Presenters: Sean O’Mahony MD, Bch, BAO, Rush University Medical Center; Mimi Mahon PhD, CRNP, FAAN, FPCN, National Institutes of Health Clinical Center
This is a video of a workshop presented at the 2019 National GVHD Patient Summit in Chicago.
30 minute presentation, followed by 30 minutes of Q&A
Patients with graft-versus-host disease can experience different types of pain, depending on which organ GVHD is affecting. Pain medications have limited effect, and their effectiveness varies from one person to another. A palliative care specialist can help patients develop a comprehensive pain management plan involving both medication and other treatment modalities.
- Chronic pain is common is patients with graft-versus-host disease (GVHD)
- Pain management should be multi-dimensional and include other professionals with different skill sets such as occupational therapists, physical therapists, social workers and psychologists
- Medications have a role in managing pain, but have limited benefit and side effects
- A palliative care specialist can help individualize a patient’s pain control program for maximum effect
03:36 Different types of pain required different types of treatment:
05:28 Pain is not just related to injury to a body structure. It involves pain perception and it's associated with suffering
06:04 Muscle cramps are common in patients with GVHD and can be controlled with stretching and medication
15:14 Common side effects of opioid medications include nausea, vomiting, constipation, drowsiness, problems with constipation and itch. Addiction is an uncommon side effect.
17:23 If you're using more than 50 to 100 mg of oral morphine equivalent per day, make sure that there's a prescription for naloxone available, and that your caregivers are aware of how to administer that medication.
21:46: Although many modalities like mindfulness, psychotherapy, acupuncture are evidence-based treatments for pain, they're often not covered by insurance or require big out of pocket expenses.
23:20 Acupuncture has been found to be effective in acute procedural pain as well as in chronic pain in the setting of cancer, such as peripheral neuropathy
24:30 As little as five minutes a day of mindfulness interventions may lessen the severity of chronic pain.
26:55 Talk to your healthcare provider before using medical marijuana to control pain:
29:39: There has been a limited research base in marijuana because the federal government has restricted access to researching marijuana
Transcript of Presentation
00:00 [moderator] Dr. Sean O'Mahony and Dr. Mimi Mahon. Dr. Sean O'Mahony is an associate professor of hospice and palliative medicine and director of palliative care with Rush University Medical Center. His research interest focuses on pain management, hospice and palliative care programs. Dr. Mahon is a nurse practitioner in pain and palliative care at the National Institute of Health. She previously worked at the University of Pennsylvania and other healthcare institutions. Please join me in welcoming Dr. O'Mahony.
00:37 [O’Mahony] Most medical students do not have intensive training on pain management: I'm going to talk about managing pain for patients with GVHD. Most of the patients that I take care of have chronic medical illnesses. We take care of patients in the context of when they're in the hospital having stem cell transplants and we also see out patients in the cancer center. There are many barriers to effective pain management, so surprisingly the majority of medical students in this country will not have had formal didactics on pain management.
We surveyed incoming medial house staff at Rush a few years back and found that 80% of them could not recollect having had a formal didactic on pain management at an undergraduate level. As a consequence of which we get all of the medicine interns for a week to teach them about pain.
Many providers have misconceptions about the risks of side effects of medications. We tend to underutilize the full complement of treatment resources. We're not aware of what other professionals can do, so the majority of physicians will not have had exposure to occupational therapy or physical therapy at an undergraduate level. Mimi, do nurse practitioners rotate with OTs or PTs?
[Mahon] Not traditionally.
[Mahon] I mean, it depends. Those who seek it as an elective can do it, but it's done [inaudible 00:02:11].
[O’Mahony] Okay. Serendipitously there is an occupational therapist who works in my clinic who's interested in chronic pain. And we make sure that all of the medicine interns will spend some time with the occupational therapist to learn about the modalities that they can provide. Many times physicians will not believe a patient, that the patient has chronic pain. And we're often not routinely using evidence based distress screens, which can elicit the presence and severity of many symptoms.
02:48 Healthcare providers are often not trained in supportive care for patients with a chronic disease: Not enough providers are trained in supportive care patients with chronic illnesses. Pharmacies will often not stock medications that may be effective for symptom relief. There are many restrictions on what medications or interventions a person can receive. And there are often restrictions on what type of care provider people can visit.
So many times a psychologist, or a social worker who can teach patients about mindfulness modalities, there are huge co-pays to see those providers, so it's outside the range of a patient to be able to see that provider when they've depleted their financial resources.
03:36 Different types of pain required different types of treatment: There are different types of pain, and there are different approaches to the different types of pain. So neuropathic pain is mediated by injury to a nerve. Non neuropathic pain can be somatic or pain involving bone structure or joint that's typical well localized. Visceral pain is pain mediated by an injury to an organ such as the intestine or the bladder.
Pain can be acute if it's limited to a period of one to three months or less. You can have recurrent acute pain where patients have bursts of pain for time limited periods. Or chronic pain, which is pain which has been present for one to three months.
04:27 Patients with neuropathic pain may describe their pain as being shock like, electrical. They may describe having pins or needles. They may have terrible itch in the area that is supplied by the injured nerve. It's often associated with change in skin sensitivity. So the skin may feel very sensitive or there may be loss of sensitivity. So patients with peripheral nerve injuries may find that when they're walking it feels like they're walking on cotton wool.
05:01 Somatic pain is typically well localized. Classically it might be in somebody who's got a bone lesion or injury to a joint. The pain is typically made worse by weight bearing or change of activity. Visceral pain is crampy. It's possibly associated with nausea, or urinary or gastrointestinal symptoms.
05:28 Pain is not just related to injury to a body structure. It involves pain perception and it's associated with suffering. So commonly patients with chronic pain will have depressed mood, and the depressed mood is made worse by the chronic pain. And the pain makes the depressed mood worse. Typically in acute pain patients will often have high levels of anxiety. So the approaches to cancer associated pain tends to be multidimensional.
06:04 Muscle cramps are common in patients with GVHD: One type of intervention is typically going to have limited efficacy. So people should be approached with a whole person approach. Commonly in GVHD people may experience muscle cramps. They're often not disclosed by the patient to their provider. It's often relieved by stretching. It occurs in slightly less than a fifth of the patients who have GVHD. Often occurs at rest. Often worst at night, but may be induced by exercise. Calf muscles are commonly involved, also the hamstrings. Hands, forearms and thorax, or the chest.
It often interferes with sleep. There can be difficulty with exercise and breathing during and after the painful contractions.
7:04 Medications and stretching can help with muscle cramps: Magnesium can help about two thirds of patients. Quinine helps less than half of patients. Quinine can cause things like dizziness, hearing loss or tinnitus or ringing in the ears.
You probably, if you've experienced this, been offered these medications earlier than you were offered the first couple of interventions. Related again to our lack of formalized education in this area. So Pregabalin, the brand name of which is Lyrica. Gabapentin, the brand name of which is Neurontin, and carbamazepine have lower response rates. You probably would not have been offered carbamazepine, because this anti-seizure medication will commonly reduce blood counts.
07:59 Muscle stretching is usually effective at stopping the cramps, except when the pain is severe.
08:07 Fasciitis is inflammation of the connective tissue beneath the skin. Poly-myositis is inflammation of multiple muscles. Poly-serositis is inflammation of tissues lining the internal organs or body wall tissue. So that might be inflammation of the pleura, which is the tissue that lines the lung. Arthralgias is the medical term for joint pain, and myalgias refers to muscle pain.
08:45 Pain in cutaneous sclerosis, or sclerosis of the skin may cause limitation of mobility over joints, as well as pain. It often responds to moist heat, paraffin, and ultrasound prior to stretching for 15 to 30 seconds, and should be repeated several times. Connective tissue scars that are forming can be reduced by topical treatments such as moist heat, emollients, massage, stretching, and the application of pressure.
09:19 Treatment for adhesion of scar tissue to deeper structures: Heat up to 113 degrees Fahrenheit improves the stretchability of collagen. Friction or deep friction massage is the primary method of preventing or treating the adhesion of scar tissue to deeper structures, but requires systemic control of GVHD, as mechanical irritation may lead to increased inflammation in uncontrolled GVHD.
09:52 People with fasciitis may describe a feeling of stone-like tightness with clearness of the overlying skin. Physicians tends to use a lot of fancy terms, so when my slides were being reviewed, I initially used lucidity, and struggled to come up with a plain English translation of that so that it would be readily understood. People may decide to do a biopsy or MRI to elicit diagnosis.
It's often progressive with marked impairment of Quality of Life with joint stiffness, reduced range of motion, sores, impaired wound healing, and shortness of breath. Physical therapy modalities are effective for this syndrome. So heat, joint mobilization, lymphatic drainage should be started early to reduce joint contractures or stiffness. But caution is needed in the early phase where there's a lot of swelling as inflammation may increase the mechanical irritation.
11:03 Mouth pain associated with oral GVHD: Oral GVHD. As you're all well aware it may be associated with mouth pain, ulceration, inflammation, sensitivity, limiting the ability to eat and drink, and causing marked impairment in quality of life. Helpful interventions alongside topical and intra-lesioned of steroids might include pilocarpine, topical antifungals, fluoride topical analgesics, things like magic mouthwash, containing local anesthetics and antihistamines and viscous lidocaine.
11:42 Vitamin D deficiency is common among patients with GI GVHD and can cause osteoporosis: Vitamin D deficiency is a common complication in patients who have had stem cell transplant. It's also associated with gastrointestinal GVHD. People with Vitamin D deficiency are more likely to have osteoporosis. Vitamin D deficiency is commonly associated with bone fractures and bone pain. So talk with your physician about supplementation.
12:11 Abdominal pain and cramping will occur in about 60% of patients with gastrointestinal GVHD. Other common symptoms include loss of appetite, diarrhea and weight loss.
12:25 Adjuvant medications are medications that have a primary indication for the treatment of conditions other than pain. So classically that might include an antidepressant for neuropathic pain, or an anti-seizure medication. For cancer neuropathic pain the most commonly used adjuvant medication is Gabapentin or Neurontin. About a third of patients will achieve 50% reduction in pain intensity for chronic neuropathic pain with Gabapentin. And this is a recurring theme with a lot of medications that have limited efficacy.
Other examples of medications that are used to treat depression that might be effective for pain include nortriptyline, amitriptyline or venlafaxine as well as local anesthetic medication such as topical local anesthetics such as eutectic mix of lidocaine and prilocaine patches or EMLA cream and dressing.
13:32 Narcotics are commonly used to control cancer pain: How many patients in the room are using narcotic medications or opioids? So a fair few. Opioid medications had been the mainstay of cancer pain until the last several years. They include medications such as oxycodone, morphine, fentanyl, hydromorphone. Approximately a third of patients with chronic pain will have effective relief of pain. More patients who have active cancer diagnosis will achieve fair control of their pain with limited side effects with opioid medications.
A similar proportion of patients to the one third of patients with chronic pain who achieve relief will discontinue opioid medications for a lack of effectiveness or side effects. The duration of most pain medication clinical studies are typically three months or less. I saw a study of a new novel agent recently that was six months. But typically they're only about 12 weeks or less. And typically we only see the emergence of uncommon side effects after the pre-marketing studies have been done.
These studies will typically exclude patients with mental health problems, so the eligibility criteria will screen out people who have mental health problems who are more susceptible to the side effects of opioids. They typically will exclude older adults, and they will also exclude patients with other chronic illnesses.
15:14 Common side effects of opioid medications include nausea, vomiting, constipation, drowsiness, problems with constipation and itch. Uncommon side effects include addiction, which will occur in about 10% who use these medications. Not uncommonly people will have hives which are caused by the release of histamine from mass cells. Occasionally people will have urinary retentions. I have seen people develop renal failure due to urinary retention on some of these medications.
Allergies are rare. Respiratory depression is rare in patients who use these medications for medical reasons. Two thirds of patients who have respiratory depression or whether breathing is reduced to a lower level that can support the oxygen or where they have actually respiratory arrests are not the person for whom the medication is prescribed. So if you're taking an opioid medication make sure that you're storing it in a locked box.
16:19 During periods of time where you're more susceptible to the side effects of pain medication, you should talk with your provider about reducing the dose of your pain medication. This is particular true with fentanyl patches where you'll get accelerated release of the fentanyl into the system during times where you might have a fever. Although this is not approved by the FDA, what I tell patients to do is to fold their patch in half during times where there might be fibro or they might have influenza or pneumonia. And cover the unexposed side with scotch tape so that the patch will stay on the skin.
Before cutting your dosages of your medications you should talk to your provider. Try to avoid using other sedating medications alongside prescription opioids such as lorazepam or alprazolam or clonazepam or sleep medication, as the side effects of those medications will escalate the potential for sedation with the opioid medication.
17:23 If you're using more than 50 to 100mg of oral morphine equivalent per day, make sure that there's a prescription for naloxone available, and that your caregivers are aware of how to administer that medication. But also expect that you may need to administer that medication, the antidote to an overdose of naloxone if somebody gets into your medications.
Naloxone is available in an intranasal formulation, so nasal spray. And most insurance companies are actually covering it. As I said before, keep your medications in a locked box.
18:10 People with chronic illness and their families will also often commonly confuse the development of physical withdrawal symptoms if they abruptly discontinue the medication with addiction. So physical withdrawal symptoms include things like nausea, vomiting, diarrhea, actually escalations and abdominal pain and joint pain, and this is pretty much universally expected if somebody's taking more than the equivalent of 1mg IV morphine per hour.
So typically what doctors will do when pain resolves is they will taper the medication by about 20% per day in the setting of an acute pain to lessen the likelihood of physical withdrawal symptoms. It's analogous to a person living with insulin requiring diabetes being without their insulin. So, to manage your risk of addiction to opioid medications be open with your provider about a prior history of substance use and mental illness.
Many patients will fear that if they're open with their provider that their provider will be very judgmental and will not adequately manage the symptom. I think most stem cell providers are pretty familiar with the occurrence of chronic pain and would be less likely than the average provider to not use an opioid medication in a setting where it's indicated.
19:46 Keep a log of how you take your medication. Your provider will probably need to order a urine drug test. It's mandated by insurance companies now that people have a urine drug test at least once a year. They will probably want to do a pain management agreement with you that will define expectations of the benefits and side effects of the medication as well as other indicated modalities that they'll probably want you to be trying out at the same time. Again, keep your medications in a locked box.
20:23 There’s a lot of concern in the medical community about over-prescribing opioids: The CDC three years ago I think now, came up with guidelines for dose limitations for opioids medications outside the context of palliative care end of life settings. And they're recommending that people be maintained on less than 50 to 100 mg per day. A lot of these guidelines are not really robustly evidence based. They're very reactive and I think it's really put a lot of patients with chronic pain from life limiting conditions in a very difficult place.
41% of primary care clinics, this study was published in JAMA a few months back, indicated that it would not accept new patients into their practice if they were receiving opioid medications like percocet. So there's a lot of paranoia in the medical community about prescribing these medications and it's exposing patients to much higher risk than the risk from the opioid medications themselves.
The Commission on Cancer has required in the last several years that distress screening, including screening for depression and pain be part of the routing care of patients who're receiving care in cancer centers that receive accreditation from them.
21:46: Although many modalities like mindfulness, psychotherapy, acupuncture are evidence-based, they're often not covered by insurance or require big out of pocket expenses. So for people who've deplete their financial resources due to the strain of having a life limiting illness, they're often not accessible for patients. Ask about grants that support programs or visit your local cancer support center such as Gilda's Club, which will likely have a lot of these interventions available.
22:30 Integrative medicine can help many people who are experiencing pain: Complementary and alternative medicine is the old fashioned term for Integrative Medicine. So there's a robust evidence-base that supports the efficacy of these modalities and it's not complimentary because people are usually paying out of pocket for it.
So about half of patients with chronic neurological conditions have sought help from Integrative Medicine providers. And it's effective, so 60% of patients who use Integrative Medicine modalities derive a great deal of benefit from these modalities. About 80% of veterans who've been studied acknowledge using Integrative Medicine modalities and all were willing to try four of the modalities that were studied, including massage, acupuncture, chiropractic interventions and herbal medicine.
23:20 Acupuncture has been found to be effective in acute procedural pain as well as in chronic pain in the setting of cancer. So our study in patients with breast cancer compared traditional acupuncture to sham acupuncture. Sham acupuncture is where the acupuncture needles are inserted in non-traditional meridians, and it was found to be effective for joint pain and patients who were receiving aromatase inhibitors.
Acupuncture, consult with your stem cell provider prior to doing it if you have low platelet counts or if your white cell count is low.
24:04 Psychological modalities have the same level of efficacy for patients with chronic pain. Other interventions that may be effective include Art Therapy, Music Therapy. Randomized clinical trials have shown benefits for hypnosis or procedural pain and preoperative pain.
24:30 Mindfulness interventions. As little as five minutes a day of mindfulness interventions may lessen the severity of chronic pain. It's been found to be effective for acute and long term relief of chronic back pain. Older adults there's less of an evidence-base. This study, a randomized clinical trial of mindfulness intervention versus a multidisciplinary pain clinic found that the mindfulness intervention was as effective as the chronic pain clinic in reducing pain intensity and lessening distress associated with pain.
25:13 There is a fair degree of evidence in regard to yoga for helping with chronic pain. I would encourage you to work with a yoga teacher who's certified for working with patients with chronic illnesses. Commonly in yoga studios or yoga classes people will be pushing you into poses that you're not ready to get into and it may exacerbate the pain. So chair yoga or restorative yoga may be pretty beneficial.
We're actually fortunate that at Rush a colleague of mine, one of our palliative medicine physicians took a sabbatical to learn how to be a yoga teacher so she's working with patients now.
26:02 When beginning exercise, start with moderate weight bearing exercise such as walking or swimming. Don't do more than five to seven minutes initially, three to five times a week. The mistake most of us make when we start exercising after not having exercised for a long time is that we overdo it initially and we'll cause additional injuries.
When you're increasing the amount of exercise that you do, don't increase it by more than 10% per week. And also, if you're over the age of 50 you should consult with your primary care provider about doing a stress test. Ask your doctor or your provider about resources for patients. Here in Chicago the Park District gym will allow people to use their facilities at low price or no price.
26:55 Talk to your healthcare provider before using medical marijuana to control pain: So, has anybody used medical marijuana? Talk to your provider before using it. If you're on tacrolimus or a Prograf, marijuana when used heavily can actually cause the accumulation of tacrolimus and there are case reports. Usually in the context of when patients are undergoing their stem cell transplant there are people who have toxicity from their tacrolimus.
Street marijuana is often contaminated with fungal spores or bacteria and is commonly laced with PCP. Patients who are immunosuppressed are at greater risk of infection.
There's some evidence for its effectiveness in neuropathic pain. CBD is the chemical in marijuana that helps with pain primarily. So when we're endorsing patients using this, typically we're recommending it in patients who have not undergone stem cell transplant because we worry when they're on tacrolimus about they having toxicity.
There's some evidence that patients who use medical marijuana will decrease their use of pain medications by about 25%. Mimi, is it available in Maryland?
28:14 [Mahon] It is available in D.C. It is becoming available in Maryland. I think the big challenge for me is what we're calling medical marijuana. And I think where we make a distinction is, I don't care what people do for recreational marijuana, but if we are ... Sorry, for recommending the use of a medication we should hold it to the same standard that we are any other medication. So if I'm asking that you take oxycodone or acetaminophen I can say, "This is how many mg you should take so many times a day." And I can't say that with marijuana.
28:56 [Mahon] Half the products labeled as CBD do not have any CBD in them: CBD is interesting, because it's showing up ... Where did I see it last week? Like Home Goods or something like that. Interestingly about half of the products that are labeled as CBD turn out not to have any CBD in them. The advantage to CBD is that it's not psycho-active. But I think the really difficult thing about the concept of medical marijuana is if we're calling it medical, and this is merely my opinion and does not reflect the opinion of the National Institute of Health, we should hold it to the same standard we should do any other medication and say, "If you want to use recreational marijuana and that works for you, that's fabulous. But what are we saying about the medical part of it? Does that make sense?
29:39 [O’Mahony]: There has been a limited research base in marijuana because the federal government has restricted access to researching marijuana. So it's a paradox. We recommend that people use edibles or topical forms and not smoke marijuana. There is a mild increase in the risk of heart attacks in people with underlying coronary disease who smoke marijuana. Less of a concern with topical or oral. The topical and the oral takes much longer to work than the smoked or vaped marijuana but tends to work for longer.
We also advise patients not to use it within a couple of hours of the initial doses they're much more likely to have psychological side effects of it if they take multiple doses in short succession. THC is more psychological active. It does help with cancer associated loss of appetite and is used in pill form as Dronabinol for the promotion of appetite in HIV disease and cancer.
Doctors can't tell the dispensaries what to give, and the dispensaries will typically do their own thing. So in conclusion.
[audience] You said, "Can tell them or can't tell them?"
[O’Mahony] We can advise patients what to get but here in Illinois we cannot direct the dispensaries what to give.
31:09 [Mahon] Unlike other medications, physicians can’t recommend how to use medical marijuana. So it's pharmacists making decisions or the person who happens to own the store. So unlike any other medications, the physicians are being kept out of the recommendations for how to use medical marijuana. And frankly, and you probably know more about this than I do. I couldn't tell you the efficacy of different strings and brands, however I do know when my son lived in California, he could get home delivery of marijuana. So kind of depends where you live.
31:41 [O’Mahony] So in conclusion, chronic pain is common in patients who have GVHD. The approach to it should be multi-module. It should focus on the whole patient and the whole family.
And the approaches should be multi-dimensional. It should include involvement of other professionals with different skill sets, so occupational therapists, physical therapists, social workers, psychologists.
Medications have a role, but they have limited benefit and have side effects.
Routinely discuss with your physician how pain is impacting on your quality of life and daily activities with your providers. Thank you.
Question and Answer Session
32:23 . Thank you doctor O'Mahony. We will now take questions, and we have plenty of times for questions. So don't be shy. And Laura in the back will bring the mic. Everything's being recorded, so we want to make sure we're using the mics. Will help you with stating your question, and she's right behind you sir.
33:02 [audience] Difference between medical marijuana and recreational marijuana: Okay, Dr. O'Mahony, since you got on this marijuana situation here, what differentiates medical marijuana from recreational marijuana?
[O’Mahony] In a lot of states, recreational marijuana is not legal. Here in Illinois it will become legally available as of January the 1st. Medicinal marijuana is where patients are using it for chronic illness.
[audience] Question is, on January 2nd, what differentiates between medical marijuana and recreational marijuana.
[Mahon] Great question.
[O’Mahony] I don't know this for sure, but I've been told by a patient that medicinal marijuana will be tax deductible, recreational wouldn't.
[audience] In other words, there's no medical differentiation in other words.
[audience] Got it. Okay, thank you.
33:55 [audience] Is it safe to use topical CBD oil when on tacrolimus? That's really interesting. You mentioned that not to use marijuana with tacrolimus. Can you use the ... My husband uses a CBD oil rub for pain, but he still on a little bit of tacrolimus, is that a bad thing?
[O’Mahony] I have only seen case reports in the literature of people who've had tacrolimus toxicity in the context of when they're undergoing their stem cell transplant. So people who are using gummies in the hospital without letting their provider know, but I haven't seen it in the context of people with chronic GVHD. Intuitively that might be, because when you're in the hospital you're on a lot of other medications that might inhibit the metabolism of tacrolimus. It's like anti-fungals and antibiotics.
34:52 [Mahon] It is possible the menthol in CBD creams is what is giving relief, rather than the CBD: I think the other part of that is a lot of things that are listed as CBH ... excuse me. That cream, CBD creams or oils. If you look at the ingredient list there's, excuse me, very often a lot of menthol in them and other things like that. The ingredients of any compound, whether it's breakfast, cereal or a CBD cream have to be listed in the order of their concentration. So in the best cereals sugar is always the first ingredient for example.
If you look at the ingredient of a lot of the creams and oils that are CBD creams, CBD is the last ingredient, which tells you there's very, very little in there. And very often the benefit that people get is from the menthol, whilst like an Icy Hot or Biofreeze. So it's good to compare, and the only reason I say that is things that have CBD in them seem to have their prices just about double the same thing without CBD. And I just feel like it's gotten so trendy. We're paying a whole lot more for things that may not have a benefit. So try and I don't get any benefit from the company unfortunately, but try a Biofreeze or something like that and see if she get the same efficacy. Unless it's a pure ... Right, right right
[audience] But will the CBD adversely affect the tacrolimus, or cross promise of tacrolimus [
[Mahon] I agree with doctor O'Mahony. I don't know we know that.
It just hasn't been studied this much. Case reports, I've seen that this happened ... An article in which it says, "This happened to this person," but we can't generalize from this and say, "Therefor nobody should do it."
36:41 [audience] Question about pain associated with GVHD and other medical issues: Hello doctor O'Mahony. Stand up so I can see you. I actually had my transplant at Rush Hospital six years ago, January. I had Dr. Nathan, who was part of my team. Right now I have GVHD and I'm on 25 of Pregnyl and I just feel wonderful. But I know I can't stand it. So, what would you suggest in be one cycle off of it. I have used the CBD oil in the past, because I have it in my joints.
When I first went to my doctor, I actually had knee surgery, total knee replacement, and then 15 weeks later was diagnosed with ALL and Ph chromosome disorder. And he wouldn't give me any more pain medicine, because he said they're only limited to I think three months and then I'd have to go to another doctor, but then we found out I had the ... So what would you suggest after ... It's going to take a while for me to get off of the prednisone, so I can feel great for a long time. I've lived with the pain, because the doctor's just kind of ... They say [inaudible 00:37:35], yeah it's like three, four, that's where it goes. Nobody does anything.
37:40 [O’Mahony] See a palliative medicine provider. Maybe see an occupational therapist. Physical therapist. Medications do have a role and people can be on medication long term. Many people are on those medications for many years and so long as you're using multi-modal approaches there are things that may help with the pain. Just using one type of intervention alone is probably going to have limited traction or efficacy.
[audience] So use a couple of different things to help it? Okay.
38:20 [Mahon] Acupuncture may help with GVHD pain: I think also see if you can get an acupuncturist. More insurance companies are covering acupuncture because it has been shown to be opioids sparing. But I'm going to say, "If you use an acupuncturist, don't go to the one at the spa, don't go to the one in the mall. Find a Chinese trained acupuncturist." Very often they'll have the letter CMD after their name. So they really know what they're doing.
[audienc] I had it done once on a cruise. That thing hurt.
[Mahon] I know. And it shouldn't hurt. But again, don't go to your cruise acupuncturist who's doing it to get their four hours in the sun every day. You want someone who this is their profession.
38:57 [O’Mahony] So there's an acupuncturist in the cancer center at Rush and there's a grant that supports a couple of treatments at no charge as well. Some people may have longstanding pain relief from only one or two treatments of acupuncture, some people need to do a full course of acupuncture before they start to have the emergence of relief.
[audience] Well, I came from Tennessee to get my transplant. I live in Tennessee and I'd have to check there to see, because it's a long trip up here. But I'm enjoying it.
39:39 [audience] Question about pain management for GVHD of the gut: Hi. My question is about the pain management for GVHD of the gut. And I have a 15 year old. I see a lot of older patients here. It's a lot more difficult when you're dealing with a child as to an adult. At least they can tell you exactly how they feel, compared to a child. So my question is, "What's the best medication for this GI pain," and in your slide you say something about her bone medication being effective. I just wanted to know what kind of herbal medication or are they really effective, and where one can get such medications.
40:42 [O’Mahony]: Herbal agents, there are some agents that do have an evidence-based, for example turmeric may help with joint or bone pain. There's a NIH website that has about 100 agents that have been studied, I think it's called herb resource list.
[Mahon] I should know it, but I just go to dr. Google and say, "Complimentary and alternatives at NIH and it will take you there."
[O’Mahony] Also take a look at the Sloan Kettering complimentary medicine website. It has a lot of good information there. There is no one best medication, it's still somewhat of a trial and error process. For example, the opioid medications work on different pain receptors and we don't have blood tests that are covered by insurance companies to determine what a person's profile, receptor profile is upfront. So it's still somewhat of a trial and error process. So different people have different sensitivity to the pain relieving effect of a medication or more susceptibility to the side effects of a medication.
42:12 [O’Mahony]: Side effects of opioid medications: So, the common side effects that people will have are GI side effects like nausea or constipation, problems with concentration. Some people report that they feel sleepy. There's theoretic evidence to suggest that opioid medications may have an immune suppressing effect. In patients who are on these medications long-term there may also be elevation in hormones that promote depression. They may also cause susceptibility to things like osteoporosis as well.
42:54 [Mahon] The other thing that is sometimes helpful is ginger, specially for nausea and vomiting. And in people who have vertigo something ginger helps with the nausea that comes from that.
43:18 [audience] Question about dependency on opioids: More worried about him being dependent on those medications. And as much as they try to wean him off, the oxycodone, that's why they put him on the methadone. Sometimes he needs more of the oxycodone to get him to a certain level before it actually kicks in. So my fear is just him being dependent on the oxycodone after he wants just to control the pain.
43:52 [O’Mahony]: Sure. Best way to taper off opioids: So I think in terms of tapering the medication it's important that when providers are tapering medications that they reduce it in small percentages and do it slowly over time. And I think what can happen is if they do it to precipitously is they'll precipitate physical withdrawal symptoms, which will include pain, abdominal pain, joint pain. It needs to be done gently over time and not in 20% reductions every visit. And I think the current guidelines by the CDC are not helpful in that regard.
44:36 [Mahon] I think the other distinction to make is you use the word dependent. And yes, any person who's been on opioids for a long period of time is dependent. But it's like taking a steroid, so you gave the example of being on a steroid for a long period of time. Your body is used to it and if we stopped it to quickly as you said, you would have side effects. That's the same thing with opioids, if we stop it too quickly you'll have side effects. But that is not addiction. Addiction is the pursued of a use of a medication or other substance to the extent that you are causing harm to yourself, to your relationships, and to other things like that.
So the need for medication for pain relief is very different from the need for medication for a high. And I think one of the most important things Dr. O'Mahony said is, "When you have a complex pain situation as you have in your family, find a palliative medicine provider." Because they know what they're doing. They're comfortable working within the rules if you will. We've all heard about the Center for Disease Control 2016 recommendations. But you also have to know when those rules don't apply, which is very often in this field. So it's again, it's build your team, find people who are comfortable with your son's condition. And comfortable with your son's pain and who will work with you to say, "Maybe getting him off right now is not a bad idea, or is not a good idea."
Methadone is very good and very helpful, but again, you have to know, you almost can't tell people who's on methadone, because they'll assume that he's an addict if he's on methadone. That happens with our patients all the time that we want to put them on methadone. And they say, "But isn't that for people who have an addiction problem?" And when I tell them is that the numbers that are used to treat addiction are 80, 90, 120 mg. And the amount we use to treat pain are 2.5 mg, 5 mg, 10 mg. So it works differently and it's a very good medication. But you're in a difficult position. You never feel that you're doing enough for your children. And you need to find people who will help you and remind you that you're doing all the good things for your son.
46:52 [audience] Question about gabapentin to control pain: Okay, what about the use of gabapentin for the pain that he has? Now he has this pain on his feet. He has pain on his feet and then he complains of being those prickly kind of pain when he stands on them, and so. He's on gabapentin as well, and I don't know exactly what those things control. Is it just the pain, the nerve pain, or it also helps in the gut pain? It's all pain medications, I don't know what happens. The methadone he's on a very small doses, he's on 5 mg. And the oxy he's on 7.5, because 5 mg wasn't doing it anymore. So, it's all pain medications, but I don't know which one is controlling what. So maybe if you could explain a little bit about that gabapentin, what it actually does, because he feels it's not doing anything for him.
48:01 [O’Mahony] Again, the response rate to medications like gabapentin, about a third to 50% of people will respond to an individual medication. They may require trials of multiple different medications that work for neuropathic pain. The gabapentin in gut GVHD may have a role in reducing hyper sensitivity of the nerves in the gut. The medical term for that is Hyperalgesia. But typically people will need to try a couple of different adjuvants before they'll find one that helps. There is no one magic ballot. People will need to try multiple different approaches.
48:44 [Mahon]: Acupuncture can help people with peripheral neuropathy: But it also will work for the Peripheral neuropathy that you described, the buzzing tingling in his feet. The other thing that's very good for Peripheral neuropathy, and I'm sounding like a commercial for acupuncture. That acupuncture has remarkable results in Peripheral neuropathy. It may take as many as eight sessions, and sometimes longer. And insurance is covering it more. So if your insurance company says, "No," ask them if they'll help you. But again, use your organizations. Use your social worker to help you get through. And as Dr. O'Mahony said, "More and more cancer centers are having acupuncturists on board."
49:38 [audience] Question about chest pain and thorax: My question is I have a lot of chest pain and you have mentioned about muscle cramping of the thorax. And I don't know what the thorax is. And would that be something that would be indicative of this? Lot of times people say, "Well, you better go to the doctor or go to the emergency room right now, because you're having chest pains." Because they think I'm having a heart attack. And it's like, "No, I just got to wait a few minutes and then it'll go away." And is that what you were referring to in terms of the thorax?
50:19 [O’Mahony] Yeah, the thorax is the ... Basically from here to here… of the chest. Chest pain that we should all worry about being associated with cardiac disease would be typically left sided, radiating into the left arm often times. Maybe associated with shortness of breath or nausea. It's often times precipitated by increase in activity. You should think about going to the emergency room if you're having an acute onset of chest pain. Other concerns might be things like a pulmonary embolism or a clot in the lung. But a pain that is associated with tenderness when you press on the area where you're experiencing the pain is liable to be musculoskeletal.
[audience] So how would you be able to tell the difference if it's the muscle pain? Because a lot of times mine will be on either side, or in the middle, and it's like a javelin going right through you. And you can almost feel it in the back sometimes, but that's probably psychology or something like that. But it just hurts, and then last time my doctor sent me to the emergency room, and they hooked me up and he says, "Oh my God, you're going to be here for days." And later that night I was out, because they couldn't find nothing wrong with me, because a day had passed, so.
52:04 [Mahon] What risks are greater than opioid addiction: I actually have a question. Dr. O'Mahony, you had mentioned in your presentation exposing them to much bigger risks than the opioid addiction. Could you just clarify what you meant by that?
52:16 [O’Mahony] So, three quarters of the new heroin users in this country were previously taking pain medications. And I cited a study that came out in JEMA earlier this year. 41% of studied primary care clinics indicated they would not accept patients into their practice who are receiving opioid medications. So you have patients who may have been using these medications safely for years, maybe many years. Her finding that if they need to see a new primary care provider, that vast numbers of them are unwilling to prescribe these medications.
And it's really telling that a large proportion of them [inaudible 00:53:07] heroin users in the country were previously taking pain medication. I think it's because the medical community is doing a disservice to these patients.
53:41 [audience] What to do when pain medications are no longer working: Medications secure benefits. When you say medications have limitations, I'm on Amitriptyline, Patanol and Prednisone and I still have pain. So, have I reached a level where those are no longer working for me and I should be seeking ... Telling my doctor that we have to join you? I don't want to add more pain medicine.
54:05 [O’Mahony]: Sometimes if you rotated to another pain medication you may have better sensitivity to that pain medications because of your receptor profile. People will build up tolerance to pain medications over time and may need higher doses. If you've not been on other opioid medications you might have a better response to them.
The concern with the Amitriptyline in adults when we're older than 50 in particular is that the side effect profile of Amitriptyline can limit titration of the medication, concerns about cardiac side effects and other adjuvants for neuropathic pain may have less of those concerns. So there may be some benefit to rotating to another adjuvant medications for neuropathic pain.
55:15[ audience] Question about blue light therapy for neuralgia: You got to tell me that. [inaudible 00:55:19]. What do you think about blue light therapy for neuralgia. For the neurological pain?
[O’Mahony] I haven't studied it, I can't comment.
55:29 [audience] My other question is, for the medical profession, what kind of education are you getting on the use of marijuana and CBD?
[audience] Is it improving?
[O’Mahony] I think there's a lot more interest in it. I think that for example at Rush we had a grand rounds from a public health physician who's in Denver in Colorado who spoke about the experience there. We have a regional palliative education program that we've included programing on medicinal marijuana.
[audience] Because you talked about not knowing different types of marijuana. When it becomes legal in Illinois you can't say to go to a dispensary and get this certain type, because ... And the different concentration of the THC varies with the different type of marijuana. I think that's what I'm kind of asking is where the education is going to help the patients to ... There have been limited studies on how effective marijuana is for chronic pain. And it would be helpful for the consumers who know nothing about marijuana to have some guidance.
[Mahon] I think part of the challenge is that, and I apologize for the choking, is that it's not a matter of having knowledge to disseminate, we don't know the answer to that. Because in this country marijuana is a schedule 1 medication, it cannot be studied. Until the government changes marijuana to a class 2 medication so that it can be studied, we won't know. So it's not that the knowledge doesn't exist. And frankly it's going to ... There is a journal that just came out last week in which every article in it is about Cannabidiol and marijuana and medical uses. But a lot of it is ... Here's the little bit that we know, but there's so much that we don't know. So we would almost be irresponsible to say, "Try this." And again, because I can't say, if I were putting someone on the medication like desipramine, I could say, "Take 10 mg of this pill at bedtime every night."
For marijuana, I can't do that. Therefor it would be irresponsible of me to say, "Go to this dispensary and use this purple plant." Because I don't know personally. But the knowledge doesn't exist.
58:37 [moderator] Well thank you very much. I think we're going to wrap this up so everyone can go to lunch. Thank you Dr. O'Mahony and Dr. Man for your thoughtful answers and to all these great questions by the way. And this time everyone can head to the grand ballroom for lunch. Thank you all.
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