One Patient's Positive Perspectives

Waiting vacation  mail

When we arrived home from vacation last week, one of the waiting pieces of mail was from my insurance company.  They had made a pre-certification determination on my rheumatologist’s prescription for peripheral neuropathy caused by my lupus.  My doctor and I had discussed my increasing need to use pain medications to “drown out” the neuropathy pain to get to sleep.  My doctor had agreed with me that maybe there was a better way to deal with the neuropathy, and prescribed Lyrica (pregabalin).

All I know is I need rest, and don’t like the idea of taking narcotic or other habit-forming drugs on a frequent basis, just to escape the  night-onset neuropathy pain that is disrupting my sleep.

Read a little more about lupus neuropathy from LFA webinar transcripts by a leading neurologist, Robin L. Brey, M.D.*:

Robin L. Brey, M.D.

The American College of Rheumatology has identified 19 different ways that lupus can affect the nervous system, and the specific signs depend on which one of these it is. Some common big categories include memory loss, seizures, stroke, depression, anxiety, headache, and neuropathy.

In lupus, it [neuropathy] is usually caused by inflammation or vasculitis of the nerves, but peripheral neuropathy is most common in people with diabetes or kidney disease, both of which can be seen in lupus either due to disease activity or side effects to medications used to treat lupus. Often, neuropathy gets better and does not lead to something worse. Fortunately, nerves can regenerate once the cause of the neuropathy is found and treated.

We are not really sure how lupus affects the peripheral nerves exactly. In some patients, it is due to vasculitis, which is very serious and must be treated aggressively with “chemo” type drugs. In most patients, however, it is probably due to inflammation (similar to what you have going on in the joint when you experience arthritis) that is affecting the peripheral nerves. Fortunately, peripheral nerves can recover completely with the right treatment.


Reading the letter, I learned that my insurance company denied my doctor’s request for the Lyrica for a number of reasons.  First, it wasn’t listed on the formulary.  Then, they suggested that Neurontin, an anti-seizure medication, is available instead.  Interestingly, Neurontin costs about 1/4 the cost of Lyrica.  If diabetes or kidney disease were the cause of my neuropathy, they would pay for it without a problem.

My doctor wanted to see me 30 days after starting the drug, just a few days from now, but followup without taking the new drug seems somewhat pointless. I am not sure how to proceed, so my next rheumatologist visit will probably be used to come up with a new game plan for treating the neuropathy.

No FDA Approval for Lupus

I have comparatively great insurance, but still meet these obstacles in getting medications. I can only begin to imagine the difficulties people with medicare or other similar insurance plans have getting their medications approved. Neither Neurontin nor Lyrica are “on label” approved by the FDA for lupus neuropathy, and they cited some complex set of treatment and coverage guidelines as justification for denying the coverage.

I will accept this obstacle as a necessary step in determining the best course of action, realizing that the American medical and insurance systems are not for the passive or faint of heart.  I assume my rheumatologist will appeal the decision, so we will wait and see what he recommends from here.


* Dr. Brey is a Professor of Medicine in the Division of Neurology at the University of Texas Health Science Center at San Antonio (UTHSCSA). She is the Associate Dean for Research of the UTHSCSA School of Medicine and the Deputy Director of the Institute for Integration of Medicine and Science. Her research interests include the study of the relationship between antiphospholipid antibodies and stroke as well as neuropsychiatric manifestations of Systemic Lupus Erythematosus (NPSLE).

Dr. Brey now serves on the Executive Committee of the Scientific Advisory Committee for the Lupus Foundation of America (LFA) and the LFA executive committee to study lupus flares. Dr. Brey also serves on the American Academy of Neurology (AAN) Board of Directors and is the Chairperson for the AAN Public Relations and Media Relations Committee. She was the founding section editor for the Patient Page in Neurology and serves as the Editor-in-Chief of Neurology Now, the AAN publication for neurology patients, their families and the lay public.

Read Dr. Brey’s physician education presentation about Neuropsychiatric Lupus at and transcripts of Lupus Foundation of America webinars from which the above quotes were taken, at Neurology/CNS & Lupus and Neurology and Lupus.


Comments on: "Perplexed about Lupus prescriptions and formularies" (7)

  1. […] Perplexed about Lupus prescriptions and formularies ( Share this:FacebookTwitterLinkedInPrintMoreStumbleUponEmailLike this:LikeBe the first to like this. […]

  2. thechronicallyawesomepost said:

    My experiences with Lyrica and Neurontin have been slightly different. When I began Lyrica (and my very high-cost insurance graciously covered some of the cost), I thought it was helping the pain somewhat, but not as well as I had hoped. However, that was short lived because I began to experience mild hallucinations and other mental-health related issues. I was sent to a neuro-psychiatrist who immediately took me off Lyrica. I was told that it is not uncommon for patients to develop side effects such as hallucinations with this drug. Like Neurontin, Lyrica is an anti-seizure drug (an anticonvulsant). After the Lyrica fiasco I was put on Neurontin by my rheumatologist, but since have not seen any great improvement. I’m still on a relatively moderate dose, so I have a chance to try a higher one. At first Neurontin also made me feel tired, but my body adjusted quickly and I almost never feel any side effects from it. Alas, every drug works differently for everyone. I’m currently on Methotrexate, along with a slew of other drugs, but the pain has been extremely difficult to control. I wish you luck, and I hope you find relief.

    • CAP: Thank you so much for sharing your experience with both of these drugs. This gives me more to consider. I am concerned that I don’t want to take something that may have worse side effects that taking narcotic pain medications, especially since I do not need it every night.

      My husband has epilepsy, so I am somewhat familiar with normal seizure medications used for that, but still don’t know much their use for neuropathy. I am at the beginning of a journey for treating my neuropathy.

      I appreciate your comments very much! LA

  3. Hey all, for about ten years I have been having severe upper arm pain that has been getting worse and more frequent, which my old doc wrote off as ‘muscle spasms’, then gave me flexeril and sent me on my way. I am so frustrated and tired of being in pain. Does this sound like anything to anyone? Can B12 deficiency really be the one and only sole cause of this? My neuro told me that B12 def/neuropathy is usually more of a symptom than a disease within itself. I would rather be told I have lupus or RA or ss than have to wonder all the time.

    • Lisa: There are many things that can cause upper left arm pain beside neuropathy, and neuropathy can be due to many different causes, including but not limited to systemic illness like lupus, kidney disease, diabetes, thyroid imbalance ore even also physical injury to the involved nerves.

      I personally know that problems with the cervical vertebrae in my neck caused gnawing radiating pain and/or numbness in my left arm and fingers. Mine was from damage and inflammation from pinching the nerve roots where they come through the vertebrae openings (neural foramina) due to herniated disks and disk degeneration after a serious injury going head first into a car windshield. This has required MRIs and CT-Scans to diagnose, and has been treated by three different series of neuro rehab therapy sessions under the care of a neurosurgeon. The neurosurgeon also sent me to a conservative chiropractor he trusted with my scans to keep the herniated disks and vertebrae in the best alignment possible to minimize further risks of impingement and nerve damage. He told me the deeply pinched and inflamed nerve would take months to heal, and he was right. My outcome has been very tolerable and manageable without spine surgery.

      Another well-known cause of LEFT arm pain can be an important indicator, especially in women, of heart problems. If have never had this issue, but have heard from women’s heart health awareness presentations and my annual work CPR training classes that this seemingly unrelated symptom can be a critical sign of pending heart issues.

      My recommendation to you is continue to seek your doctor’s help with your increasing pain, or get a second opinion if you are unhappy with the outcome. Don’t settle for an unresolved or inconclusive answer!

      Best wishes… LA

  4. I was unable to get lyrica as well and I did take Neurontin for about three years. I am currently no longer on the Neurontin however I do take a narcotic drug on a daily basis for pain and often to help me sleep at night. I have had to change meds several times because insurance does not want to pay for them. It is frustrating and in the end can be damaging to your body!!! Lyrica is not without it’s side effects and for some with lupus it doesn’t even help. Neurontin did help my neuropathy however in combination with other meds it tended to make me a walking zombie. You can also try a mild muscle relaxer like robaxin or tizanadine to help with that as well!!! Good luck…all I can say is lupus really stinks and it’s hard to find the best medicinal fit for each person!

    • Lori: Thanks for sharing about your experience with Neurontin. I certainly don’t want to be a walking zombie, that defeats the purpose of trying to get a good night’s sleep. I would do better with less sleep and drugged up all the time. LA

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