Neuropathy: What It Is and How to Treat It

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Neuropathy: What It Is and How to Treat It

Tuesday, May 2, 2023

Presenter: Aimee Chappell ANP-BC, MedStar Georgetown University Hospital

The presentation is 27 minutes long followed by 29 minutes of Q & A.

Summary: The peripheral nerves in our body control our sensation and movement. Damage to the peripheral nerves is called peripheral neuropathy. This video discusses the different types of peripheral neuropathy, causes, risk factors, symptoms, tests to diagnose it and treatment options.

Highlights:

• Certain cancers, like multiple myeloma, can cause peripheral neuropathy.
• Some types of chemotherapy, like Velcade® and thalidomide, are toxic to the nervous system and can cause peripheral neuropathy.
• Graft-versus-host disease (GVHD) causes peripheral neuropathy in up to 6% of patients.

​Key Points:

(03:24): Uncontrolled diabetes is the leading cause of peripheral neuropathy. Excessive alcohol consumption, HIV and a vitamin B12 deficiency can also cause neuropathy.

(04:49): The chemotherapy drugs Velcade®, thalidomide, Taxol® and vincristine are commonly associated with neuropathy.

(06:18): Chemotherapy-induced neuropathy typically causes sensory neuropathy. Sensory neuropathy is the most common type of peripheral neuropathy.

(07:44): Other risk factors for developing neuropathy include older age, a history of smoking, long-term use of immunosuppressive drugs, and kidney or liver impairment.

(09:16): The most common symptoms of peripheral neuropathy are numbness in the hands and/or feet.

(10:07): If the motor nerves are affected, you'll notice more gait imbalance in the way you walk, weakness in your muscles, muscle cramping, or muscle loss.

(10:36): If the autonomic peripheral nervous system, which regulates involuntary processes such as heart rate, blood pressure, and digestion is affected, symptoms can include lightheadedness, impaired food digestion and/or erectile dysfunction.

11:05): Tests for peripheral neuropathy include touch tests, strength tests, blood tests, nerve conduction tests, EMGs (electromyography), x-rays, a nerve biopsy an/or a skin biopsy.

(15:01): Peripheral neuropathy is managed in two ways: by treating the underlying cause, and by managing the symptoms.

(19:24): Symptom management may include lifestyle changes; supplements like B-complex vitamins; anti-depressant, anticonvulsant or pain medication; topical treatments like lidocaine patches; and/or physical and occupational therapy.

Transcript of Presentation:

(00:00): [Marla O'Keefe]:  Hello, my name is Marla O'Keefe, and I will be your moderator for this workshop. Welcome to the workshop: Neuropathy: What it is and  How to Treat It. I am pleased to introduce you to today's speaker, Ms. Aimee Chappell.

(00:14): Introduction of Speaker. Ms. Chappell is a board-certified nurse practitioner specializing in multiple myeloma and plasma cell disorders at Lombardi Comprehensive Cancer Center at MedStar Georgetown University. In addition to caring for patients in the hospital setting, Ms. Chappell leads a regional monthly support group for patients and caregivers dealing with plasma cell disorders. She has focused her career on malignant hematology and worked with leukemia, lymphoma, multiple myeloma, and bone marrow transplant patients at academic centers. Please join me in welcoming Aimee Chappell.

(00:57): [Aimee Chappell ANP-BC]: Overview of Presentation. Everybody, I'm very happy to be here, so thank you for having me. Today we will be talking about neuropathy: what it is and how to treat it. We'll start with our objectives for today's talk.

(01:13): First and foremost, we'll define what peripheral neuropathy is. Then we'll talk about some causes of peripheral neuropathy. There are many of them, but we'll review a few. We'll talk about risk factors for developing neuropathy and contributing causes that can worsen neuropathy. We'll talk about symptoms of peripheral neuropathy, testing for peripheral neuropathy, and finally, treating neuropathy. And within treating neuropathy, there are two primary categories that we need to address: one is treating the underlying cause, while the other one is symptom management.

(02:02): Starting with defining peripheral neuropathy, our nervous system is our body's command center. It originates in the brain, and it tells our body how to move, how to feel, and sensations. Our central nervous system has two main parts: the brain and the spinal cord. And then there is our peripheral nervous system.

(02:33): The peripheral nerves in our body control our sensation and movement. Neuropathy damages these peripheral nerves. There are many ways that these nerves can be damaged, depending on the underlying cause. There are more than 100 types of peripheral neuropathy, and we'll review a few of them.

(03:05): Initially, when peripheral neuropathy presents, it typically affects the long nerves. So, it's felt primarily the nerves in the hands or feet. It typically presents as a "pins and needles sensation" or numbness. We'll talk more about that in the symptoms section of this talk.

(03:24): Causes of peripheral neuropathy. Unfortunately, there are many different causes. There's even a suggestion that there are hereditary causes, as well. Diabetes is the number one cause of peripheral neuropathy. Typically, it's uncontrolled diabetes. Alcohol consumption, HIV-induced neuropathy, and nutritional imbalances, specifically B12 deficiency, can cause neuropathy.

(04:03): Carpal tunnel is a common neuropathy that we'll discuss a little more. It's called entrapment neuropathy and is the most common type of neuropathy. I'll explain why in a little bit.

(04:17): We'll also discuss chemotherapy-induced neuropathies. And then, there is GVHD-associated peripheral neuropathy.

(04:27): Underlying cancer can cause peripheral neuropathy. The most common cancers that can cause neuropathy are multiple myeloma, amyloidosis, and a lymphoma called Waldenstrom's macroglobulinemia.

(04:49): Some types of chemotherapy are toxic to the nervous system and can cause neuropathy including bortezomib (Velcade®), thalidomide and vincristine.  Let's talk about two types of neuropathy: chemotherapy-induced neuropathy and GVHD-associated neuropathy. Chemotherapies can be neurotoxic, meaning they can harm the nervous system. About 30-40% of people who take neurotoxic chemotherapies may develop peripheral neuropathy. Examples of such chemotherapies include bortezomib (Velcade®) and thalidomide, an old drug that is still used sometimes. Taxol and vincristine are also neurotoxic drugs commonly used in chemotherapy.

(05:53): Unfortunately, it used to be thought that older agents were the biggest culprits causing neuropathy, but newer agents are doing it as well. Typically, there's no way to prevent neuropathy associated with chemotherapy, but you can help by eliminating your other risk factors.

(06:18): The damage to the nerves is what causes this chemotherapy-induced neuropathy. It's usually sensory neuropathy, which we'll talk about a little bit more later. There are different types of neuropathies. Sensory neuropathy is the most common type of chemotherapy-induced neuropathy.

(06:41): Graft-versus-host-induced neuropathy occurs in up to 6% of patients who are transplanted with stem cells from a donor. Graft-versus-host-induced neuropathy is very rare, but it can be associated with a transplant using cells from a donor called an allogeneic or allo transplant. It occurs in about 0.6 to 6.1% of patients, and there are different causes.

(07:07): First, you must ensure it's not caused by an infection, which your healthcare provider can check with blood work. GVHD-induced neuropathy typically occurs about five and a half months after transplant. It is more common in patients with long-term immunosuppressant drugs such as steroids like prednisone, cyclosporine, or tacrolimus. The different drugs are associated with different kinds of neuropathy.

(07:44): Other risk factors for developing neuropathy include uncontrolled diabetes, older age, a history of smoking, excessive alcohol use, long-term use of immunosuppressive drugs and kidney or liver impairment. Risk factors for developing neuropathy. We talked a bit about diabetes and how that's the most common cause of neuropathy. If you do have uncontrolled diabetes, excessive alcohol use can put you at risk. In addition, long-term use of immunosuppressive medications to treat GVHD puts you at risk.

(08:14): The older you are, the higher your risk for developing peripheral neuropathy. A smoking history can put you at risk. If you have baseline neuropathy from diabetes or kidney disease and are exposed to neurotoxic chemotherapies, you are at risk for worsening neuropathy. Kidney or liver impairment can put you at risk of having toxic levels of different substances in your bloodstream, which can then damage nerve tissue and lead to worsening, or a diagnosis, of neuropathy.

(08:58): The symptoms of peripheral neuropathy vary depending on the affected nerve type. There are three primary categories of symptoms: sensory, motor, and autonomic.

(09:16): Starting with your sensory nervous system, you will notice numbness and tingling if these nerves are affected. People describe it as a pins and needles sensation in their fingers or toes, which can advance. You can have pain in these extremities. You can have decreased or increased sensations and temperature changes. A lot of people will say their toes always feel cold. People sometimes explain this as electric sensations going up or down their feet or their hands, or it feels like something's in their shoe when there isn't, and they're constantly checking to ensure they're not stepping on anything. It can feel like you're walking on pebbles.

(10:07): For the motor nervous system, if the motor nerves are affected, you're going to notice more gait imbalance in the way you walk, weakness in your muscles, muscle cramping, or muscle loss. People describe it as their leg feeling very heavy or their arm feeling heavy, and it's just really this weakness of their muscles from the nerve damage.

(10:36): And then the autonomic nerves. The autonomic system is a part of the peripheral nervous system, regulating the involuntary processes in our blood. So, our heart rate, our blood pressure, our digestion. The symptoms of autonomic neuropathy will be lightheadedness if your blood pressure drops suddenly, impaired food digestion, and erectile dysfunction.

(11:05): Tests for peripheral neuropathy include touch tests, strength tests, blood tests, nerve conduction tests, EMGs (electromyography), x-rays, a nerve biopsy or skin biopsy. Testing for peripheral neuropathy. Everything starts with a good physical exam. A light touch is used. Usually, we touch people's feet and have them close their eyes, and we'll say, "Tell me when you feel me touching your foot and which foot am I touching?" We also use vibration testing with a tuning fork. We'll ask you to tell us when the vibration starts and stops.

(11:32): Strength testing. We'll have you squeeze our hands or lift your leg against resistance with our arms. We'll check the reflexes of the extremity and do a walking test, where we have you walk up and down a hallway to ensure you don't have any imbalance or an odd gait.

(11:55): In addition to this, a lot of blood tests are done. First and foremost, we check for vitamin deficiencies. Your kidney and liver function is important to check. We check for signs of infection because some infections can cause nerve issues. And we check immune system levels.

(12:22): More testing for peripheral neuropathy. It's common to undergo nerve conduction tests and EMGs (electromyography). Nerve conduction tests are done with little pieces of tape on the skin to measure the strength and speed of these nerves. They're sending little electric shocks through the stickers on your skin.

(12:47): EMG or electromyography is a very common test. You have tiny pins put in to measure the electric nerve activity and distinguish between muscle issues and nerve disorders. That test tends to be slightly more painful than the nerve conduction test and can make the muscles quite sore afterward. The EMG detects if the muscle is responding to the nerve sending a stimulus, whereas the nerve conduction test detects a problem with the nerve.

(13:31): There is an option for a nerve biopsy, which is extremely helpful in gathering information on the cause of peripheral neuropathy, but it also carries risks, including damaging that nerve even more, so it's not used too frequently.

(13:49): There's also a skin biopsy, a more benign test that doesn't cause as much risk. It's mostly helpful for sensory or small fiber neuropathy, which may not be picked up on the other nerve tests we discussed, the EMG and the nerve conduction test.

(14:11): Next is radiology imaging for peripheral neuropathy, which is a very common first step. So, for example, if you're having neuropathy symptoms in your arm, we want to ensure that no nerves are being compressed in your neck. Nerves can be compressed for many reasons: such as arthritis or a herniated disc. If you have a type of cancer that can cause bone damage or masses, they will also look for that. Similarly, if you have neuropathy in the lower extremity, they may look at your pelvis, lower spine, or lumbar spine to see if there are any compressed nerves.

(15:01): Managing peripheral neuropathy. There are two categories that we look at. One is treating the underlying cause, and the other is symptom management. It's important to remember that treatment varies greatly depending on the cause of the neuropathy, the location of the neuropathy, the symptoms themselves, how severe the symptoms are, and your medical history.

(15:32): The best treatment for anything is prevention, which is very hard with neuropathy, particularly those caused by chemotherapy or GVHD. But we can minimize our risk factors.

(15:53): Treating the underlying cause of peripheral neuropathy. If possible, we always want to treat the underlying cause of every issue. If it's drug-induced or chemotherapy-induced, we consider stopping or reducing the dose of the drug after discussion with your healthcare team. Some of these chemotherapies are very dose-dependent, meaning that if we lower the dose, the risk of neuropathy lessens significantly. So, it's extremely important that you share that information with your healthcare team at the first sign of neuropathy because the quicker they can address it and make any changes, the better for you in the long term.

(16:39): If it's a vitamin deficiency, we treat you with vitamin supplements such as B12. Is the disease under control if it's induced by cancer or disease? And if it is, there may be another cause for your neuropathy. If it's diabetes-induced because your diabetes is uncontrolled, you need to have better control with insulin or other medications.

(17:12): To treat the underlying cause, let's talk about carpal tunnel. Half the patients that come to me with peripheral neuropathy symptoms end up being a carpal tunnel. The carpal tunnel is common. It occurs in 3% to 6% of the general population. It's compression of the median nerve at the wrist. So, when you flex your wrist, the nerve is compressed, resulting in numbness and tingling in the fingers, hand, and wrist. People think it would mostly occur in one hand, but some studies show that up to 50% of patients have it bilaterally, which means in both hands.

(17:57): There can be many causes. It can be hereditary. It can be trauma to that extremity. Repetitive motion. It can be induced by a cancer that increases your risk for carpal tunnel, such as multiple myeloma.

(18:18): If you're experiencing carpal tunnel, wearing a wrist brace can be helpful, especially at night when people flex their wrists while sleeping. The brace keeps the wrist straight and prevents nerve compression. It's recommended to try wearing a wrist brace to see if it improves the condition. Many healthcare providers suggest this as a first step to determine if carpal tunnel is the issue.

A suitable treatment option is taking over-the-counter pain medication or anti-inflammatory medication.

(18:55): If your carpal tunnel is caused by repetitive motion, it may be helpful to stop that activity. For example, I developed carpal tunnel from scooping deep-freezer ice cream while working at an ice cream shop during college. Stopping that task helped eliminate the problem. Surgical intervention may be necessary in more severe cases, but it is generally not invasive and can be very beneficial.

(19:24): Symptom management may include lifestyle changes; supplements like B-complex vitamins; anti-depressant, anticonvulsant, or pain medication; topical treatments like lidocaine patchers; and physical and/or occupational therapy. Symptom management gets a little trickier. We'll start with self-care. If you are a smoker, stop smoking because that can aggravate peripheral neuropathy. If you exercise, that can help strengthen the muscles, especially for motor neuropathy. Controlling diabetes and blood sugar levels, weight control, and good eating habits can also help.

(19:52): Supplements, such as alpha-lipoic acid, B complex, and acetyl L-carnitine, are tricky. There's a good amount of evidence that they are helpful. We don't know how long one should take them, how long they're needed, and the adequate dose. So, it's difficult to give too many guidelines on that, but they have been shown to help many people.

(20:27): Moving on to medication. Sensory neuropathy is that feeling of numbness, tingling, and temperature changes. Unfortunately, that can be hard to treat without medication. Many medications are available. Not all are helpful.

(20:48): Antidepressants are the newest agents used for peripheral neuropathy. Examples of this are duloxetine (Cymbalta®) or nortriptyline (Pamelor®). Antidepressants can help because they increase the brain's ability to prevent or stop the incoming pain signal so that they can help with those sensations and particularly pain.

(21:14): Anti-convulsant or epilepsy medications are commonly used as well by neurologists. Examples are gabapentin and Lyrica®. Unfortunately, these can make you tired and driving difficult when taking them.

(21:34): And then there's over-the-counter pain medication, which can be helpful. Lastly, for severe symptoms, narcotics are sometimes advised.

(21:49): Topical treatment can be helpful. Lidocaine patches or gel, available over the counter, can be a local anesthetic for that area. Some people think Capsaicin cream, a chili pepper extract, is helpful. You can soak your feet in cool water. Not ice water, but just cool water or with Epsom salts.

(22:24): The nonpharmacologic symptom management. Other things we can do for our peripheral neuropathy. Physical therapy can be very helpful for both motor and autonomic neuropathy. It can help strengthen your muscles. It can help with your walk and your balance. It can help with endurance, which is important for all of us.

(22:47): Physical therapy can also help with autonomic neuropathy. For example, if your blood pressure drops, a physical therapist can help you learn how to move slowly to prevent that from happening.

(22:58): Occupational therapy can be helpful as well. Occupational therapists can help you to find aids to assist, such as good braces. Sometimes with neuropathy, people can have trouble gripping things like a phone or typing on a computer. Occupational therapy can be helpful for that.

(23:25): Other non-pharmacologic ideas that may help are backed up by evidence by a little less evidence. There's evidence for all of these, but there's conflicting evidence,

(23:40): So, one thing is cognitive behavioral therapy. You may have heard about cognitive behavioral therapy for different things. The most common thing you hear it used for is back pain, which many people deal with. It's also called CBT, a mindfulness strategy that helps train your brain to deal with pain receptors. The evidence varies, but they do know that CBT is effective, in general, for pain syndromes. Hence, the overall thought is that it could be helpful for peripheral neuropathy-induced pain.

(24:25): There's conflicting evidence for acupuncture and massage. Some studies show that it's effective, and some don't. It might be trial-and-error to see if these help with your symptoms.

(24:40): Aides are important for peripheral neuropathy. Having orthopedic shoes or good strong shoes with thick bottoms is important. Using a walker for gait imbalance. Hand or foot braces are helpful as well.

(25:00): If you're having a lot of numbness in your feet, it's important to have proper footwear to keep your feet safe. Good foot care is important. If your feet are numb, you can step on things and not even know that you have done so. You can injure your foot and not even know there is a cut or an injury. You can have an infection on your foot and not realize it.

(25:35): So, it's important to have very good sturdy shoes with hard bottoms so you don't step on something that could damage your foot without realizing it. You must watch out for injuries or skin breakdown at the site. You want to keep your feet dry to prevent too much moisture, and always wear shoes. It's very easy to stub your toes. I've had people with pretty bad toe damage because they didn't realize they hurt them.

(26:08): I want to say a couple of things about what's next for peripheral neuropathy. Peripheral neuropathy is a frustrating symptom because it's not always treatable, which is difficult. There's a lot of work with clinical trials to change that.

(26:35): The National Institute of Neurologic Disorders has funded a lot of different clinical trials, some of which are looking at gene testing for the hereditary impact of this. Studies are looking to prevent or treat neuropathy. Studies are looking at the different brain pathways to identify substances to block those signals. Even studies are looking at tissue engineering to develop new therapies for treatment. So, there's a lot of hope in the future for this. And with that, we'll wrap up and address some questions.

Question and Answer Session

(27:17): [Marla O'Keefe]:  Aimee, thank you for that wonderful presentation. We have several questions here so we will get to them. “I have been prescribed Dapsone as a post-transplant antimicrobial. Could that drug be responsible for my neuropathy?"

(27:46): [Aimee Chappell ANP-BC]: It's not a known frequent side effect of Dapsone. That said, I did look up the frequency of neuropathy in Dapsone, and it was noted in post-marketing data. So, it has been reported by patients. It hasn't been reported enough that they have a percentage to allocate to that symptom, but it has been reported. It's possible, but if it is, it would be extremely rare.

(28:19): [Marla O’Keefe]:  “Can compression socks help with neuropathy, and if so, what strength do you need to use?"

(28:28): [Aimee Chappell ANP-BC]: With compression stockings, the best thing to do is do the 15 to 20 millimeters of mercury compression. And you should never go tighter than that unless your healthcare provider recommends it. Compression stockings can be helpful. In case anybody doesn't know, compression stockings compress your skin. They're very helpful with any swelling or fluid retention in your legs. So they can help with pain and the burning sensation. It's not known to help numbness in the feet. Some people complain that compression stockings cause numbness as well.

(29:20): [Marla O’Keefe]: “How important are exercise and muscle tone in controlling neuropathy? And then the other part of the question is, what are the best types of exercise? Yoga versus weightlifting, running versus walking?"

(29:39): [Aimee Chappell ANP-BC]: That's a great question. Exercise is important in different ways. First of all, It depends on what kind of neuropathy you have. If it's motor neuropathy, it's extremely important to help strengthen those muscles. Additionally, we know that obesity is a contributing factor to neuropathy and can make it worse. So, it is important to have an overall good exercise routine. The type of exercise routine wouldn't matter as much. Just make sure you're fit and getting good exercise for your muscles.

 (30:25): [Marla O’Keefe]:  “What vitamins do you look at in the blood test?"

(30:31): [Aimee Chappell ANP-BC]: They're looking at B12 specifically. B12 is a common cause of peripheral neuropathy, and it's treatable, so they're looking to ensure that you don't have a deficiency in B12.

(30:50): [Marla O’Keefe]:  “Is acupuncture helpful for foot neuropathy and back pain and for feeling better, in general, following an autologous transplant?”

(31:00): [Aimee Chappell ANP-BC]: There's a lot of evidence that shows that acupuncture, and other therapies that are similar to that, can help for our overall health, especially when dealing with cancer and treatment like a transplant. Several studies show it is helpful, as well, for peripheral neuropathy, including of the lower extremities. When they looked at all the studies, they couldn't say that there was enough of an improvement in symptoms, especially long-term, to say that it's a helpful strategy. Most providers would say it won't hurt you, and it's worth trying because some say it helps. Post-transplant or when you have cancer, you should always check with your healthcare provider before starting acupuncture to ensure it's safe.

(32:06): [Marla O’Keefe]:  "Can you talk more about using CBD (Cannabidiol) and pain management for neuropathy?”

(32:15): [Aimee Chappell ANP-BC]: CBD (Cannabidiol) is very helpful for general pain syndrome. Similar to what we discussed with cognitive behavioral therapy, we know CBD works for pain syndrome, so the presumption is that it would help with peripheral neuropathy-induced pain, but that hasn't been proven yet.

(32:42): [Marla O'Keefe]:   “Are all types of neuropathies treated the same? I have idiopathic neuropathy in my feet, possibly from a pinched nerve in my back. All tests are inconclusive, and I am 10 years post-transplant.”

(33:03): [Aimee Chappell ANP-BC]: All signs point to the pinched nerve causing that pain. So if you can't fix the underlying cause, the pinched nerve, then you'd want to try all of these other strategies we discussed, such as physical therapy and the other symptom management things we discussed. In my experience with pinched nerves, physical therapy is the most effective strategy.

(33:35): [Marla O'Keefe]: “Where can I find exercises for foot neuropathy?"

(33:42): [Aimee Chappell ANP-BC]: That's a great question. I wish to point you to an actual website, but I would have to research some to ensure I find a dependable site first. If you don't have a neurologist or a physical therapist who can point you in the right direction, I would ask your healthcare provider to look at that for you. Many are out there, but I wouldn't recommend them without researching them first.

(34:18): [Marla O’Keefe]:  Someone was referencing one of your slides and asked, "Did you mention that carpal tunnel syndrome can be caused by neuropathy, or did they hear that wrong?"

(34:29): [Aimee Chappell ANP-BC]: No.  The carpal tunnel is a type of entrapment neuropathy. It's called that because the wrist movements are trapping the nerve.

(34:52): [Marla O’Keefe]:   "What can you tell me about using polychromatic infrared therapy for neuropathy?"

(35:05): [Aimee Chappell ANP-BC]: I think this references the LED infrared therapy, and there is some evidence that it's helpful. The issue is that they did not see long-term effectiveness. They only saw short-term effectiveness with it, which may be sufficient for people dealing with neuropathy. But the bottom line is that there's more work to be done to say how long or how frequently you need the therapy to be helpful.

(35:46): [Marla O’Keefe]:  "Is there any data on which drugs used for BMT patients are known to cause higher incidents of peripheral neuropathy?"

(35:56): [Aimee Chappell ANP-BC]: The evidence shows that the immunosuppressants increase the risk for peripheral neuropathy, so sirolimus, tacrolimus, prednisone, and cyclosporine. All those suppress your immune system, which is important, so you don't stop them because of the risk of peripheral neuropathy. Remember, the risk is very, very small in the transplant population. But those are the drugs that most frequently seem to cause neuropathy.

(36:30): [Marla O’Keefe]:  "This question comes from a 33-year-old female with POEMS. She's three years post-transplant and has peripheral neuropathy and chronic muscle spasms one year after the transplant that have not yet been resolved. Does this happen post-transplant in patients? Her doctor suspects it is her nerves awakening."

(36:56): [Aimee Chappell ANP-BC]: POEMS is tricky because some neuropathy associated with POEMS doesn't resolve, unfortunately. But everything else must be ruled out if you're having new symptoms. So, the compressed nerves, through imaging, need to do nerve conduction tests to ensure there's no other cause before saying it's the POEMS. Typically, once POEMS is controlled after a transplant, you don't see worsening neuropathy, so you want to ensure there's no other cause. If it's just stable neuropathy you've had since being diagnosed, then it's probably just the POEMS, and, unfortunately, all of that neuropathy does not go away.

(37:43): [Marla O’Keefe]:   "How often should you check your vitamin levels? I was taking B complex and had a high level, which also causes neuropathy."

(37:58): [Aimee Chappell ANP-BC]: Most providers will only check the vitamin levels in neuropathy every few months, like every three months. Some will do it every six months. It's dependent on the provider and what their preference is. But you don't want to check it more frequently because you won't see enough fluctuation more often than every three months.

(38:21): [Marla O'Keefe]: "How can I better treat my neuropathy so that I can sleep without pain?"

(38:30): [Aimee Chappell ANP-BC]: That's tricky. Neuropathy can be subtle to almost debilitating. So I feel for you. But I would look back at the slides because the symptom management that we talked about is the available therapy. If it's impacting your sleep, many patients in that situation do require medications such as antidepressants. Antidepressants aren't used for depression. They're used to treat the symptoms associated with neuropathy.

(39:16): [Marla O’Keefe]:  This tags onto the CBD question. "How about THC (Tetrahydrocannabinol) for neuropathy?"

(39:25): [Aimee Chappell ANP-BC]: It's very similar to CBD (Cannabidiol). There's not much evidence out there for either, and a lot of work is being done to study these more. But currently, there are no guidelines for how much, how frequently, or how helpful it is because there haven't been enough studies yet.

(39:55): [Marla O’Keefe]:  "How would you label neuropathy that comes and goes? It's not constant, but it does happen periodically."

(40:03): [Aimee Chappell ANP-BC]: That's common with neuropathy. Neuropathy symptoms are not always constant symptoms. They can come and go depending on the temperature and movements in the body. And sometimes, it has nothing to do with either of those. It just can come and go. On the medical side of things, we describe it as intermittent symptoms of your neuropathy, and it's treated the same as if it was there all the time.

(40:37): "What about treatment with ReBuilder® to stimulate nerves?"

(40:45): [Aimee Chappell ANP-BC]: I don't know much about that. You should talk to your neurologist about that because I can't guide you.

(41:01): [Marla O’Keefe]:  "I have not been wearing shoes since isolating with COVID and chemo treatment. My feet are now getting dry and cracking. Do you have any suggestions?"

(41:16): [Aimee Chappell ANP-BC]: I don't know if you have neuropathy. If you do, I recommend wearing shoes in the house, too. But if you do not have neuropathy, just ensure you moisturize well with thick creams or Vaseline®. At the same time, you don't want your feet to be moist because it can create an environment for infection. So yes, cream, but try not to have them wet. Put socks or anything like that and shoes on top of that.

(41:59): [Marla O'Keefe]:  "Is there any evidence that soaking your feet in apple cider vinegar is helpful?"

(42:07): [Aimee Chappell ANP-BC]: That's good. I haven't heard of that one. Apple cider vinegar is used for many things now, which is cool. But I haven't heard that one for your feet, so I can't back that one up.

(42:29): [Marla O’Keefe]:   "Are there any breakthroughs in treating neuropathy from chemotherapy in the feet?"

(42:37): [Aimee Chappell ANP-BC]: I wish I could say there were. I think the biggest excitement out there is the antidepressant use that's on the market now. But there are a lot of trials right now that are exciting. So, if you are interested, check out different available clinical trials. You can go to clinicaltrials.gov and put in peripheral neuropathy and see what's available because, with those trials, we can then develop more treatments available.

(43:20): [Marla O’Keefe]:  “Thank you. Okay. This is a long one here. This person is an AML post-transplant patient. They were dealing with some GVHD. They were on and off Jakafi, and they were having some problems. They were getting heated up whether they were inside or outside. Pins and needles were felt in their body from head to toe. She said it doesn't happen in the shower. Is this neuropathy, or could it damage my sweat glands from chemo? Have you heard of this?”

(43:55): [Aimee Chappell ANP-BC]: Yeah, that's tough. You can have damage to your sweat glands, but the pins and needles sensation sounds different. Interestingly, it happens in the whole body like that. I would say that this person should probably discuss this with their healthcare provider because you may want to have some nerve conduction tests done to see what is happening with those nerves. Are they just hyperactive, or is there damage to them? I think you need some testing done.

(44:30): [Marla O’Keefe]:  "Besides the tingly, numb feelings I get in my fingers and toes, I get pain right on my nail beds. Does neuropathy cause that, and what treatment could help it? I lost all my nails during chemotherapy."

(44:52): [Aimee Chappell ANP-BC]:  That's difficult because you can get so much skin and nail damage from the chemotherapies, which are separate. But the pain that you're describing does sound like neuropathy.

(45:10): [Marla O’Keefe]:  This person is nine years post-transplant, and they have carpal tunnel in both hands. They had surgery and lost feelings in their fingers. They now have cramping pain and loss of strength in both hands. Where is it best to turn for diagnosis and treatment for something like this?

(45:30): [Aimee Chappell ANP-BC]: Wow. Yeah. That's terrible. You need to see a neurologist to have some motor nerve testing. The EMG testing we talked about, in addition to the nerve conduction test, to see if there's motor nerve damage or what exactly is happening.

(45:53): [Marla O’Keefe]:  This person has neuropathy right now. Will there be an improvement over time, or does it get worse? Is there any sure answer?

(46:05): [Aimee Chappell ANP-BC]: It depends on the cause whether it's going to improve. It varies greatly depending on if you can eliminate the cause. And some of the causes, some of the chemotherapy-induced neuropathy, do not go away.

(46:29): [Marla O'Keefe]:  "Other than stretches, can you recommend anything else for muscle spasms?"

(46:39): [Aimee Chappell ANP-BC]: There are helpful muscle relaxants, but those have a lot of side effects. So, you'd have to talk to your healthcare provider about those.

(46:55): [Marla O'Keefe]:  “Does Nervive® help?"

(47:05): [Aimee Chappell ANP-BC]: I'm guessing they mean the cream Nervive®. I haven't had any of my patients use it successfully, so I can't back it up, but I also can't say it's not helpful. It may be helpful. You have to try it to see.

(47:27): [Marla O’Keefe]:  "I get cramping in my hands occasionally. Is it from overuse? This person crochets hats for cancer patients. Or is it related to neuropathy? It gets better if I don't use them as much."

(47:42): [Aimee Chappell ANP-BC]: That's a great question and thank you for crocheting hats. That's so nice. It's tricky to say if that's neuropathy because one of the most common places for us to get arthritis is in our hands, and that can cause cramping as well with overuse. So doing something fine like crocheting could just cause an aggravation of arthritis. You may need an exam done by your healthcare provider to distinguish the cause.

(48:18): [Marla O’Keefe]:  "Should I avoid wearing fingernail polish if I have finger neuropathy?"

(48:27): [Aimee Chappell ANP-BC]: I have never been told by a neurologist that any of my patients can't wear nail polish for finger neuropathy, so I would say it's okay from my experience.

(48:52): [Marla O’Keefe]:  “How do I eliminate diabetes as an underlying cause of my feet neuralgia after CAR T-cell therapy? My A1C just now spiked to 7.5 before the day zero of CAR T?"

(49:08): [Aimee Chappell ANP-BC]: So that was going to be my question. Is it controlled, or is it uncontrolled? If it's uncontrolled diabetes, if your A1C just spiked, unfortunately, it could be contributing. Often, we're not able to say 100% what the cause is, and many times it's multifactorial, meaning it's many things, not just one. It's a combination of things. So, you may never be able to say for sure, but I would say get those numbers under control.

(49:43): [Marla O’Keefe]:  "Is soaking feet for 30 minutes in warm water and Epsom salt effective for tingling in the feet and toes, which was caused by Velcade induction treatment, I'm now nine months post-transplant?"

(49:57): [Aimee Chappell ANP-BC]: I'm sorry to hear you have that. Yes. Some people think that Epsom salts work well. Other people say they don't use Epsom salts but instead use cool water daily. It may be a trial and error to see which is more effective for you.

(50:16): [Marla O’Keefe]:  "I started getting neurological tingling in my toes after BR chemo (Bendamustine/Rituximab) in 2016. This neuralgia and blood glucose have increased since I've had R CHOP and CAR T therapy. Are there any patient empowerment options that are available?"

(50:42): Knowledge is the most empowering thing for patients. So, educate yourself. Check out clinicaltrials.gov to see what's out there. Neuropathy can last a long time, impacting your quality of life too. So, your situation is not unusual, unfortunately.

(51:12): [Marla O’Keefe]:  "I had numbness in my feet initially from fractures from multiple myeloma. I developed some pain from Velcade in my feet, and it got worse after Melphalan. My feet burned terribly after walking. The transplant doctor said it would disappear, but it is still there. I am frustrated and sad. I don't want to take any more medication. I'm already on morphine extended release and gabapentin. What do I do?"

(51:47): [Aimee Chappell ANP-BC]: I feel for you. Unfortunately, Velcade® is one of the most common causes of peripheral neuropathy. It's rarely a side effect from Melphalan, so I have a feeling it was just neuropathy still coming on from the Velcade® because it can continue to get worse even when you're off of it those first couple of months.

(52:15): Unfortunately, when it's from these chemotherapies, especially Velcade®, it doesn't go away fully. That doesn't mean there aren't strategies to improve it, which we discussed earlier. I would suggest going through those options that I discussed earlier and seeing if there are any that you haven't tried. I wish I could say there was a cure for your situation, but I'm hopeful for the future that there will be.

(52:50): [Marla O'Keefe]:  “Can massage or manipulation with golf balls and tennis balls be effective for foot and toe tingling?”

(53:01): [Aimee Chappell ANP-BC]: Many people think massaging the site is very helpful, so yes, I would say try it and see if you're one of those people that thinks it's helpful.

(53:16): [Marla O'Keefe]:  There are a couple of questions about the chance of the nerves recovering. "They have peripheral neuropathy. They had a transplant, and then there were chemo drugs, and they are doing PT five days a week, and they're still not feeling great. Is there any chance that their nerves will recover?"

(53:44): [Aimee Chappell ANP-BC]: There is. It depends on the cause of the neuropathy and how much damage is done to the nerves to know if it'll improve. But many neuropathies do improve with time and therapy. If you're doing physical therapy already, I recommend adding one of the other strategies.

(54:14): [Marla O’Keefe]:  "Why do they continue to use Velcade® as induction therapy when there are other drugs available?"

(54:22): [Aimee Chappell ANP-BC]: That's a tough question. In my practice, we don't use Velcade® for that exact reason. But it is an effective drug, and it's one of the older, more trustworthy drugs because it's been around for so long and is very commonly used. I think, in the future, they may move away from Velcade® because this side effect can be so debilitating. So, I agree with you.

(54:58): [Marla O’Keefe]:  "What is the evidence to help me decide whether to take alpha lipoic acid for neuropathy in my feet? One doctor recommended 600 milligrams a day. Another says there is insufficient evidence."

(55:04): [Aimee Chappell ANP-BC]: They're both right. There's some evidence, but it's insufficient to guide how much, how frequently, and how long to take these supplements. It depends on the person. Some people are more willing if they are out of options; they're more willing to try things even if there's not enough evidence to say to do it. So, you can always try and stop it if you do not see any improvement.

(55:50): [Marla O’Keefe]:  "With regards to acupuncture, is it okay to do it if I'm still on tacrolimus two times a week? And someone mentioned trigger point massage. Is that a thing that is okay? I was not allowed deep tissue massage at the beginning of my treatment."

(56:09): [Aimee Chappell ANP-BC]: Right. Great question. That's why earlier, when discussing acupuncture, I mentioned that you should always get your healthcare provider's approval first. Some of these remedies are not benign. They can cause problems. So, you need to get that one cleared by your healthcare team.

(56:35): [Marla O'Keefe]:  Okay. And on that note, we must thank you very much on BMT InfoNet's and our partners' behalf. Thank you, Ms. Chappell, for your very helpful remarks, and thank you, the audience, for your excellent questions.