Dr. Roach

Dr. Keith Roach

DEAR DR. ROACH: I am a 70-year-old woman who was diagnosed with fibromyalgia decades ago. I suffered before my diagnosis and have suffered since with every single symptom that defines this disease.
It is a disease without obvious signs; therefore, we who suffer are seen as whiners and hypochondriacs. The flare-ups come in waves and in varying degrees of severity, and they are exacerbated by stress.
When I was more financially solvent, I was able to take the recommended meds for this disease, such as Lyrica and Cymbalta. They helped marginally. Now these medications, including the newest, Savella, are priced out of my reach. Big Pharma offers help, but I don’t qualify. My insurance refuses to cover even the generic forms of these medications.
I’m certain that I’m not the only one who faces this dilemma, and it leaves me without help and out of options for relief. Diet changes and exercise help marginally as well, but quite frankly, when one is suffering through a flare-up, that can make symptoms worse.
What has your experience been when treating patients with this disease? What do you suggest? — J.W.
ANSWER: First, I reassure my patients that fibromyalgia is a “real” disease and that I believe them. There is no diagnostic laboratory test, and the cause is unknown. But there are clear diagnostic criteria to make the diagnosis, and experienced clinicians can usually be sure of the diagnosis with a careful history exam. The best evidence so far suggests that fibromyalgia is a disorder of pain regulation.
I agree that managing diet, exercise and especially sleep are important in managing fibromyalgia, but as you say, sometimes they aren’t enough. Older and very cheap medicines like the tricyclic antidepressants (amitriptyline, nortriptyline and others) can sometimes be very helpful. For many patients, they’re even more effective than the newer options you mentioned, although they can sometimes come with more side effects.
Pricing of drugs in the U.S. is irrational, but I do know some ways beyond pharmaceutical assistance programs that might help. In your case, you can get dramatic prescription-drug savings using programs like GoodRx or SingleCare — or through the Cost Plus Drug Company online.
For example, for pregabalin (Lyrica), the average retail price is close to $500 per month for the usual dosage, but you can get a coupon at either SingleCare.com or GoodRx.com for about $15, which you can then use at your local pharmacy instead of using your own insurance.
CostPlusDrugs.com, by contrast, is a retail pharmacy, and your doctor would E-prescribe medications to them. They don’t have as many options, but they sell generic duloxetine (Cymbalta) at $6 for a month’s supply, which they would then mail to you. Often, the cost through these programs is less than with my patient’s insurance co-pays (which I find infuriating).
Drug companies making new and expensive drugs have little interest in selling at such a large discount through these programs, so milnacipran (Savella), which retails for about $550 a month, is still $450 to $520 on GoodRx.com through the pharmacies available to me locally.
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Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.cornell.edu or send mail to 628 Virginia Dr., Orlando, FL 32803.
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