes to listen to the sound of the ocean.
The temperature is always around 80 degrees, with nice breezes off the ocean. The fresh papayas taste like heaven, and watching the whales from the patio every morning is a wonderful way to start the day. There's a beach below Wailea (sp?) where the sand is so soft it feels like talcum powder.
Upcountry is cooler, and there are wonderful botanical gardens, parks, etc. In a town called Makawao, there is a lot of art, and I was told that it's not surprising to see Willie Nelson walking down the street.
It's pretty cool here in Oregon now, and I hear we're expected to get some snow before long. We usually don't get much, so everybody gets really excited about it, and lots of people don't know how to drive in it. I avoid driving in the snow; I really don't have much practice, and I don't want to get hit by some yahoo that thinks they can drive like the pavement is warm and dry!
My roommate has to do some work while we're in Maui, so at least I can send you some pictures while I'm there, if we can't sneak you into a suitcase!
Love and hugs,
Kathy
Hi Sweetie!!! I will keep my fingers and toes crossed for you, that they will approve Provigil for you. You would think with all the advertisements for the med that the Dr would have samples to give you until your insurance approves it. Thats how I get my Lidoderm patches, he just saves them out for me and I drop by the office and voila I have a brown paper bag of relief. I would cut off my feet (just kidding) to get something to lift the brain fog....
Good luck with all the insurance stuff....
Wow, Maui, can I come too??? Please??? Can I??? Can I??? I will be good, I promise...I won't even make a peep... It just sounds so warm and beautiful, not like Iowa right now, its freezing!!!
Love Ya,
Ada
Thanks for the link to that site; it is very interesting. Their letter for getting a medication not on the insurance company's formulary doesn't fit this particular situation, but there are other things that may be helpful in the future.
I'll write it down so I don't forget it!
Thanks again,
Kathy
Kathy, I can't give an opinion to the right or wrongness of your letter...there is just to much brain fog today to process. However, I posted on a website I had found that supplied different letters that could be downloaded. There is one on the site entitled get the drug you need. It is to the insurance company, but the attachment part list things to be included. Here is the link.
http://www. patientsarepowerful. org/drug.cfm
It will help you to know what to ask for from your doctor to support your request.
Hope this helps
terry
Thanks again to Wonko and Quix; here is the new and improved version of the letter I will fax tomorrow to Dr. S.:
Dear Dr. S.
I’m writing once again for your help in appealing my insurance company’s denial of my Provigil prescription. A one week trial was successful in improving my energy level. Other anti-fatigue medications are not appropriate for me due to a previous trial with Cylert.
I contacted my insurance company and spoke to Brandon, a pharmacy account specialist, to find out why the prescription you wrote is not covered.
He said that more evidence showing that the medication is medically necessary to help my condition, which was listed as fatigue due to cerebral white matter disease, is needed. Can you provide such evidence, or by other means justify my need for this medication to my insurance company?
I am being evaluated by an MS Specialist who is documenting my neurological symptoms and MRI and other evidence with a differential diagnosis of multiple sclerosis. My response to the Provigil is exactly that which is seen in patients diagnosed with that disease, therefore, is it possible that I’m being increasingly suspected of having that disease?
Please let me know what is the best course for us to take with this matter. I cannot afford ongoing use of Provigil unless my insurance agrees to cover some of the cost.
I appreciate your help with this.
Sincerely,
Kathy
Unfortunately, it is Dr. S. who is sure that I have a specific disease called cerebral white matter disease. Dr. S. is not agreeing with the neurologist (who thinks I have small vessel ischemic disease from small strokes from benign arrythmias) and is sure that I don't have MS. She has some patient's who've been diagnosed with this, and thinks that is my answer, too. She is a great doctor other than having this stuck in her craw!
I have googled for hours, and find nothing about this new form of "cerebral white matter disease" that supposedly affected older people, but is now affecting younger people, too. I've told Dr. S. that I couldn't find anything about it, and she was surprised. I've told her that I've talked to a friend that is a doctor, who is sure that cerebral white matter disease is a term that covers all cerebral white matter diseases.
So, unfortunately, I have to dance around her "diagnosis". If only Dr. Y. had correctly noted my visit while in a flare of neurological symptoms, then we could possibly state that I am "increasingly suspected of having MS". It is listed as my differential diagnosis.
Dr. Y. had no problem writing the original Provigil rx, but she made it clear that if I were to continue getting it, she wanted Dr. S. to do the prescribing and follow-up.
OK, maybe I can combine Wonko's idea of a short and sweet letter, including the "My response to Provigil is exactly what is seen in MS, which is in the differential diagnosis of my MS specialist" or something like that.
The days I've been off of Provigil have reminded me of what a difference it makes in my world. I'm not "cured" by it, but life is so much better, easier, with it.
I had a hard time driving the two miles to PT today, and am fuzzy-headed and off-balance, almost falling when I got up after E-stim on my thoracic; my ribs are stuck. My vision is blurry.
I'll print out both of your ideas, and ask my roommate to help me think it though when she gets home.
I really don't want to take a drug that can increase my heart rate. I'll leave that out, until later. Good idea.
Thank you for you help, I really do appreciate it!
Kathy
I really like your letter. Very direct and too the point.
Yvette
Hi Kathy,
I think it can be shortened and more direct:
Dear Dr. Please Support My Case to My Insurance Company,
I’m writing once again for your help in appealing my insurance company's denial of my Provigil prescription. A one week trial was successful in improving my energy level. Other anti-fatigue medications are not appropriate for me due to a previous trial with Cylert.
I contacted my insurance company and spoke to Brandon, a pharmacy account specialist, to find out why the prescription you wrote is not covered.
He said that more evidence showing that the medication is medically necessary to help my condition is needed. Can you provide such evidence, or by other means justify my need for this medication to my insurance company?
Please let me know what is the best course for us to take with this matter. I cannot afford ongoing use of Provigil unless my insurance agrees to cover some of the cost.
Sincerely,
Kathy, Who Wants to Get the Most Out of Maui.
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In general, I think it's more important to be clear about what you are asking for and why than to include details about the old records and upcoming trips. If he needs the records or details about your lifestyle, I'm sure he'll ask.
If you're really gunning for Provigil, I think you shouldn't mention that you'd also be willing to try aderall (sp?). If you don't get the appeal, then discuss a trial with another med.
These are just my $0.02, you know not to take any of my advice too seriously :)
Good luck
Kathy, this would depend on your relationship with your PCP. You might ask him to state that you are "increasingly suspected" of having MS. Your response to the Provigil is exactly that which is seen in the disease. You are seeing an MS Specialist who is keeping MS in the differential diagnosis.
These words are far better than dancing around "cerebral white matter disease" I think. And they give a stronger case for allowing the med.
None of this is false, so you are not asking the PCP to be unethical.
Just a thought.
Quix