We are pleased to welcome Wael Jarjour, MD. Dr. Jarjour is associate professor and director of the division of rheumatology and immunology at Ohio State University. His research is focused on autoimmunity, and his clinical practice includes dermatomyositis, polymyositis, lupus, mixed connective tissue disease, and other systemic autoimmune disorders. Dr. Jarjour also serves on TMA's Medical Advisory Board and will speak on medications and myositis at the TMA Annual Patient Conference in San Diego in September. Today Dr. Jarjour will respond to members' questions about how to deal with the constant pain that often accompanies myositis. Thank you for joining us today, Dr. Wael Jarjour.Ask a Question
If muscle pain/discomfort/weakness can be attributable to fascilitis and not myositis what kinds of interventions might alleviate that pain and inflammation in DM and PM patients? Specific exercises? Certain physical therapy techniques (such as fascial counterstrain)? Particular drugs?Wael Jarjour, MD:
It is difficult to specifically address your question since most studies explore the therapeutic effects of various regimens without specific determination of fascia inflammation as a criteria of entry into a clinical trial.
What sort of imaging techniques are best able to assess autoimmunity disease progression/inflammation? Ideally how often should a PM or a DM patient get scans of key muscle groups? Is there any correlation between detectable inflammation, cellular infiltration, and/or vasculitis and patient-reported muscle pain/soreness/stiffness?Wael Jarjour, MD:
The most important way to determine whether a specific test is needed is through a close follow-up with a specialist that manages patients with myositis. History and physical exam provide critical information that helps determine what test to obtain. Regarding imaging, MRI is very helpful and can assist in the decision making process. There is no specific consensus regarding the frequency of such studies, and the best way to make the determination is based on the above. Yes, there is reasonable data that suggest that MRI can be very valuable tool in determining disease activity as a part of a complete evaluation.
Myositis Autoantibody Status and MyalgiaParticipant:
Is there any correlation between a patient's myositis autoantibody status (ex. anti-Mi2 vs. Jo-1 vs. TIF1 gamma) and patient-reported myalgia? Do amyopathic or hypomyopathic DM patients ever report muscle pain?Wael Jarjour, MD:
Unfortunately, at this time it is hard to give a definitive answer to your question, but studies that include patient-reported outcomes can help address these question in the future.
I have constant pain in shoulder and hip joints along with pain in small joints of hands and feet, despite being on 30 mg methotrexate weekly for the last 18 months. Will it improve with IV rituximab therapy?Wael Jarjour, MD:
It depends on the cause of the pain. If there is continued evidence that there is an active inflammatory process, then additional immunosuppressive or immune modulatory therapy would be appropriate. Rituximab may be a useful treatment in some patients with myositis, however the evidence supporting its wide use in myositis is lacking.
Fascia Inflammation and Muscle PainParticipant:
What are your thoughts about the recently described link between fascia inflammation and muscle pain (myalgia) in DM patients in particular (even in cases where there is no obvious myositis)? One theory is that the fascia is a target organ of inflammation.Wael Jarjour, MD:
The fascia is a sheet of connective tissue, primarily collagen, that separates muscle tissue. Inflammation in the fascia can be an important part of the disease in patients with DM. We have become more aware of this since we have begun using MRI in the last decade to image the muscle and fascia. Additional studies would likely need to be made to prove that fascia inflammation is the cause of pain in DM exclusively.
Hello Dr. Jarjour. I was diagnosed with DM last July. My main symptoms were muscle weakness, rashes, and shortness of breath. Pain was never a major issue. At what stage will the pain start? Am I going to have pain?Wael Jarjour, MD:
Hopefully never! A majority of patients with DM have no pain.
Balancing Pain Medication with PrednisoneParticipant:
Hello Dr. Jarjour. I have constant low grade pain all over (muscle aches all over arms and legs, arms and feet; joint aches; tingling sensations in hands and feet). I feel okay on prednisone 9-10mg, but under that dose the pain is harder to bear, and life becomes unbearable on prednisone 5mg. Is it better to take a pain medication such as Lyrica/Cymbalta and reduce the prednisone to 5mg, or is it better to stick with prednisone 9 and take no pain medication?Wael Jarjour, MD:
The fact that prednisone helps your symptoms raises the possibility that your DM may not be in complete remission. I would recommend that you talk to the specialist that is treating your DM to confirm that they agree with this assessment and with adding immunosuppressive medication (or modify the medication you are currently on other than prednisone) in order to control your disease better. This should facilitate tapering of the prednisone. Additionally, the symptoms of numbness and tingling suggest that you may be developing a neuropathy. This will require an additional work up to establish a diagnosis and also determine the cause.
Medications like Tylenol or Advil do not touch my DM pain (constant in arms and legs), but a medicine like tramadol made me so loopy I couldn't drive and I need to work. Is there anything else?Wael Jarjour, MD:
It depends on the cause of the muscle pain. If the pain is directly related to active disease, then more immunosuppressive medication is needed. If the pain is from another cause, then as discussed in my introductory remarks treatment will be different.
Pain at NightParticipant:
Why is most of my pain at night?Wael Jarjour, MD:
There are certain conditions that cause more discomfort at the end of the day. However, if the pain is specifically present at night, and only at night, that raises the possibility of a sleep disorder contributing to your symptoms. As discussed in my introductory remarks, a thorough evaluation of the cause would be needed.
Pain During RemissionParticipant:
Dear Dr. Jarjour, Can polymyositis or ulcerative colitis cause muscular and joint pain even though they both are in remission currently? Or do you think it is worth investigating if there is anything else in the background in addition?Wael Jarjour, MD:
I think an evaluation of the cause of the pain is needed in order to address it specifically. There are patients who have inflammation in their joints when the bowel symptoms from ulcerative colitis are quiescent, but these patient usually do not have muscle pain but do have joint pain. It is not uncommon for patients to have more than one autoimmune disease and also a family history of autoimmune disease.
Systemic Autoimmune Disease IndicationsParticipant:
Dear Dr Jarjour, I have multiple autoimmune and inflammatory diseases (polymyositis, hashimoto's thyroiditis, ulcerative colitis, chronic fatigue syndrome, parasomnia), but each are treated as separate health conditions.
My question is: can these indicate a systemic autoimmune disease in the background? I have fluctuating anti-DNA and anti-ANA antibodies, never really staying positive long enough to be diagnosed with lupus, but it makes me wonder if actually there is one systemic disease showing its face in different parts of my body from time to time instead of having separate conditions. Would it matter in terms of treatment regime though?Wael Jarjour, MD:
Many autoimmune diseases that affect the muscles are systemic diseases, but there are patients who have multiple autoimmune diseases present at the same time. Establishing the different diagnoses may be helpful in developing a specific treatment strategy.
I am a 62-year-old woman with dermatomyositis. I've done well with IVIg monthly over 18 months. My strength and fatigue is normal now, but I continue to wake at night with my legs (thighs) aching and needing to stretch. After stretching, walking to the bathroom, I'm usually better, but it wakes me every 2-3 hours. I find this is worse if I have gone for a walk or ridden a bicycle the day before. When I look back over past five years before diagnosis, I believe the leg pain and fatigue was an early symptom.
Is the night pain I experience a residual of the muscle implications before I was treated? It is disruptive to my sleep and often leaves me feeling tired and achy and in dire need of stretching, in the morning. My doctors have been unable to offer an explanation, and in fact claim that myositis is not usually painful, which leaves me feeling like he doesn't believe me or thinks it's of no consequence.Wael Jarjour, MD:
Without testing it is difficult to be certain, but your symptoms at night raise the possibly that you may have a sleep disorder that could be causing these symptoms. I would suggest that you discuss with your primary care physician and your specialist about the possibility of doing a sleep study. If you are having cramps, additional evaluation may be needed.
Pain in Hips and LegsParticipant:
I have antisynthese syndrome (PM and ILD) and get bad pain in my hips and back of legs. What do you recommend for pain relief? I have tried Aleve and tramadol to no avail. Thank you.Wael Jarjour, MD:
It depends on the specific cause of the pain, as discussed in the introductory remarks. However, if your current pain is from active myositis, then a change in your immunosuppressive regimen is needed.
Hi Dr. I have two questions. First, in your opinion is it better to take less prednisone and more ibuprofen to control pain or to stay on a low dose of prednisone and use less or no ibuprofen? And second, have you found that people have a specific muscle or spot that is painful, or is it a more generalized feeling of discomfort/pain throughout the body? Thanks for your time.Wael Jarjour, MD:
If your pain is from inflammation, it is much better to take prednisone because it suppresses your immune system and can help control the myositis. However, prednisone has significant side effects, therefore, if the pain is not related to inflammation from your myositis, ibuprofen might be appropriate. Always discuss with you specialist to know the specific reason to use these medications, because all medications have risks.
Patients with pain from myositis usually have generalized pain, however in some cases—for example, a calcium deposit—a can have localized pain. Having localized pain without generalized pain may have other causes and would need to be evaluated.
Dull Evening PainParticipant:
I have dermatomyositis. Each evening around 5:00 pm my body begins to ache and feel very uncomfortable. This strong discomfort lasts through the evening. It is not a sharp pain but hurts all over. Is this typical with others having my condition?Wael Jarjour, MD:
As I mentioned in my introductory remarks, it is important to determine the cause of the pain. However, based on the way you describe the symptoms it is possible that, because of your disease, your muscles are deconditioned and you are unable to tolerate activity as you did prior to your illness. A supervised exercise program may be helpful, and I would recommend that you speak to your specialist about this.
Do you have any comments on using ibuprofen regularly to treat low-grade muscular pain in light of the recent British Medical Journal article on links between NSAIDs and increased risk of heart attacks?Wael Jarjour, MD:
All medicines have risks. The cardiovascular risk associated with this type of medication is relatively small. The main question that needs to be addressed in discussion with your specialist is, is this the best medicine for what is causing your pain?
Pregnancy with Autoimmune DisordersParticipant:
Dear Dr. Jarjour, What are the chances of having a healthy baby (with no autoimmune disorders) when the mother has multiple autoimmune diseases (polymyositis, hashimoto's thyroiditis, ulcerative colitis, chronic fatigue syndrome, parasomnia)?Wael Jarjour, MD:
This a very important but difficult question to answer, because if you have multiple diagnoses, it is very unlikely that there is any specific data that addresses the risk. There is also the risk associated with medication that may be very harmful in pregnancy. I suggest that you work with your myositis specialist to make sure that it is okay for you to become pregnant, which includes a thorough evaluation and assessment that the disease is not very active. Also, an evaluation by a high risk obstetrician would be extremely helpful.
Coincidence or Medication Change?Participant:
Hi. Thanks for addressing this nagging problem. I was diagnosed with DM in 2005. I had fairly constant pain in my back, hips, legs, and feet until a year and a half ago. In 2015, my liver tests showed I needed a change in my medicine, so I was put on Cellcept. This did nothing for my pain levels. In 2016 I was put on IVIg, because I had gotten pretty sick with the flu, and my IgG levels were low. With the addition of IVIg, my horrible daily aches have subsided. So my questions are, is this reduction of pain just a coincidence and I'm just lucky this is workings for my case, or is this an approach that is used to control pain?Wael Jarjour, MD:
It is difficult to say with certainty, but the fact that your pain improved after a change in immunemodulatory treatment suggests the possibility that your DM was not in complete remission in spite of Cellcept, a drug that is often effective in treating myositis. The fact that your pain resolved with IVIg confirms what is widely accepted, that IVIg is also an effective medication in DM.
DM Muscular Pain MedicationParticipant:
Hello Dr. Jarjour. I was finally diagnosed with DM in 3/16 after six years of worsening symptoms. I have failed to improve on multiple immunosuppressive agents and am currently taking azathioprine and a higher dose of prednisone in hopes of reducing inflammation and improving worsening weakness. I have constant pain in my thighs, calves, and biceps. For this I have taken as much as 2400 mg of gabapentin. This helped at first but is not alleviating my pain anymore (and may actually be causing memory problems!). My neuromuscular doctor has me weaning off the gabapentin. In place of it, I will begin Cymbalta, pending insurance approval. What do you think of this med for DM muscular pain? Would you have any other recommendation?Wael Jarjour, MD:
Based on the treatment that you are being prescribed, it appears that your specialist attributes at least some of your symptoms to neuropathic pain, such as seen in fibromyalgia. If the evaluation has determined that fibromyalgia is the cause of your symptoms, Cymbalta may be a reasonable drug, in addition to a supervised exercise program.
Hello Dr Jarjour. I live in Washington state and am having a horrible time getting an accurate diagnosis. I have an elevated ANA as well as a weak positive PM/SCL. Some doctors say I have fibromyalgia, while others say I don't. I don't have painful pressure points, but I do have muscle aches throughout my body. Also, I just found out I need two new knees and have a huge calcium deposit in my shoulder. I am only 55 years old, and it seems like I am progressing downhill quickly without a diagnosis. Is it unreasonable to consider traveling to someplace like John Hopkins to get a thorough work up so I can possibly know what I have?Wael Jarjour, MD:
The various tests that you mentioned are unfortunately not very specific. While a positive ANA and a positive PM/SCL are helpful, they are not diagnostic. A calcium deposit in the shoulder can be seen in DM, however the details of the findings determines whether it is suggestive of DM or not.
It is very critical to have a diagnosis, as you point out, and having an evaluation at a university, such as John Hopkins, where they frequently evaluate patients with myositis, can be very helpful.
Thank you Dr. Wael Jarjour for taking time out of your busy schedule to answer questions for TMA members. This concludes today's discussion. Thanks to all of the members who participated.Wael Jarjour, MD:
Thank you for having me.