Question: I'm feeling really down and am on my 5th week on Cymbalta (60mg). I think it is changing my mood but it is not helping my pain. I feel no one cares or wants to listen and even i notice my husband is sick of it. I try my best but with leg pain, headaches and feeling drained it is hard to be happy. I am just surprised how downhill my MS is going and wonder is it my meds or because my meds are not working??
Answer: Thank you very much for your question. The first thing to keep in mind to help frame how you approach this is to recognize that mood symptoms, and depression and anxiety in particular, are very commonly experienced in MS and are much more prevalent than in the general population. The second thing to keep in mind is that they are very treatable using medications counseling, and/or behavioral medicine (non medication approaches that can have a medication like effect) treatments. Sometimes these symptoms represent a form a depressive or anxiety disorder, and other times they are secondary to other things, like adjusting to a new MS diagnosis, a new life event (positive or negative), other symptoms (like pain, headaches, cognitive problems, or new MS symptoms, etc.). In your case it sounds like you are dealing with pain, headaches and fatigue in addition to the mood symptoms and that the medication you are currently taking, duloxetine (cymbalta) 60mg daily, is not helping after 5 weeks on treatment. I have a few recommendations which I hope will help and give you some additional options to think about.
1) Duloxetine (cymbalta): Antidepressants reach full effect within 4-6 weeks of starting treatment. Lack of effect at 5 weeks is a good signal to congtact your prescriber and discuss options. It could be that further adjustment of the dose is needed (higher doses of duloxetine are often used in psychiatry and also for headache and pain management even though the usual maximum dose is 60mg daily), or that a different antidepressant is needed (it is not uncommon to need to try 2 or more antidepressant trials to find the "right" one). It will also be helpful (I think) for you to further assess the type of headaches and pain that is present. Duloxetine can help with certain types of pain (especially neurogenic pain) but less so with others and often needs to be supplemented (or replaced) with other treatments. Same thing with the headaches. Duloxetine helps more with certain types of headaches and less so with others, and may also need to be supplemented (or replaced) with other treatments. Finally, ruling out that your treatment resistant symptoms are due to a MS exacerbation is also important. All of these considerations suggest that you talk with your providers for further assessment, guidance, and treatment planning at this time. Depending on your situation, referrals to a pain specialist, a headache specialist, or both may be needed (but not always, often can be managed by your PCP and neurology specialists).
2) Effects of Fatigue: Fatigue can be a product of pain and also of MS, and can likewise reduce the pain threshold (how much pain you can tolerate) and worsen mood symptoms. In the warmer summer months, heat (if you are heat sensitive) can exacerbate fatigue as well. Practicing energy conservation and heat management techniques (including using cooling equipment when outdoors if needed) can help you keep the energy you have in the tank and to use it most effectively. Doing so can minimize the effect fatigue has on other symptoms. Self-monitor a bit to see if you notice worsening of pain and headaches and mood symptoms when you are more tired and if there is a daily pattern of this. If so, there may be a fatigue effect involved. A review of your medication list with your provider can also help to see if other medications you are on may be contributing to fatigue, headaches, or both (duloxetine is not know to commonly cause either).
3) Self-Monitoring for Depression: Feeling down is never much fun but it could be worse, and it is important to watch for signs that it may be worsening. Losing interest in things you used to like to do (decreased motivation), decreased ability to enjoy pleasurable activities (anhedonia), increased isolation, decreased appetite for food or intimacy, difficulty with concentration (more than usual), difficulty sleeping, and thoughts of self-harm are all indicators that depressive symptoms are worsening and suggest that you should contact your provider for follow up immediately. From your message I cannot tell if you are experiencing any of these things or just feeling down. That being said, in mental health care, as well as in general health care, prevention and early treatment is often better than waiting for things to get worse. Best to try and get your current symptoms better treated so they will not worsen. But while you are working on that, keep these other things in mind to watch for as they can indicate worsening.
4) Non-medication options: Medicines are just one of many options that can help with treating mood symptoms and pain. Non-medication options can often be used instead of medicines and are commonly used in combination with medicines for mental health and pain management. Counseling can be very effective (especially if working with a counselor with experience helping people with chronic illness, I recommend cognitive-behavioral-therapy or CBT based approaches), especially in situations where difficult life situations are involved, relationships are involved, and/or if you are wrestling with difficult decisions or trying hard to adapt to a chronic health condition (like MS). Oftentimes, counseling can have a faster onset of action than medication, especially if you have weekly counseling sessions. Behavioral medicine approaches such as meditation, yoga, tai chi, progressive muscle relaxation, guided imagery, exercise (yes, general exercise), sleep hygiene, and others can also help. A basic exercise plan (even getting outdoors and walking daily is a good start) will do wonders. Add a daily pleasurable activity such as a hobby, etc. (even if just for 30 minutes) can also have a good effect (do it even if you don't feel like it, over time it will have a countering effect to the depressive symptoms). Talk about these options with your providers to see which ones might be best for you. Sometimes there can be a wait to start counseling (if you choose that option), but the good news is that there are many self-help options available that are actually quite effective and can be combined with traditional counseling approaches. Two sources that have been really helpful for the people I have treated as a MS mental health specialist include The Relaxation and Stress Reduction Workbook and The Stress and Mood Management Program for Individuals With Multiple Sclerosis: Workbook. Both of them are very user friendly, less than $20, and do not take a pile of reading to get results.
I hope that this is helpful. I think you are right on target to be concerned about your current symptoms and that your instinct is good to want to think about other options. I hope the above is helpful for you as you think on your options and also for your discussions with your providers. Best wishes :)
BRANT J. OLIVER, PhD, MS, MPH, APRN-BC
Assistant Professor, School of Nursing, MGH Institute of Health Professions, Boston, MA
Adjunct Assistant Professor, The Dartmouth Institute and Departments of Community & Family Medicine and Psychiatry, Geisel School of Medicine at Dartmouth, Hanover, NH
Faculty Senior Scholar, Dept. of Veterans Affairs National Quality Scholars (VAQS) Fellowship Program, White River Junction, VT
Faculty Nurse Scientist, Yvonne L. Munn Center for Nursing Research, Massachusetts General Hospital, Boston, MA
Neurobehavioral Specialist, Multiple Sclerosis Specialty Care Program, Concord Hospital, Concord, NH
Board Certified Nurse Practitioner (APRN-BC): Family Practice (FNP-BC) and Psychiatry (PMHNP-BC)
Here is My Question:
I'm thinking of stopping Copaxone. I'm considering not doing anything, quite frankly. Is it always necessary to treat MS? I'm just quite tired of the lack of caring on the doctor's part and taking the injections. My issues are mostly cognitive. I'm so depressed, I just want to quit. Maybe if I could stop thinking about the whole thing, I would feel better! Again, does one ALWAYS have to go on a DMD? I can't take Rebif, Gilenya and I hate the bumps from Copaxone.
You have a lot of company when it comes to being tired of giving yourself injections and wondering whether you need to be on a disease modifying therapy at all. The most common reason for stopping long term injectable DMTs is "injection fatigue” combined with depression. Nothing is more important that treating your depression. In order to effectively manage your MS using DMTs (assuming they are warranted in your case) your doctors must help you with your depression and your outlook. Let me also be clear that this is a group effort; your doctors may or may not be able to prescribe effective anti-depressants and help you find a good therapist (both important); you must also take responsibility for improving your mental health and outlook. This may involve exercising more regularly, eating better, stopping smoking or using unnecessary drugs, reengaging in activities of interest to you and reconnecting with people in and outside of your family.
To answer your question more directly, not everyone needs to be on a disease modifying therapy, although I have no idea if this statement applies to you. What I do know is that everyone needs to work on enhancing their own innate "self efficacy" (see prior Blogs) so they have the tools to deal with MS over time or any vicissitude of life.
Good luck to you
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego
Here is My Question:
Emotionally draining??? Am I the only one that feels exhausted by my MS? The feeling of no one understanding me or my husband telling me I keep talking about my MS and for my own sake it would be healthy to just let it go......this is true but at the same time I feel very isolated with this unknown disease. Are these normal feelings that come with MS???
People with MS often feel that their loved ones do not understand what it is like to live with MS. They forget that before MS became part of their lives, they didn’t understand it either. We turn to those who are closest for support and encouragement, but there are times that we need to talk to someone who really ‘gets MS.’ The people who ‘get’ MS best are other people who have MS, and contact with them can reduce feelings of isolation. They can be found in in-person support groups, offered by your local chapter of the National MS Society http://www.nationalmssociety.org/ and on-line support chats, such as those offered by MS World http://www.msworld.org/
MS can be very hard on couples’ relationships. It’s hard to find the balance between not discussing MS, or discussing nothing else but MS. Couples with MS are challenged to simultaneously change according to the demands of life with a chronic illness, while staying the same, preserving the qualities and shared values that brought you together in the first place. Counseling for couples living with MS can be very useful: http://www.nationalmssociety.org/NationalMSSociety/media/Mid-America/Stay%20Informed/MS-Connection-Summer-0529.pdf (on page two there are tips for finding a couples counselor)
David Rintell, Ed. D.
Psychologist, Partners MS Center
Brigham & Women's Hospital
Here is another answer in response to your question:
You are definitely not alone. There are many people with MS who feel emotionally drained and isolated. The way people react to chronic disease varies from person to person and also changes over the course of the illness. Often these responses, and the responses of those around you, are not particularly helpful and leave individuals more stressed and emotionally drained.
To be more successful, and this is a process that is continual, you need to find balance and work on enhancing your innate self-efficacy. Self efficacy, as I have written previously, is the perceived belief that an action with achieve an outcome and that you are capable of persisting with this action to achieve this outcome. To quote directly from my previous blog there are several steps required to enhance your self efficacy:
People who are healthy or experiencing chronic diseases often require help in achieving these steps, whether that occurs through social networking groups or groups lead by health care professionals (psychologists and social workers usually). Remember, this is a process to help you achieve better outcomes throughout your life. Begin by talking to your doctor and consider getting a referral to a health psychologist. These individuals help you with a process called cognitive behavior therapy designed to essentially help you with the steps outlined above.
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego
Here is My Question:
I was told and read that Rebif had a huge problem with people who have mental disorders and can and has caused people to commit suicide. Is this true?
The relationship between interferon treatment of MS and depression has been a controversial subject for 20 years. Considered as a class, the Beta Interferons used to treat MS (Avonex, Betaseron, Extavia and Rebif) have been variably associated with a minimal increase in the risk of self reported depression when blinded interferon treated patients are compared to placebo treated patients in clinical trials. There is also very little evidence that interferon treatment of MS patients with current or prior depression worsens depression or causes a recurrence of depression.
David Mohr’s study from many years ago clearly identified current depression as a major cause of interferon discontinuation or poor adherence to therapy; improved adherence to interferon therapy in depressed patients was achieved through early identification and treatment of the depression. To help identify patients at risk for depression, some studies have suggested that people with MS who are younger and with higher levels of disability, particularly women, are more prone to depression.
Suicides have also been reported in interferon treated patients; in fact, there were three suicides in one of the interferon studies involving secondary progressive MS patients. Overall, there does not appear to be an increased risk of suicide, however, in interferon treated patients compared to control treated patients.
Identifying additional factors responsible for depression in people with MS is difficult given the extremely high prevalence of depression in MS. Nearly two thirds of MS patients will experience evidence of depression during the course of their illness; this often occurs early in the course of the illness when the same individuals are often initiating therapies such as interferons. Because of the similarity between early interferon associated side effects (increased fatigue, cognitive blunting, general aches and malaise, disrupted sleep, loss of appetite) and some symptoms of depression, it is important to monitor patients closely for the emergence of depression, particularly during the first 6 months of treatment. I do not avoid interferon use in patients with prior or current depression, but I start treatment for depression before starting interferon in those patients who’s depression is untreated, and monitor the treated patients more closely. Difficulty adhering to therapy is one clue that the patient may have underlying depression. Since this may also affect adherence to other therapies, these individuals should be evaluated for depression or anxiety disorders and, if found, treated with either psychotherapy or antidepressant medications or both.
Here is My Question:
Why did I have severe problems switching to 40 mg Copaxone? I have been on the 20 mg for 14 years. On the 40 mg I have had loss of appetite, mood swings, sleep problems and have felt so unwell. I saw another woman reported the same problems. How long should I wait to make the switch back? I was on the 40 mg for 6 weeks before things went south. Thanks for any feedback.
I am sorry to hear about the problems you’ve experienced since you switched to the new formulation of Copaxone. To my knowledge loss of appetite, mood swings, sleep disruption and generally feeling ill on a daily basis would not be problems related to Copaxone. These are all common symptoms of depression which by itself is very common in people with MS. There are other possibilities as well that only your doctor, who has an intimate knowledge of your case, can assess adequately. You should discuss these symptoms with your doctor as soon as possible to get you on the road to recovery. Good luck.
Rip Kinkel, MD
Question: My PCP provider says I'm depressed. I've been living with MS for 18 yrs. I know what my body is going through. Is their any help for me? Am I too old to correct anything?
Answer: It is never too old to correct anything, although our options and goals do change as we get older. Depression is a common response to chronic illness and may even be an intrinsic part of MS. I have written several blogs on this subject including one on self efficacy (Please read http://www.healthcarejourney.com/4/post/2014/01/self-efficacy-and-multiple-sclerosis.html)
It is not uncommon for people with MS to receive a diagnosis of depression followed by a prescription for an anti depressant; but the cure can not stop at this point. You must take an active role in your healthcare; effective management of depression requires an exercise program, increased socialization, cognitive behavioral therapy and most importantly a sense that you have some control over your path. Talk about this with your doctor and see if he or she can help you find resources to help with your journey.
Question: I want to do everything I can to increase my chances of being as well as I can with MS. I take medications prescribed by my neurologist, exercise as much as I can (4x40 minutes/week), eat low fat & low sugar, tons of fish, fruit and vegetables, take vitamin D and meditate. Is there anything more I should do?
Answer: All of the things you are doing to treat your MS will potentially benefit you in the long run, but there is one thing you failed to mention; are you happy? Happiness is an elusive concept but extremely important to your relationships, health and longevity. The ability to be happy comes naturally to some and requires much more work for others; it is not related to wealth, once basic needs are met, or even to the presence of a normal state of health. And yet achieving happiness and contentment will do as much for your health as most other medical remedies. As a primer I would recommend the following. First, rent the 2011 documentary movie Happy to give you some things to think about. If you prefer a really good drama that explores the search for happiness in a sometimes cruel world, I would also recommend, The Unbearable Lightness of Being (beware of adult content). Last but not least, pick up Daniel Gilbert’s book called, Stumbling on Happiness. It is really a must read. And no matter what you are thinking at this moment, do not dismiss the importance of working on happiness as a key treatment for your MS. Good luck.
People often ask me how to get their friends and family to follow their doctor’s recommendations and we, as doctors, often wonder if our patients, particularly those who come in alone for visits, are taking their medications as directed and following other non medicinal recommendations. There is an entire field of research devoted to this topic and some general recommendations that are useful. The most important thing to remember is that this is an ongoing process. Even if a person follows a recommendation initially this rarely lasts without persistent follow-up and attention to the process outlined in this blog.
Let’s first consider the concept of adherence and the process anyone goes through when making a decision. This will help you see where things can break down.
PLEASE NOTE: The information/opinions on this site should be used as an information resource only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.