Trying a new medication often gets your hopes raised, but it can also cause hesitation due to uncertainty about side effects. Not knowing how you will respond to a new medication is always a challenge. In this month’s eNews we discuss a simple method that may be applied to evaluating the effectiveness of any new medication. In addition, we have several interesting results and comments from the 2010 Medications Survey of our Members. Although the full feature article on the survey will appear in the April Journal, the sections below should help you better understand your variable response to the different classes of medications.

Getting properly diagnosed with any illness is an essential first step to receiving more effective treatments. Read about recent research that points to differences in how physicians are diagnosing patients. Don’t forget that May 12 Awareness Day is coming up soon. You still have time to order your awareness items.

In this eNews Alert:

• Will Your Fibromyalgia Med Work?
  
  
• Meds Survey
  
  
• Men Getting Short Changed in Fibro Diagnosis?
  
  
• Spread a Little Fibromyalgia Awareness
  
  
• Keep Your Membership Current
  
  
• Update your E-mail Address with Us

The chances that a medication will effectively reduce your fibromyalgia symptoms are usually less than 50 percent, and quite often the drug will produce intolerable side effects. Given these odds, the trial-and-error process is a difficult road for fibromaylgia patients to take. However, a recent study by researchers in the United Kingdom may help.

Read more about this study in the Latest News section of our website.

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More than 3,500 Members completed our Medications Survey, and we wish to thank those of you who took the time to participate! The survey revealed many interesting findings that are highlighted in the April issue of the Journal, but several important points were left out because they deserve their own little attention. Below are three issues that certainly warrant special note.

Why Do Some Meds Make FM Worse?

Many patients who took the survey asked a valid question: “Why do the meds I try tend to cause the very symptoms that I want to get rid of?” Sure the medications may help with the pain, but the common side effects of daytime fatigue, brain fog, dizziness/balance issues, dry mouth, constipation (GI upset), and disturbed sleep are the same symptoms that you are hoping to alleviate. And it doesn’t help that most of the drugs prescribed for fibromyalgia (FM) cause weight gain, which leads to more daytime lethargy and it really takes a bite out of one’s self-esteem.

As one Member puts it: “I just wish they could come up with something that did not cause so much fatigue and would work better at relaxing the muscles that are always in knots.” Indeed, the survey participants did not rate muscle relaxants as very effective. Another Member says, “Every drug I’ve used for FM has made me numb, dumb, fat, and turned me into a shadow of my former self.”

While not every medication will cause such negative side effects for all patients, it is a real dilemma for many. Antidepressants are one of the most common classes of medications prescribed for FM. In general, they cause GI upset, dry mouth, weight gain, and they often worsen sleep even when taken in the morning. Examples of medications in this class include amitriptyline, trazodone, cyclobenzaprine (also a muscle relaxant), Cymbalta (duloxetine), Prozac (fluoxetine), Zoloft (sertraline), Effexor (venlafaxine), and Ultram (tramadol), which also functions as a very weak opioid. Even the latest FDA-approved drug for FM, Savella (milnacipran), is an antidepressant. While it is much less likely to put on the pounds, the GI side effects may be worse than other drugs in this group.

Another common class of meds prescribed for FM are anti-epileptic drugs (AEDs), such as Lyrica (pregabalin) and Neurontin (gabapentin). Although other AEDs do not cause weight gain, these two do. Of the 2,240 patients (62 percent) who said they tried Lyrica, almost half complained of weight gain. Even when the drug was working for the fibro, some had to quit this med. “I would have continued on Lyrica if it weren’t for my weight gain, which was increased due to my maddening hunger all the time,” recounts one Member.

After weight gain, the other most frequently endorsed side effects of Lyrica were dizziness (35 percent), increased difficulty concentrating (30 percent), and sleepiness (27 percent). The sedating effects of Lyrica can be used to help with sleep, but if you need daytime pain-relief, the aggravation of the fibro fog is a real concern. A recent study in healthy individuals taking Lyrica showed greater cognitive impairments on three out of nine tests when compared to people taking a placebo (sugar pill). *

Why the side effects can be so severe in some patients and mild in others is not understood. However, given that the many side effects of the drugs available to treat FM happen to mirror the symptoms of this disease, you have every right to complain.

* Salinsky M, et al. Neurology 74:755-61, 2010.

Love It or Outlaw It

The response Members had to the three FDA-approved drugs was like night and day. Some commented on the dramatic favorable responses you had to one of these drugs and others stated why you thought the drug should be taken off the market. Here is just a sampling of the “Love It or Outlaw It” comments made by the survey participants:

“Lyrica has made me more functional physically than I have been since I got the fibro. The side effects are more than worth it.”

“Lyrica did not work for me at all. I felt like a drunk 24/7.”

“120 mg of Cymbalta has made all of the difference in the world. I have had fibro for over 20 years but now I am back to jogging.”

“The insomnia caused by Cymbalta was extreme. And going off the drug was shear hell!”

“Savella is the only medication that has improved my symptoms in the last ten years. The side effects went away after a few weeks.”

“Savella made me feel like I was about to have a heart attack.”

By the way, 2,100 of the survey participants had tried Cymbalta, but more than half discontinued the drug because of side effects. Only 19 percent of the Members responding to the survey said they had tried Savella, and more than half quit the drug because of intolerable side effects. Clearly, trying a new drug can lead to success for some and disaster for others.

Don’t Rock the Boat

Testing a new medication may produce benefits, but many Members indicated they were hesitant to do so. Why? Trying a new drug (even if it has been on the market for years) can cause side effects that “rock the boat” for patients who have already found some treatments that work. As one Member stated, “I have not taken any of the ‛newer’ meds as my current regimen is satisfactory.” Another said, “I’ve tried many of the medications listed but don’t like the side effects. I’m just sticking with my current meds and handling the pain.” Indeed, many Members said that they were staying on the medications that seemed to help somewhat and then they were taking care of their remaining symptoms with nondrug therapies, such as sitting in a hot tub, regular massages, use of nutritional supplements (such as magnesium), acupuncture, daily stretching routines, and many lifestyle changes.

Augmenting your medication treatment plan with nondrug therapies is essential for helping to ease your FM symptoms. No combination of drugs will take care of everything, and for many, the medications alone may be grossly inadequate. Although this survey focused solely on medications, we did not intend to diminish the importance of nondrug approaches.

Summing up the difficulties of trying new meds and why you may just want to stick with those that seem to be working for you, one Member gave the following account: “My doctor reviewed all past and current medications, and concluded that the new FDA-approved meds probably would not help me. I was SO GLAD to not have to try and fail a number of medications!”

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Researchers at George Washington University in Washington, D.C., were interested in finding out what criteria doctors considered when making their fibromyalgia diagnoses.¹

They realize that a doctor-supported FM diagnosis can make a significant difference in the financial state of men and women filing for disability income. Sadly, an improper diagnosis can lead to poor or inappropriate health care for patients not to mention the loss of personal credibility, or simply enduring the stigma and negative attitude of co-workers and family members. Ultimately, a diagnosis involves many personal, social, and psychological factors for each patient.

To study this thought process leading to a diagnosis, the researchers wanted to learn to what degree rheumatologists relied on the American College of Rheumatology’s (ACR) diagnostic criteria. Also, since the large majority of FM diagnoses are made on women, they wanted to know if the doctors were applying the same criteria when diagnosing men.

Sixty-one rheumatologists (39 men and 22 women) from the D.C. area and others attending medical conferences on the East Coast volunteered for the study. At random, 28 rheumatologists received a female case study and 33 received a male case study.

Each doctor was given 21 diagnostic criteria for FM (see box) and asked to select the least number of criteria that would lead them to a confident FM diagnosis. Unknown to the study participants, each of the criteria received different strength values depending upon whether it was a physical or subjective test. The doctors’ input was assessed using a mathematical analysis that can identify which diagnostic criteria were used most often by physicians when confronted with a male or female patient.

On average, rheumatologists chose five criteria to make a diagnosis for men or women. Two doctors chose only the two ACR criteria for diagnosis (tender points and widespread pain). Physicians who received case studies of women chose between two and 10 criteria, and 29 percent included the ACR criteria. Rheumatologists who received men chose between one and 13 criteria with 55 percent including the two ACR criteria. No doctors included the genetic link of “first-degree relative with fibro” in their diagnosis.

Interestingly, after some serious number crunching, the analysis revealed a potential discrimination against male patients when doctors disagreed with the value of specific criteria including tender points, normal sedimentation rate, normal thyroid tests, fatigue, and sleep quality. Of these five criteria, only one was statistically used more often when diagnosing men – the presence of 11 of 18 tender points.

“Simply put,” write the study authors, “rheumatologists were more likely to require a physical finding to support their conclusion when the gender of the patient was male.”

It is generally accepted that men have higher pain thresholds than women. Actually, research has shown that pressure pain thresholds in healthy men are about 25 percent higher than they are in healthy women.^2,3 So applying the same ACR recommended tender point pressure of 4 kg to examine both men and women would lead to an under-diagnosing of men with fibro.

As part of a separate research team in Sweden, Karl G. Henriksson, M.D., Ph.D., said that “The gender difference between FM and non-FM may reflect a bias in the current criteria, since the tender point construct development is derived largely from female patients and healthy women have lower pressure pain thresholds than healthy men."⁴ And if additional tender point pressure were applied for men, and the ACR criteria were slightly more relaxed, more men would and should be diagnosed with FM.

So, along with the challenges associated with diagnosing fibro, doctors seem to be requiring stronger physical findings when diagnosing men. While these results are preliminary, the researchers speculate that physicians may be reluctant to label men with FM, and that more reliable and valid diagnostic criteria would improve the situation.

1. Katz JD., et al. Gender Medicine 7(1):19-27, 2010
2. Chesterton LS, et al. Pain 101(3):259-66, 2003.
3. Maquet D, et al. Eur J Pain 8:111-117, 2004.
4.Gerdle B, et al. Eur J Pain 12(5):600-10, 2008.

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Small steps have led to great strides in fibromyalgia awareness over the years. Again this year, the Fibromyalgia Network invites each and every one of you to continue this effort by joining the Awareness Day activities on May 12 or any day you feel up to it.

The Awareness campaign is designed to minimize the time and energy requirements on your part. The materials are subtle reminders that while your illness is invisible, it does exist. All of our items are provided to you for only the cost of printing and postage. For more information, visit the Awareness page of our website at www.fmnetnews.com/awareness.

Our only goal is to make it as easy as possible for you to spread awareness. We offer purple wristbands, popular ribbon-shaped car magnets, static-charged decals, posters, and lapel pins. Imprinted on all of these items is "Fibromyalgia - It's REAL."

• Purple Wristbands - These silicone wristbands are debossed with “Fibromyalgia – It’s REAL”
• Car Magnets - The 3 7/8-by-8 inch magnets offer an easy and convenient way to spread Awareness.
• Removable Decals - These amazing 5.5-by-8.5 inch static-charged decals adhere to virtually all smooth surfaces without any sticky residue.
• Awareness Poster — These 18-by-24 inch, full-color posters come with a free May 12 Fibromyalgia Awareness Day sticker. Use at health fairs and Awareness events to remind others that “Fibromyalgia –It’s REAL.” Each order comes with Bookmarks.
• Awareness Pins – The 1.5-inch round pins are small enough to wear on a lapel, but bright enough to raise Awareness. Each order comes with Bookmarks.

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If your Membership expires soon, renew now before you forget.

To find out when your Membership expires, look above the mailing address on the back of your Journal or call us at (800) 853-2929 for your expiration date.

The April issue contains the Meds Survey feature article and listing of medications that patients felt were most effective and drugs most often prescribed by doctors. It also contains advice from an expert on what to consider when trying a new medication; how low iron can relate to your fibro symptoms; why your pain seems to migrate; warm up stretches to get you ready for spring; a therapy that may reverse fibro; and two patients who have found therapies that help with bladder problems and knotted muscles. Don't miss a single issue.

Call us today at (800) 853-2929 or renew online. If you have questions about your Membership expiration date, please call us.

The Fibromyalgia Network is a patient-advocacy organization that keeps members up to date on the latest research and best possible treatments, including those being developed, so you can learn about every advantage to live a quality life.

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The Fibromyalgia Network has provided a form so you can update your e-mail address online. This link will be available to you at the bottom of all eNews Alerts for your convenience. Feel free to call us with any changes at our toll-free number (800) 853-2929 Monday through Friday from 9 a.m. to 5 p.m., PST. As always, the information you provide us is held in strict confidence. We will not share your information with anyone.

To update your e-mail go to www.fmnetnews.com/change.

To help us avoid unnecessary junk e-mail, this option is only available through the above web address.

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Wishing you a great spring season and warmer days ahead!

Kristin Thorson & the Staff of FM Network

Fibromyalgia Network ... Helping Patients Since 1988

PO Box 31750 | Tucson, AZ 85751-1750 | (800) 853-2929 | www.fmnetnews.com 

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