Few Fibromyalgia Patients Adhere to Treatment Regimens, Study Reveals

Few Fibromyalgia Patients Adhere to Treatment Regimens, Study Reveals

Adherence to treatment is very poor among fibromyalgia (FM) patients, according to a study conducted in a real-life setting that was published in The Journal of Rheumatology. Only 9.3 percent of patients followed the prescribed treatment regimen for more than a year.

The study “Adherence and Persistence with Drug Therapy among Fibromyalgia Patients: Data from a Large Health Maintenance Organization” was conducted by a team of researchers from Tel Aviv University, Israel. The study was supported by Pfizer.

About 2 to 5 percent of women worldwide are affected by FM. With no available cure for the condition, treatments are focused on preventing pain sensation, restoring sleep time, and improving overall physical functions.

Non-pharmacologic strategies such as exercise and cognitive-based therapies are commonly used, but many patients need pharmacological management of their symptoms.

The majority of the medicines prescribed for FM were designed to regulate how the brain and nerve cells interpret signals (neuromodulatory function). The most commonly used classes of drugs are tricyclic antidepressant (TCA) compounds, selective serotonin reuptake inhibitor (SSRI), serotonin/norepinephrine reuptake inhibitor (SNRI) antidepressants, and the anticonvulsant Lyrica (pregabalin).

For FM patients, as for many others with chronic illnesses, adherence to therapy can be hard. Daily administration regimens and therapy intolerance are some of the factors contributing to non-adherence. But also social stigma, patient disbelief about therapies, and poor patient-doctor communication can increase the risk of nonadherence to medication.

Now, researchers evaluated therapy adherence and persistence in a group of 3,932 patients diagnosed with FM from 2008 and 2011, who were followed by the health maintenance organization Maccabi Healthcare Services in Israel.

About 41.2 percent of the patients had received a prescription for an FM medication in the year before diagnosis. Of the remaining patients, 56.1 percent were prescribed treatment within the first year after diagnosis, and 45 percent stopped taking at least one of the medications during that time period.

Within the first year after diagnosis, 59.1 percent of patients were prescribed TCA, 46.7 percent antidepressants (SSRI/SNRI), and 24.1 percent received Lyrica. Combination of therapies of different classes was rare in this population.

Researchers found that 79.3 percent of the patients who were prescribed for the first time after FM diagnosis discontinued therapy in the following year. After one year from therapy initiation with SSRI/SNRI antidepressants, TCA, or anti-epileptics, only 26.3%, 18.4%, and 9.0%, respectively, were still following treatment.

Anxiety and depression were psychological features that were 2.2 times more prevalent among patients who received treatment before FM diagnosis, compared to patients who were not receiving any FM medicines.

Among patients who were prescribed therapies, researchers found that the mean proportion of days covered by any therapy during one year was 26%. Indeed, 60.5% of the patients took the medicines during less than 20% of the days, and only 9.3% of the patients followed treatment regimen for more than 80% of the year.

Overall, these results show that “in an Israeli ‘real-life’ population of patients with FM, persistence and adherence with FM therapy in the year following diagnosis is remarkably low,” the researchers wrote.

These findings are in line with previous studies, and further suggest that only a small minority of patients who achieve clinical therapeutic benefit with the prescribed therapies are willing to continue with these medications for intervals longer than a year.

“Our results clearly indicate that there is an urgent need for new therapies with improved effectiveness and better tolerability for patients with FM. Physicians should keep in mind the problematic characteristic of adherence when evaluating and treating patients with FM, so that physicians can intervene and reach out to those who are at higher risk of nonadherence.” the team concluded.

34 comments

  1. Suzie says:

    Two years on antidepressants led me to dark depression, 30 pounds plus and worse insomnia.
    One year on alternative treatment (Dr St Amond of UCLA) and hypoglycemic diet led no where.
    I am trying Ketogenic Diet and it is helping some days.

  2. Katherine Johnson says:

    If the drugs being prescribed don’t actually work, then why would you keep taking them? I gain 50lbs on Lyrica and it didn’t actually help much, so no I didn’t keep taking the medication that wasn’t working and was making me fat. Cannabis is much better than anything the drug companies have put out. It’s the only thing that’s been effective for my pain, and bonus, it didn’t make me fat.

  3. John says:

    This study was supported by Pfizer which certainly has an interest in keeping patients on their pharma regimes for an extended period of time. My mother has FM, and she has seen countless doctors, tried many different types of drugs (and naturopathic solutions) to no avail. A major reason why fibro patients do not stick to their regimes is that the medication doesn’t work or the meds do not treat all the varied symptoms of FM.

  4. Denise Bault says:

    DUH! A study done by a PHARMACEUTICAL COMPANY and people aren’t adhering to it. Would they continue to take medication that doesn’t work? Of course we don’t adhere. We get off the toxic stuff they push every day and every evening during the news BECAUSE THEIR CRAP DOESN’T WORK, that’s why.

  5. I so agree Denise. I got a chuckle out of the advise for a better Dr. patient relationship. Ha,if only. Most are no help with this illness,or they write us off as “crazy”, hand us a bunch of pills,and send us on our way. Grrrr !! Mine told me to continue researching fibro ! He really doesn” know how to treat it. At least he was honest. We end up medicating the side effects of the drugs we take.No wonder we get depressed !! We are on the merry-go-round.These studies make my blood boil. WE are not stupid.Sorry for the rant. I am 69, and I don’t think a cure is in sight. I’m sure I will die with this illness.Thank you all for being here for support !! God Bless.

  6. Kathy says:

    I agree! The only thing that has helped with the pain is norco. Of course now there is a “war on opioids.” The fibro drugs didn’t help. They made me feel like I was in early Alzheimer’s . After getting off those, my mind is clearer. I take an antidepressant and I think it puts me in a better frame of mind for dealing with the pain. My doc won’t let me have a good muscle relaxer because they are addictive. Norco isn’t?! There is no cure for this yet nor do I see one in the future. I foresee a lot of chronic pain sufferers taking their own lives because of pharma and government interference in treating pain. I will live with this the rest of my life. It’s time for some serious research into this. Give us the relief we need to live a reasonably normal life.

    • Katherine Johnson says:

      You should try cannabis if you can get it. It’s far more effective than opioids for fibro, it’s not physically addictive (you don’t go into withdrawal like you do with opioid cessation) and doesn’t make you fat. Best of all there’s limited doctor interaction and they can’t hold you hostage by controlling your pain drugs. I can’t imagine in my wildest dreams ever trusting a doctor enough to risk withdrawal at their whims.

    • Kelli Allred says:

      OMG – Kathy, you said exactly what the rest of us are screaming about: That Norco/Lortab is the ONLY med that has been effective in treating my fibro and lupus pain — for 20 years I took it in small doses, almost daily. Now I’m stuck with Tramadol, which only works in high doses. AND I live in a state in which cannabis is illegal (even if I buy it in a neighboring state). Lyrica — what a debacle! I gained 20# in 6 months. And they wonder why we stop taking it??? I’m 64 and remain active – I work out gently in the pool and in a gym. Nothing helps, but if they give us some new options I’ll at least still be able to walk and move about freely. I’m not giving in to this crappy disease, and I’m not giving up hope for an all-out cure. But allow me my cynicism in the meantime.

    • exactly… because itssssss. ..pain. Do you think they know that’s the main part of it. I also feel it was given a name because a lot of people were finally stepping forward and being honest about living in pain. I ended up with my FM being a near death brain tumor and went 3 yrs. Now I suffer from the basic one called, chronic pain. When people in the news pass of an overdose and they say the O word and that could mean street illegal drugs as well and a lot of times are when people read through it. Hydrocodone was give for years and never works. I hate to admit to “normal people” that I live with a chronic illness and it’s called chronic pain from a tumor missed. A GI specialist removed 90% of my large intestines and after 9 months of cutting on me on saturday and sunday mornings, a few times a week. He finally asked if I had my gallbladder? I was not getting better, infected when he opened me every time, months of stays all the while being a single mom. Lost friends, all mostly, besties in this 14 yr. My daughter is healthy. My pregnancy caused the tumor and I was healthy and a pro athlete and never had to advocate for my heath. I am chronic and pissed. I started a blog just for this. getting awareness out to people who are going through or may in the future. Demand test, MRI, CT SCAN. Not only blood work to just tell us we are good and take a vitamin

  7. Betsy Jacobson (formerly Fibrobetsy) says:

    I agree with absolutely everyone. Why take pills that don’t work? When I was trying to help PWFM, I sent each patient 7 pages of all kinds of suggestions about how to deal with FM, including treatment modalities, totally exclusive of meds, of course. I included books and available papers, etc. Do any of your doctors do this? I don’t think so. And are they all aware that FM is a CNS condition which almost all of their meds wouldn’t help?

  8. DJ says:

    I have tried many treatments and the side effects were worse than the FM. Stayed on antidepressant for 3 year and gained 60lbs. Why stay on them?

  9. Debra Robinson says:

    I am going to come in center of the road. I am a Reiki Master but I also take a good handful of different RX Prescriptions. Fibromyalgia is not going to be my life it is just going to be a part of it. I do everything that I can to make sure that I am able to live my life to the fullest and believe me I don’t have a light case of Fibro. In 2007 I was tested from everything from Cancer to Lupus before they realized that it was Fibromyalgia and for a while, I did the “oh I can’t, I have Fibro.” Yeah, there are days when its hard to get out of bed and there are some activities that I used to love to do that I just don’t do anymore such as horseback riding. I did loose my husband and I think maybe that was to Fibro because I don’t care if my house isn’t spotless. Come to see me, come on, coming to see my house make an appointment. I work full-time- I have to- for some reason, they are funny about you paying your bills and stuff. I chose to use RX and natural herbs, energy, and crystal therapy. I also don’t allow myself to dwell in negativity so I don’t watch the news because nothing positive ever is on it. If FB gets to negative I check off it for a while. Mind over Matter. and yes the God-awful exercise. It causes me pain but how much pain would I be in if I didn’t do it and try to stay and least a little loose?

    • Kelli Allred says:

      You are so wise! Thanks for sharing, because I lived my life like you until I just couldn’t work full-time anymore. I was a college writing instructor, but the hours required to prepare, teach, and grade papers overwhelmed me. I’m a LOT better emotionally, now that I can attend to my own needs. Good luck to you!

  10. Nuschler says:

    As a Nurse Practitioner I get angry, frustrated. OUT OF MY MIND when I read these sorts of “studies.”

    Ever think of asking patients? “There, there little girl, do as we tell you!”

    Then when we don’t take their awful meds, they publish studies showing that it’s OUR fault! The study shows that patients with FMS do follow-up w cognitive therapy and walking. THE MEDS DON’T WORK.

    If you watch a Lyrica advertisement–they’re now going after patients with peripheral neuropathy–It says Side effects: “Possible suicidal ACTION” not just ideation. I wrote up that adverse action report about Lyrica. I was placed on it 10 years ago when it first came out. First time a military doc ever prescribed it. I get auditory and visual hallucinations and EPS with most drugs. No I am not psychotic or have schizophrenia. But these are called “psychotropic drugs” for a reason.

    I had taken 75 mg Lyrica for 5 days. On the sixth day I called into work “ill.” I waited until my husband left for work then planned to take the few sleeping pills and pain pills I had. Gathered up duct tape and a dry cleaner’s plastic bag and figured as soon as I got sleepy, I would duct tape the bag around my head and suffocate.
    Then it hit me “What am I doing??” I researched the original clinical study and found that 2% of patients had the SAME action I did! (Some bought guns, others wrote wills and suicide notes and planned on running their cars into a concrete pillar, etc). I went online and filled out the Adverse Reaction report and sent it to the FDA.

    So NOW that warning appears in all TV and magazine ads for Lyrica.

    So all of you having severe reactions go online–just Google “Adverse Drug reaction” sheets, fill them out and “send.” Unless we say something the docs and the pharma industries just live in isolation.

    • thank you for speaking out. Means a ton even after 14 years of being with diagnosed with FM, Chronic pain, fatigue syndrome. What are symptoms of them all? similar I am assuming and some just pick one and go with. All levels to everyone’s pain. I am extreme but in the end… I had a brain tumor and almost died because I was treated for the color of my skin. Hate it’s extremely true. A dr treats me and I have pain management and it’s worked for 5 years. Nothing more or less. I have to work for insurance as i am picking back up to get to coaching and working in athletes. I am 40 and not young and was not around and I am building again. living in my car, raising a child. A few who don’t live with things, do not care if it’s going on. Where is my money????

  11. Carolyn J Spillman says:

    Sounds like a classic case of “We don’t really know how to help you since we still don’t know how this thing starts in a body, but it’s YOUR fault for not taking this mess of medications until we do know how to fix you.” That’s what I heard in my head from this article. If the treatments they want us to stick with WORKED hey, we’d probably all be thankful our doctors were so talented and stay on the suggestions, the meds that make us fat, more depressed or kills off our new neuron growth in our brains…..but they don’t! If these people who are running these very isolated studies would work together they might, and I’m really going out on a limb here…they might just figure this thing out…….

  12. Robert says:

    I am a male who has had fibromyalgia for more than six years now. Lyrica did not work for me, so I switched to gavapentin along with cymbalta. I don’t get much relief, but before I took them I was completely bedridden. The only thing that works is oxy codone but the doctor does not want to prescribe it anymore, so it it impossible to get. I don’t know why under controlled environment it is not prescribed ? The abusers make it bad for the rest of us who suffer.
    Most of my problems are body ache, and feeling like when you I a fever. This happens ever day. My state is going to start cannabis treatment centers in the fall, and I plan to sign up.
    I read a lot of women who must cope with figromyalgia but are there many men out there who suffer like I do.
    I’d like to hear your stories.
    Thanks,
    Robert

    • Christopher Haskins says:

      Yes, Robert, there are a lot of men with fibro. I’ve had it for over 20 years; I’m 58 now. Tried all kinds of meds, was accused by one doctor as ‘not wanting to get better’ when I didn’t magically respond to the medications. The side effects were far worse than the problem at times. I finally was put on Fentanyl patches (25mcg)12 years ago.

      My current doctor convinced me to try “savella’, which has turned out to be a good choice. My overall pain levels dropped by about 50%. Now, I’m weening off the Fentanyl to see if I need that kind of medication still.

      Life still hurts, and I expect it to. If I take enough medication to stop the pain, then my mind is affected, and I can’t tolerate that. My goal has been to keep use just enough pain medication so I stay married to my wife of 38 years… Most of my pain relief comes from ‘distraction’ — if you keep your mind busy enough, you can actually keep the pain in the background for a while.

      I’ve written a couple of articles for “The Mighty”, you are welcome to read them if you’d like: https://themighty.com/author/haskins/

      Hang in there, you definitely are not alone…

      Christopher

      • Michael Scherer says:

        Had fibromyalgia for 15 years and continues to get worse. I am a 64 year old male and have just about given up. Tried everything.

  13. Loraine says:

    Why stay on a drug that only gives you numerous side effects and does not help the problem. We may have fibro but that hasn’t affected our intelligence!!

    • Shari says:

      I completely agree, Betsy! The prescriptions are rarely being prescribed by doctors who really try to communicate and help the patient, it’s more “idk, try this med, if it doesn’t work, double the dose, if it still doesn’t work, you haven’t been on it long enough, if it still doesn’t work – then we’re just being non-cooperative and attention seeking. The drugs being prescribed are a shot in the dark for the physician and we, the patients get tired of being shot at with meds that just make other symptoms worse.
      I personally have been on 3 of my meds consistently for over 8 years but I have had to drop a couple others that didn’t work for me. Right now I have a gastroenterologist trying to get me to take Gabapentin for neck pain she was convinced was the problem with my swallowing and digestive issues. Even after testing came back with legitimate reasons for the symptoms in my esophagus, including one that raises my chances for cancer, she just told me to “just keep taking the Gabapentin”, even though I had told everyone I wasn’t comfortable taking it. Doctors don’t know what to think or do about fm so they throw prescriptions at us. When they don’t work, it becomes our fault and they wash their hands of us unless we’re willing to do exactly as they say AND GET BETTER! If we don’t get better, all bets are off.

  14. Mary-Carol Schley says:

    I agree with everyone but I believe that I know what causes fibromyalgia. I will continue telling everybody that it is an allergy. I am allergic to formaldehyde which is in almost everything. I figured this out a few weeks ago, but I am not sure anybody believes me. I took prednisone for a week and most of my body pain was gone. I did not test positive to a patch test for formaldehyde allergy because I was told that I could not sweat while the patch was on. However, I already knew that moisture is what activates the formaldehyde. Please check this out for yourself. Doctors are not going to help you. By the way, I have had fibromyalgia for over 20 years.

    • Jeanne Ann says:

      So the prednisone got rid of most of your body pain. Prednisone is often used for polymyalgia which is very different from FM. It is a type of rheumatic disorder. Have you been tested for that? Are you still taking prednisone? If not, why did you discontinue? Thanks! Gentle hugs to you. <3

    • Audrey says:

      Prednisone is often prescribed to try to break the pain cycle. Keep a journal of your symptoms in case they do start to come back. Gentle hugs.

  15. Karen Mueckl says:

    I have suffered from FM for over 40 years. My symptoms (generalized pain) started in my late teens. Wasn’t “diagnosed” till early 30’s. This (condition or whatever they are calling it these days) has all but destroyed me, physically and mentally. I, like all of you, continue to search for answers.
    Sadly, not much in the way of meaningful research going on. Anyhow…my question is this. I am a baby boomer. My mother had miscarried before she became pregnant with me. During the years 1938 – 1971, expected mothers who had previously miscarried were often given the drug Diethystilbestrol (DES) to prevent miscarriages and avoid other pregnancy problems. This drug is now known to cause mutiple problems in DES sons and daughters. (You would have to look it up). DO ANY OF YOU KNOW IF YOU ARE OR COULD HAVE BEEN A “DES” SON OR DAUGHTER?? I know this question had been researched over a decade ago, but didn’t seem to go anywhere. I am very curious about this.

  16. Mickey Nice says:

    Tramadol is a synthetic opiate. Quite mild. It is the only drug that has worked for me. It is not very addictive I was told. There are no high sensations. My doctor was okay with it. Maybe exercise works for some but if one also has chronic fatigue look out.

  17. Margaret Anne says:

    I was diagnosed initially with ME then Chronic Fatigue and eventually Fibromyalgia and almost at the same time with Sjogrens Syndrome in the mid 80’s. The combination of the two goes together according to research from John Hopkins and other reach I’ve read. Much more info available in the US – I live in Australia. It’s a case with the doctors I’ve seen – you look OK so it’s all in your mind, and I’m sick to death of it. I’m having to wait 6 moths to see a rheumatologist who studies both FM and SS. I also have very bad vertigo, severe tinnitus, headaches, nausea and at times vomiting which is even more debilitating. It was suggested by a hearing specialist, physiotherapist and other doctors that I have Meniere’s but my GP just looked at me and said “you don’t have it” – really? Funny that I have all the symptoms and have had it for almost 30 years – the tinnitus in both ears without stopping – in 30 years!! I’ve taken so many types of painkillers but Tramadol and Endone are the only thing that comes anywhere near even making the pain subside a small amount. Now GP won’t prescribe either so have no pain relief at all. I’ve been on Lyrica for several years and it did help a bit, but it made the tinnitus worse plus it affected my memory so badly I couldn’t think straight, so I stopped taking it a month ago. My marriage broke up and now at 72 I struggle from day to day. I’m now in the process of looking at moving closer to my daughter as I live in a regional area and not being able to drive quite frequently, I have to do something. It makes me so mad to be told by someone who very obviously has never suffered from any of the symptoms we have, that you just have to learn not to hear the tinnitus, or you can control the pain without taking pain killers. Oh and of course it’s just plain anxiety……..yeh, that too!

    • Mary-Carol Schley says:

      I am so sorrythat you are going through all this. I also have suffered from fibromyalgia most of my life.
      I know this sounds ridiculous, but I really believe it is caused by an allergy. If you can get your doctor to give you a prescription for prednisone for just a week or two, please try it. It made so much of my pain go away. However, it has one back now. My allergy is formaldehyde.
      I hope you can get some relief

      • Margaret Anne says:

        Hi Mary-Carol – thank you for your comment and suggestions. One of my allergies is formaldehyde too – terrible stuff as it’s everywhere! I’ve decided to get a second opinion as my GP is not doing anything to help – have been with her for too long and she just says it’s anxiety. Prednisone works really well for me but she won’t give it to me! She says it has nothing to do with SS or fibro. It was suggested I had Lyme disease when I lived in Maryland, USA (where it initially started) in the 80’s but of course not recognised here.

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