Managing Neuropathy after Transplant

Peripheral neuropathy is common after transplant.  Learn the symptoms and effective treatment options.

Presenter: Danielle Roberts PA-C, Emory University Winship Cancer Center

This is a video of the workshop presented at the 2019 Celebrating a Second Chance at Life Survivorship Symposium.

30-minute presentation, followed by 30 minutes of Q&A


Peripheral neuropathy is damage to the nerves, usually in the hands and feet, that can cause pain, numbness, tingling or weakness. Peripheral neuropathy after transplant is usually caused by chemotherapy or graft-versus-host disease, but there are treatments that can help.


• Peripheral neuropathy occurs in 2.4% of the general population, and 8% of people over age 55.

• Older patients, those who had peripheral neuropathy prior to transplant, a history of smoking and impaired renal function increase the risk of developing peripheral neuropathy after transplant

• Treatment may consist of topical medications or oral medications.

• Physical and occupational therapy are critical in managing peripheral neuropathy.

• Patients should practice good foot care to avoid additional complications.

Key Points:

2:51: There are different types of neuropathy: sensory, motor or autonomic

6:22 Certain types of chemotherapy can cause peripheral neuropathy

6:58 Graft-versus-Host disease can cause peripheral neuropathy

7:43 Tests for peripheral neuropathy

9:51 Topical agents are first line of treatment and interfere less with other medications.

11:52 Vitamin B12 helps with peripheral neuropathy

13:07 Compounded topical agents give relief without having to take a pill

16:20 Second line treatment for peripheral neuropathy is oral drugs

24:45 Physical therapy and occupational therapy are essential to control peripheral neuropathy

26:27 Good foot care is critical for people with peripheral neuropathy

Transcript of Presentation

0:00 Introduction.  Well good morning, thank you all for having me here. It is an honor to be here with all of you guys. You are the reason why I do what I do and I love my job, I wouldn't change it for anything in the world. Just talking with everybody, you guys are from all over the country, so it's amazing that you guys have all been here for this, and so I hope that you're finding it all valuable. If you have any questions and we can't get to you during the session, I will be here afterwards, I'm doing it again at 9:45, so please feel free to stop me, ask me questions.

So today we're going to talk about managing neuropathy after transplant, these are our objectives for today.

0:38 So let's talk first what is neuropathy, so peripheral neuropathy is not just a single disease, it's a general term for a series of disorders that result from damage to the body's peripheral nervous system. Peripheral neuropathy occurs when the nerves are damaged or destroyed and they can't send the messages from the brain to the spinal cord or the muscle, skin, or other parts of the body. And when this damage occurs, you get numbness and pain in these areas.

1:06 And so how does the brain perceive pain? We have pain receptors everywhere except in your brain. And so if you think about it, if you have your hand and you get stuck by something or if you get it burnt, you have nerve cells that are in your hand and it sends those nerve impulses that go up through your arm, in through your back, and then it goes up into the brain, and it's the brain's job to respond to that and say, "Hey move your hand back, that's hot or that hurts."

1:31 Peripheral neuropathy interrupts the signal to the brain. When you have peripheral neuropathy what happens is like static that goes through that signal. So if you think about your TVs, when you have static on the TV, the signal's disrupted. And that's the same thing that happens with neuropathy, you have disruption of that signal, and so then you have changes in which the body perceives pain. It may make it amplified so you have more pain, it may completely disrupt the signal, in which you have no pain and you get that numbness or that deadness sensation.

2:01 Incidence of neuropathy. In the general population, about 2.4 percent of people have neuropathy and those incidents will increase to greater than eight percent in patients over the age of 55. It's more common in people with diabetes, HIV, and those receiving chemotherapy. Other causes of neuropathy can be nutritional, B12 deficiencies, iron deficiencies is also another common cause, the underlying disease for which you had your transplant, people with kidney disease, alcoholics, and then are rare immune mediated neuropathies.

2:33 Risk factors for developing neuropathy. Your age, it's higher risk when you're older. If you had neuropathy prior to receiving chemotherapy, you're more likely to have neuropathy after chemotherapy, a history of smoking, and then impaired renal function with reduced creatinine clearance.

2:51 Neuropathy is most often described as pain, numbness or tingling. There are multiple different ways in which we categorize or we describe neuropathy. Sensory is the most common way that you describe it, and that's that sensation of the pain, it's the numbness and the tingling. And so when I'm seeing patients in clinic, the most common thing, I'm like, "Can you feel your hands or your fingers? Tell me what it feels like." Some people will say that it feels dead or it's constantly cold, they feel like their fingers are blue on the edges of the tips, or they always have to wear gloves because they're cold and again, that's that disruption of the signal. They could have tightness where they feel like they can't bend their hands or you can't bend your legs or your feet. Burning is very common. And then the most common is the shooting and stabbing pains. I do have some people that have sensitivity to contact, so I have to be very careful when I examine them because if I go to grab their hands or their legs too hard, that pressure sensation that I'm applying can cause their neuropathy to be worse and can increase that pain sensation.

3:48 You can have motor neuropathy, which is more commonly characterized as weakness, where you can have feet slapping, feel like you're always walking on rocks or you can't quite feel your foot, so you have trouble lifting your feet, or you can have a foot drop sensation, you can have trouble rising from a chair or toilet seat, and then you have decreased grip strength. So what's most commonly said in clinic is, "I'm having trouble opening up bars or stop bars, I'm having trouble opening up bottles or cans, or ripping open bags of potato chips and things. And those are all part of motor neuropathy.

4:21 Autonomic neuropathy affects things you commonly do without thinking. And the least common that we see is things that effect your autonomic nervous system. Your autonomic nervous system are the things that you don't commonly think about, so these are your body functions like your bowel movements or your breathing. As a result of this, your neuropathy may experience lightheadedness and dizziness, especially when going from a sitting to a standing position. It's that big first rush where you feel a little off balance. You can have dry eyes, dry mouth, feeling full after eating a few bites or a small meal.

The literature says constipation although I will say in practice that's not what I see. More commonly what we see is a lot of diarrhea. People with multiple myeloma commonly will experience this after having lots of bortezomib or Velcade. You can difficulty voiding because you don't feel the sensation, lack of sweating, and then unfortunately for men, you can experience erectile dysfunction.

5:15 Stocking glove pattern. So now we've talked about the symptoms, we've talked about the definition, so how do we characterize it in clinic? When we characterize it in clinic, we commonly talk about a stocking glove pattern. And this is our way of telling how severe your peripheral neuropathy is. So when we're examining you and we're asking you questions, we want to know where it is, how you describe your pain, but then we need to know where it is and how far does it progress up your body.

5:38 And so peripheral neuropathies of many different causes will present with similar signs and symptoms. So even people who have diabetic neuropathy or HIV associated neuropathy, as well as chemotherapy-induced neuropathy will all kind of have these stocking glove type patterns. And where you get the neuropathy, it will start in your fingertips or your in your toes and then it spreads down your arms or up your legs. The more area that it spreads to will cause you to have more severe neuropathy. The most common is the length-dependent neuropathy, so the sensory involvement is most severe. Because if you think about it, that nerve impulse is traveling all the way from your back, it's got to go all the down your arms or all the way down your legs, and that's the most common that you're going to see in clinics.

6:22 Chemotherapy-induced peripheral neuropathy, depends on the type of chemotherapy that you receive. It's reported with rates varying anywhere from 19 to more than 85 percent of people. The most common types are your platinums, your taxanes, thalidomide, lenalidomide, bortezomib, vincristine, and brentuximab vedotin. Toxicity may occur either with a single dose or more commonly what we see is the cumulative dosing. The more that you receive that drug, the more insult to injury, the more likely you are to experience peripheral neuropathy as a result.

6:58 Graft-versus-Host disease can cause peripheral neuropathy:  It can be seen as a manifestation of Graft-versus-Host Disease, it's commonly associated with chronic Graft versus Host Disease. The median time between transplant and the onset of neuropathy is about six months. Neurological Graft versus Host Disease is more often affects the peripheral nervous system, so that's that sensory nerve that you start to feel. It's a higher prevalence in patients with Scleroderma. So Scleroderma is the tightening of the joints or the tightening of your skin, where you can't move it, you can't bend it. So if you're having tightening of those areas, you're going to have disruption of that signal, so again, you're starting to get the pain and the burning sensation. It's usually associated with long-term immunosuppression and again, that chronic Graft versus Host Disease.

7:43 Testing for neuropathy: So now we've talked about it, we've described it, so how do you test for it? So I'm a physician assistant, I am not a neurologist, my specialty is bone marrow transplant. So how I test for neuropathy might be slightly different than how it would be tested if I were to send you to a neurologist. I'm going to start with a using a monofilament, this is just basically a nice piece of plastic. And what I'm going to do is ask you to close your eyes and then I'm going to press on the bottom of your feet or on the bottom of your hands. And I'm going to ask you if you can feel it, can you tell me is it on your right foot, your left foot? If you can feel it or if you can't feel it can give me signals as to where your neuropathy is and how severe is it, is it only in your fingertips or is it progressing down through the palm of your hand? We can also use vibration testing, which is using a tuning fork. Do you feel the vibration? Can you tell me when the vibration stops?

You can do a pin prick test, which is sharp touch. And again, how severe is the neuropathy? Can you feel when I prick your fingers? Where can you feel it? Is it only in your fingertips or is it all the way into your hand where you can't feel it? Other testing should include your manual muscle examination, so how do the muscles feel? Are they getting smaller? Are they weaker? We should test your reflexes. This is especially important when you're walking, a lot of people will start to have foot drop.

Does everybody know what foot drop is? So foot drop is where you lose, you can't feel yourself raise your foot up. So I had one patient that her family came in, they're like she walks like a flamingo. And I was like, "What do you mean she walks like a flamingo?" She would take her foot up and then she would place it down because she couldn't feel herself and she was so worried about dragging her toe and falling that she always lifted up. And it was only in one leg, it wasn't in both legs. 

So it's incredibly important when we're in clinic that we also make sure we watch you walk. So if we're telling you to get off that chair and get up off the bench, walk for us so we can tell what's going on, how severe is your neuropathy, what's your risk going to be. So we want to make sure that you're safe at home and we want to make sure that you don't have increased risk of falling, so what do we need to do in terms of treatment to help you out with this? We don't want a lot of flamingos around there.

9:51 Topical agents are first line of treatment. Now, onto treatments. There's lots of treatment options. First-line therapy should be your topical agents. There are patches like lidocaine, there's anti-inflammatory, these are available through a prescription. And then there's creams, and capsaicin is available over the counter. Capsaicin is the active ingredient like in chili peppers, but it can be quite good at controlling, especially that burning sensation you get in your feet.

There are oral agents, and we're going to talk more about these. And then there's mechanical things that you can do, like massage, acupuncture. First-line therapy should be soaking your feet in the water, your Epson Salt soaks are quite good for you. These are high in magnesium, magnesium can be a great supplement to add into your diet to help control some of the symptoms of neuropathy. There are over the counter pain medicines like your acetaminophen and your non-steroidals like ibuprofen. Lidocaine is available as a prescription and over the counter. You can have a 5% patch, which you can place a maximum of three patches daily for 12 to 18 hours. And then you should do a trial for three weeks. And why we say that is, initially most people won't get immediate results, but if you continue to use these, then you may find that it's actually helping, so we always challenge people we're not trying to torture you, but we do challenge you to keep going to see if you'll eventually have some relief of doing this.

The great thing about using patches or creams is there's not a lot of significant adverse events to doing this. The main thing that you have to watch out for lidocaine patches is you should place them to any open or oozing wounds. So if your feet have open sores, that's not the best place to put your lidocaine, that's not going to feel very good to you there. There are combination gels and creams that you can also use, these are available mostly by prescription and they do have to go through a compounding agent, we're going to talk more about that as well.

11:52 Nutritional supplements help with peripheral neuropathy: The other things that I generally start is I'll start nutritional supplements on patients. Because your B vitamins are so important to your neurological health, then I'll usually have patients go ahead and start a complex B vitamin. Now, if you go to your local store you're going to find there's a thousand different preparations of B vitamins. There's super B's and there's mega B's, they come as gummy bears, they come as dissolvable chews, and then of course there's the ones that you can swallow. I always tell patients to find a good B complex vitamins. Whole Foods, if you have one in your area, has a 365 brand that's quite good, and then I like the Nature Made Vitamins as well too. But a lot of depends on kind of what you find is easiest for you to be able to swallow and handle. So there are some people that prefer to have the gummy chews versus having an oral medication that you're swallowing into your stomach.

Magnesium is another supplement that I'll commonly start. You have to be careful with magnesium, magnesium is a natural laxative, so we have to watch the doses, especially if you already have a lot of diarrhea because of your neuropathy. Adding in too much magnesium is not going to help you any and you're going to be quite upset with me.

13:07 Compounded topical agents give relief without having to take a pill. I would encourage you to talk to your physicians about compounded topical agents for your neuropathy. I like these for a number of reasons. The first reason is it avoids the GI tract, there's lots of benefits to doing this. One of the greatest benefits is you're already on a lot of medications by virtue of your transplant itself or your underlying disease and so a lot of times you're already nauseated just from the amount of medications that you're taking. So me asking you to add in yet another one to three different medications to control your symptoms can be quite distressing.

The other thing is it's already causing a lot of nausea, so again, adding in those medications. And the other part is, a lot of your medications you can't take with this medication. Or if you take this medication, you have to wait 30 minutes later to take another medication. So applying topicals allows you to have another source to control the symptoms without interfering with your other medications. You get a greater concentration of the drug, it's delivered directly to the area which it's applied. When you're taking oral medications, because they have to pass through your GI system, and they have to be broken down by the kidney or the liver, then you get less of the drug that actually makes it to the site in which you want it to go to.

You're also not dependent upon the blood flow to the delivery of the site, and so for a lot of people who already have neuropathy, some people will have vascular disease as well too, and you have limited blood flow to that area so you're going to have limited amounts of the drug that's going to be delivered to that area. You'll have lower systemic drug levels because it's applying directly through and it's not circulating through the blood system. So you have decreased toxicity and then you have decreased interactions with other drugs. This can improve your compliance, because again, you're not trying to figure out where in all these medications that you're taking, where do I put it, do I put it in the morning, do I put it with lunch, do I put it with evening? You're just putting it on your feet. And a lot of times, rubbing your feet can feel good too, so then you're getting an added benefit for that.

You can use multiple ingredients, and so you can have your anti-inflammatory, like your non-steroidals, ibuprofen or Diclofenac. You can put numbing agents with it like your lidocaine. You can add in vitamins like magnesium, B12, and then you can add in other supplements to this. And so the great thing about doing this is a lot of times taking all those medications in your stomach is not going to make you feel very good, but if you're just rubbing it onto your feet, you're getting all of the benefits of what these drugs can offer you. And then you have flexible dosing and concentration. So where a lot of times we can change and give you a little bit more numbing medicine, drawback on the pain medicine part if you don't like that, or if it's causing irritation to your skin, you can correct some of the concentrations in order to give you the benefits of the drug.

Most of these, again, are available through prescription only. They are done through a compounding pharmacy, so challenges doing those is, one, they can be quite expensive. Insurance may or may not cover it. And then it's the timeframe in which you have to get it. So it takes usually most times about a week for you to get these medications. But again, I would challenge you all to speak to your physicians about this because it can be a great source to treat your neuropathy.

16:20 Second line treatment for peripheral neuropathy are oral drugs. After my topicals, I'm going to move onto second-line agents. And these are most commonly going to be your oral medications.

I will tell you in this whole list, I'm going to start with gabapentin first. It's my drug of choice, I like gabapentin for a lot of reasons. One, it's really inexpensive, so patients who don't have insurance, there are like Good RX or other places that you can get fairly cheaply. It also has some flexible dosing patterns, and it has a flexible dosing schedule, so you can start off with 100 milligrams at night, you can build up to almost 900 milligrams three times a day. Have to watch your kidney function with that, but it does have the ability to kind of go up and down on the dose, based on how you're tolerating and how it's controlling your symptoms. The main side effect though is it does cause people to be quite sleepy. One of the other benefits of gabapentin is it helps with itching, so if you're getting a lot of itching related to your neuropathy, it controls both, you get an added benefit of controlling the itch with controlling the pain.

You can tricyclic antidepressants. Amitriptyline is the more common one that you'll see used. There are antidepressants that change the brain chemistry, these are commonly called SSRIs is what you'll hear. Duloxetine, Cymbalta, is the most common one, this is FDA approved for chronic pain. And then venlafaxine, which is Effexor, is another drug that is commonly used to treat chronic pain associated with neuropathy. Pregabalin, or Lyrica, is FDA approved for the treatment of diabetic neuropathy, so using it for chemotherapy-induced neuropathy has its challenges. Typically, if I can prove that a patient failed gabapentin, then I'm more likely to get pregabalin paid for by your insurance.

There are other medications that you can use, there's anti-epileptic medications, Carbamazepine is more commonly used. Pain medications, tramadol, you have oxycodone, which is both long-acting and short-acting, and then morphine sulfate, both long-acting and immediate release medications.

Now if we've gone through all of these and I'm having trouble controlling your neuropathy, this is the point at which I'm going to refer you to a neurologist. The neurologist does have the ability to test your neuropathy, and they can use nerve biopsies, they can do nerve conduction studies in order to find how bad your neuropathy is, are you getting some nerve conduction with that. And so usually once I've gone through this, I'm sending you to neurology.

18:54 Does marijuana help with peripheral neuropathy?  Now the most common question that I'm going to get in all my clinics is what's the role for medical marijuana and this is going to vary depending upon the state in which you live. I live in Georgia, marijuana is not legal in the state of Georgia. It can be difficult or easy, depending who you know and who your contacts are, to get this. The data for marijuana in the use of peripheral neuropathy is not that great, I'll tell you. It is very good at treating chemotherapy-induced nausea and vomiting, but the data doesn't suggest that it has much benefit with peripheral neuropathy. However, if we've gotten to the point that we're asking about this, who am I to tell you not to try it because if it's going to offer some type of relief for you, then we should give it a shot.

At Emory, we had sent everybody to the supportive oncology, that's who does our medical marijuana cards. If patients can get it from other sources, my general rule of thumb is bake it, drink it, don't smoke it because we don't want you inhaling things into your lungs. As we've talked about earlier, smoking can increase your risk of neuropathy as it is. In the studies, they said this should be used for refractory neuropathic pain after failing two to three lines of prior therapy.

There are multiple ways in which they tested these in clinical trials. The CBD Oil, the highest dose in the trials was about 30 milligrams per day. CBD Oil is available on Amazon, there's lots of ways to get it. There are THC sprays, and then there are your synthetic THCs. These are your prescription-available medications. You have Nabilone, which is one to two milligrams twice a day, and Dronabinol, that one is Miranol, which is 2.5 to 10 milligrams twice daily. These are available by prescription only, they do require a physician and a written prescription in order for you to receive these. The side effects are the same no matter how you got it, so whether you did it from the oils or you did the pills, you have psychoses, your euphoria, paranoia, and hypotension were seen.

In the studies, when they looked at this interesting enough, people who had a history of marijuana exposure or use were less likely to have any side effects compared to those that were naïve to marijuana and that was especially true when looking at psychoses or euphoria with it. One of the other good side effects with using medical marijuana is it very good at increasing your appetite, so everybody wants their Doritos and their extra pizza when they got their marijuana, which is great because that tends to be one of the side effects also when you're going through all of this. You don't have a very good appetite, you have some nausea and vomiting, if you've got some pain, we've got one thing which can fix all three which can be quite beneficial.

The old thing that our parents always told us, or that we always told our parents I should say, is that you can't get addicted to marijuana. Actually, not true from what they're finding in the studies. With prolonged use, you should not stop these without a taper because you can have some withdrawal side effects. So for people who are taking a very, very small amount of their Marinol, you should be able to stop that without any trouble, but if you've been taking the 10 milligrams, you're doing it twice a day and you've been doing this for weeks on end, these are when you're going to need to start stepping down that dose and not just cold turkey stop.

22:28 Yes ma'am?

22:28 Audience member: Is the tapering off the same for the Gabapentin.

22:31 Yes ma'am, yes it is. So yes, now very good point, so we should always taper off of gabapentin and Lyrica because you can have some pretty serious withdrawal symptoms with cold turkey stopping those. If you're on the smaller doses of gabapentin, like once a day, those I can usually stop without having a lot of side effects. But if you're taking it three times a day, especially if you're maxing out the dose, usually I'll start by dropping the middle of the day dosing and just do twice a day and then keep dropping it down from there so that we can safely get you off of it.

23:02 Acupuncture may help with peripheral neuropathy:  There is mechanical treatment that you can use to treat your neuropathy. I typically don't do this on its own, I'm using this in addition to some of the other medications. 

There's a lot of very good data out there for acupuncture in conjunction with some of the other medications. That is the one scenario that I will use on its own to treat neuropathy. I've had some pretty good results with using acupuncture and getting away from doing a lot of other medications. I do use it though with the topical creams. Acupuncture is a lot of times now approved by your insurance and they will pay for it, so I would challenge you all to call up your insurance and find out what your benefits are for acupuncture. 

If you're going to go to an acupuncture, at a lot of the major medical systems, like Emory, we have our own acupuncture center there so then we know that you're going to a safe, clean environment. They are putting little needles into your skin, so you do want to make sure that where you're going to is a reputable place. Make sure it's clean, make sure they're not reusing any type of needles because that's going to increase your risk of infection, especially when you're doing acupuncture for neuropathy, they're going onto your feet which is already at risk for infection, so we want to just make sure that you're doing it safely.

24:17:00 A TENS unit may help with peripheral neuropathy:  You can have a TENS Unit, which is where you're applying electrical currents basically to the area where you have neuropathy. This has been shown to be quite good for diabetic neuropathy, so we would expect it to be just as good for chemotherapy-induced or GVHD-induced neuropathy. I do use this with patients. The TENS Units are, in most cases, reimbursed by your insurance, so it just requires us to write a prescription for you.

24:45:00 Physical therapy and occupational therapy are hands-down the two most important things that you need to do in treatment for your peripheral neuropathy. You cannot control your neuropathy with just medication or treatment alone, you have to do the physical therapy for it. And I know that seems counterintuitive because you're already in pain and it hurts to walk, so why you want to go do more activity with that, but the data really does show that adding in physical therapy will improve your neuropathy and help alleviate the pain symptoms with it. Also to remember with neuropathy, you are getting weakness with that, so by adding in physical therapy or occupational therapy, if you're walking like you're flamingos, they can teach you how to walk safely so that you're not at increased risk for falling.

25:29:00 Massage helps some people with peripheral neuropathy:  Massage, plus or minus for people. If it hurts to be touched, massage is not going to be a great answer for you. If massage makes you feel a little bit better, why not? This is the one thing that I have the hardest time getting insurances to reimburse for our patients, but a lot of patients are willing to pay for that out of pocket. There are people that are out there that are specialized cancer massage therapists now, or they will be sports medicine massage therapists, so I would challenge you to look at that and go to those type of providers. They're going to understand what's going on with you, they're going to understand about your nerve conduction, and they'll be able to help target their massage therapy to alleviate your pain system symptoms. And hopefully not cause any damage to the area as well by applying too much pressure, or too much grip, or exfoliating, because we don't want them to rip the skin or anything, or bruise you if you're on blood thinners or anything else.

26:27:00 Good foot care is critical for people with peripheral neuropathy:  So we've talked a lot about what it is, we talked about how to treat it, but the other really important part is making sure that you have general foot care. And the most common symptom for neuropathy is going to be in your feet. So this is where you can't feel your feet, so you're at increased risk for having symptoms. Any small injury can result in a serious infection or sores. 

We had a gentleman recently who, his feet got infected, he unfortunately got gangrene in it and then lost all of his toes on his feet. So it is incredibly important that you continue to monitor those symptoms, report any injuries right away. You don't want to be cutting or filing corns or callouses. This is where a podiatrist is your friend. You don't want to use any chemicals on your feet, you should wear shoes or slippers at all times, and you don't want to apply any direct heat to your feet or your legs. We have had people get second degree burns because they can't feel the heating pad so they left it on for too long.

For your general foot care, you should inspect your feet daily, you should look for blisters, cuts, and bruises. Infection commonly will present itself with the redness and the red streaks, so make sure you're letting your providers know if you're seeing any of that, we want to start you antibiotics to keep it from getting worse. 

Your daily foot care should begin with washing your feet daily, again with lukewarm water. You want to test the temperature with your hands unless you have neuropathy in your hands, and then you want to test the temperature of the water either with your forearm here or using your elbow. Again, making sure the water's not too hot for you because you don't want to burn your skin.

You should use a mild, fragrance-free soap, and you should wash very gently. Cetaphil is a great product,     Aveeno is great products, these are the two that I most commonly suggest for patients to us. They're very mild, they don't have a lot of scent to them, so, they're not going to irritate the skin. You want to dry your skin by blotting or patting, you don't want to have a lot of friction or rubbing because this could increase breakdown on your skin. And at the end, you should apply a moisturizer without any alcohol or perfume. Alcohol is going to further dry out your skin, which can increase the risk for cracking and then the perfumes, again, can be very irritating to your skin, which can increase the risk for you to scratch it or rub it, which can cause infections.

You should have daily foot care. Cut your nails, make sure they're not too long. You want to make sure not to injure the surrounding skin, you should not ever go barefoot. If you cannot feel the bottom of your feet, you're not going to know what you're stepping on. You should always wear seamless socks, because again, if the seam is underneath your toes and they are rubbing, then you're going to get blisters from it. You should wear shoes or sturdy slippers at all times, even at night. What I'll commonly tell patients to do is to sleep in the socks that have the grip on the bottom of it because if you're getting up in the middle of the night, your lights aren't on, less risk of falling because you're slipping or you can't feel your feet. You should look inside those shoes before you put them on, you never know what's hiding in there.

And then you want to choose good footwear, this is not your time for your stilettos, ladies. You want a low heel, you want to avoid very, very long laces or straps, velcro is your friend. And they should be fairly lightweight. Big, heavy shoes are going to be hard. If you're already having weakness, having that big, heavy shoe is going to be hard to pick up and walk with.

That's what I got. So questions? Yes sir.

29:57:00 Question & Answer Session

30:07:00 Audience member: Do different causes of neuropathy have different pathways to the brain?  I have to say wow. I kind of came in here neutral, well it couldn't hurt, and the questions you've answered, I've wondered for 18 months why my hands feel like icicles.

Was very glad to find out I don't have some of the symptoms or problems from this issue, but ones that I never associated with it, you've given an answer to. And then things that I'd come up with my own, so this is more or less, thank you for answering a lot of unknown questions that I didn't even associate with the neuropathy. 

Now I had neuropathy prior to any cancer or chemo or anything, it was associated with high arches and nerve damage. And so I was already wearing inserts in my shoes to alleviate that, I went from needles in my feet every time I took a step to just numb. And I said, "Hey numb is better than needles". So are both the drug-caused and the more physically-caused [different] nerve issues or just two different things? All that really happened in my feet was the neuropathy moved up with the medications rather than staying in the feet.

31:44:00 Ms. Roberts:  Right, so in your particular scenario, from how I hear it, your question is was it two different kind of pathways or did we compound to one pathway. And the most likely answer to that is that we compounded your existing pathway. And one of the most important questions that I ask all of my patients, when I'm getting ready to start them on say, and I'm just going to use Bortezomib, or Velcade for instance, I'm going to do a good examination, I'm going to figure out where your baseline is because I know that drug is going to make it worse. And that's what we should do for everybody. It doesn't mean we're not going to give it to you, so to speak, maybe we start with a lower dose at first to try and alleviate some of those symptoms, it's all about kind of the risk benefit ratio, but the other part of that is we know it has the potential to make things worse. A lot of times what I'll tell patients is it's not a matter of if, it's more a matter of when and so it's making sure.

In your particular scenario what I would've done is probably go ahead and immediately started you off on the vitamin supplements and probably started you off on the topical creams at baseline not adding in a lot of the other medications yet because I want to move them later on. And then as your symptoms would've gotten worse, we should be asking you weekly and then hopefully either dialing back on the dose, changing maybe the dosing structure, or even moving on to a different agent so that we don't want you disabled. That's the worst thing, in my mind, that I could do to a patient is ignore the neuropathy symptoms and then have it so that you can't walk later on.

But the other part that we have to make sure that you guys are doing, is you have to make sure that you tell us as well too. We had one nurse, actually, who we asked her every single time that she came into clinic was she having any neuropathy. "No, no, no, no, I'm fine." And then all of a sudden she comes into a wheelchair, and we should've decreased her dose weeks ago. But she didn't tell us and if we don't know, we can't take care of it. Does that kind of answer your question a little bit?

33:45:00 Audience member: Does neuropathy ever go away? I got chemo-induced neuropathy. And I fought it for five months doing all of that stuff and finally gave in and started gaba, I take one a night, and it got rid of it, it was like a miracle drug. Well, it's almost gone. My question is does it ever go away?

34:03:00 Ms. Roberts:  It can.

34:03:00 Audience member: One time I tried going off gaba slowly and it came back with a vengeance. Do you recommend me trying something less strong than gaba at some point or does it never go away?

34:14:00 Ms. Roberts: So unfortunately, if you've still got it now, the likelihood that it's going to completely go away is going to be decreased. Our nerves can regenerate, so not everything in our body can repair itself and grow back, but our nerves can, so that's where it's incredibly important that when you're in your clinics and you're seeing your physicians, you're telling them what's going on because if we can intervene earlier, we can try and decrease the risk of it not being permanent. Unfortunately for some people, we can intervene the minute we know and then that's just your particular body's makeup. So it is more likely that it's going to be ongoing for you at this point because you said you're five?

34:51:00 Audience member: Well I got it during chemo, but yeah 17 months I've had it.

34:57:00 Ms. Roberts: 17? So you're on the verge that it may go away. So I generally tell patients that if it's going to go away, it can take up to 18 months to two years for it to go away because if you think about it, the nerves, especially when they're going into your feet, they've got to start all the way up here in your neck and they've got to repair all the way that signal coming all the way down through your spinal and then down all the way through your leg. And so that can take some time for all of that signal to repair. So there is a good chance that if you're within that two year mark that this is going to be able to go away in which case the only way, and this can be quite frustrating for patients, is we don't know until we try. And so I'll try acupuncture may be a good avenue for you to try as well too and that may help you get off the medications if that's your ultimate goal to try to help with the symptoms.

35:45:00 Audience member: Can neuropathy get worse? Actually, you answered part of my question. So there's really nothing we can do besides drug interaction and maybe acupuncture to correct the neuropathy? And second to that is does it get worse? Mine seems to be getting worse rather than better.

36:05:00 Ms. Roberts: So unfortunately, for some people it gets worse, especially our myeloma patients after having an autologous stem cell transplant. It tends to have this period where it gets worse, it happens between day 30 and day 60 after a transplant. And then after that it does seem to get better. 

The one thing that I tell all patients that you can do to try to help your symptoms is do your physical therapy because, again, if you look at the data behind that, that is one really active thing that you can do that can control the symptoms. It can make the pain better, and if you increase your muscles around the sites, then it's hopefully going to help with the pain sensation too.

36:53:00 Audience member: Do mechanical devices help with peripheral neuropathy? So I've doing the gabapentin, I'm up to the 2700 milligrams a day. I don't think it's doing much. I know it's not doing much. They've talked about maybe putting me on the antidepressant. By looking at me, I definitely don't need any more weight gain, I'm concerned with some of the other side effects. As far as the physical things that you can do, I went to a center that said that they are like neuropathy specialists and they have a nerve scrambler. It's literally a $4,500 treatment with no guarantees on it.

Cancer hasn't been good for my bank account, so if it worked it'd be well worth it and if not, then it's very poor, and I'm having a hard time finding any remotely definitive information saying there's a 50 percent chance, there's a 10 percent chance.

I also saw another machine, it's a vibrating plate machine, [inaudible 00:37:54] it's called Zasz or Zasz, Z-A-S-Z, and that's like a $3000 machine. Once again, if it works it's worth it, but it's a lot of money to throw away if it's a gimmick.

38:07:00 Ms. Roberts: Right. So I hate this for you, I do. So his question is are there any tried and true after kind of gabapentin, mechanically that can help?

38:19:00 Audience member: I'll do anything that would work.

38:22:00 Ms. Roberts: So the downside with peripheral neuropathy is it can be very much affecting your quality of life and patients can have a poorer quality of life when you have bad peripheral neuropathy. And unfortunately the treatments that go along with it, nothing is a sure fit for anybody and nothing's 100 percent.

Most of the studies, looking at some of the mechanical treatments, are showing response rates around 30 percent, but if you're within that 30 percent, I mean this is the hard part when I'm telling patients what to do is because you're not a statistic, you're an individual person. And if you fall into that 30 percent that gets the benefit, then that was the perfect choice for you. But I hate it because the medicine that goes behind cancer treatments is incredibly expensive. Have you tried any of the topical creams yet?

39:15:00 Audience member: I've tried topicals.

39:15:00 Ms. Roberts: The compounded topicals? The ones the multi-agents in it?

39:17:00 Audience member:  I've tried quite a few. My sister in law, she actually just passed away a few weeks ago, but she had the medical marijuana stuff also I tried, some of that stuff helped a bit. But you're saying like the burritos and the pizza cravings, that doesn't benefit me.

I've had enough, but yeah, I have tried some things, I'm not getting a lot of relief and I just really thing, I think I'm in a bad cycle. Like my sleep is also terrible. As they say, pain is worse by a lack of sleep.

39:47:00 Ms. Roberts: That is correct.

39:48:00 Audience member: And the lack of sleep exacerbates the pain and I think I need to drive a spike in the cycle somewhere, and that's why my whole life is kind of screwed up.

39:58:00 Ms. Roberts: So from a standpoint of money, and I'll speak to that part first, probably going to some of the antidepressants is going to be, maybe, a better first option, they're going to be less expensive. They are going to take about two weeks for you to be fully effective. And I don't know all of your medications, but the nice thing about the particular two that I spoke about, they are less interfering with some of the other medications and so they can be quite, quite good in combination. 

The other thing that I'll commonly try is if you're maxing out gabapentin and it's not controlling your symptoms, that's when I'll usually go in and add in the pregabalin, or Lyrica, because they're two different mechanisms of action so to speak between gabapentin and pregabalin and so sometimes using a different drug can help alleviate the symptoms.

40:53:00 Audience Member: Is it a better first step to go gaba and Lyrica or is it better to go to the Cymbalta?

40:57:00 Ms. Roberts: So I personally in my own practice add in the Cymbalta next. If there are other medications or things in your history that puts you at a not a good candidate for Cymbalta then I'll try to taper down off of gabapentin and add in the pregabalin or Lyrica. There are, as with everything, you have to look at what other medications that you're on, what other diagnosis that you have. People who have a lot of heart issues, sometimes the antidepressants are not always friendly with some of the other medications, so you have to be careful with that.

My practice is to add in Cymbalta, I like Cymbalta, I think it's a good drug. I think it's good at controlling the pain symptoms. Because of the way it works, it's a completely different mechanism of action compared to the gabapentin, so together they can work synergistically to help control the symptoms and will be a little bit cheaper on your pocketbook too.

41:57:00 Audience member: Does neuropathy stopping getting worse and does it cause cramping: First of all, this is so timely for me personally. My wife isn't here because we had two and a half hours of hell last night with neuropathy, and cramps, which is a daily thing. It doesn't always happen at night, number one. 

And number two, I'm looking at your list of peripheral neuropathy, obviously she had the AML, she had the chemo, but then during her GVHD hospitalization, her kidneys shut down, so she went on dialysis for two years.  So the point that I'm getting to is that the more items on this list, does that increase the pain? Or is there a threshold where neuropathy stops and does it cause cramps?

42:39:00 Ms. Roberts: Treatment for cramps:   It does, it absolutely does cause cramps. In the chronic graft-versus-host disease setting, the most common presenting symptom before you get the numbness and tingling is going to be cramps. So when I have a patient, and I do the chronic graft-versus-host disease clinic at Emory, so if I have a patient and they're coming in and they're telling me they're having nightly cramps, I'm starting to jump on okay, when's the neuropathy going to start, because that usually is following. Not in everybody, but it is very common with that.

It's hard, this is a hard subject matter, it's a hard thing to treat because you have a conglomerate of symptoms and people can have all of the above. And making it better is very frustrating for you guys as well as to us because we really do want to try and help. And despite adding in all of these different things, sometimes we start tapping out of what we're able to do, especially when you have renal dysfunction because you have to watch the different medications. And that at its baseline is going to cause some neuropathy in patients as well too. But the cramping does go along with it.

Some holistic treatments for cramping could just be old-fashioned tonic water, with or without your gin, would not suggest doing that for a lot of our transplant patients, I'll get myself in trouble. But tonic water with quinine can be a natural homeopathic way to treat some of the cramps. If you have low platelet counts, you should not be using quinine because it can further lower your platelet counts. But it can work for some people, it's pretty benign, it doesn't interfere with a lot of other medications. Some people like the fizzy, bubbly juice too, which is helpful as well.

Other things that have been looked at, but nothing is tried and true, I have a couple patients that are trying turmeric right now. You have to be careful with turmeric, it can interfere with some of your other medications so you have to be careful with your liver with turmeric because people will use it as a liver detox and it can send your liver enzymes sky high. So if you have liver graft-versus-host disease, it's not a good choice for you. 

But there homeopathic medications and stuff that you can try. The downside with those, they're not FDA approved, so the manufacturers of it you don't have control over. So you do have to kind of do your research as to who you're buying them from. Capsaicin is over the counter, it's a homeopathic, I have some patients that say it works, some patients that say it doesn't, so I usually will try that as well too and it's particularly good at relieving that burning sensation that you have on your feet or your hands. I'm sorry, I hate that she's not here.

45:34:00 Audience member: How to you distinguish between symptoms of peripheral neuropathy and scleroderma caused by graft-versus-host disease:  Okay, so I have the chronic graft-versus-host disease led me to diabetes, therein kicked the neuropathy, I also have the scleroderma that you had mentioned. So when my pain hits, which it's constant, it's like it doesn't stop, I don't know what I'm dealing with. I don't know if I have neuropathy issues or I have scleroderma issues. But my mobility is pretty much gone, my flexibility, and I was maxed on the gabapentin, I tried all the topicals, all of that, and really no relief except for when I started getting diabetic shoes.

Somehow that helped me more than the medicines, so I opted to not take the medicine and just go with the shoes. Now I spend money on these shoes and they're ugly, but they're comfortable and they feel great, and when I try to be cute and wear regular shoes I'm going to pay for this for like the next three days.  So everybody look at my shoes. That's my question, how do you tell which one you're dealing with and so you know what to treat?

46:59:00 Ms. Roberts:  That's an excellent question. So how do we know what we're treating, especially when you have that conglomerate of symptoms. 

And so for me, what I go back to is I start going back to my testing, and so I'll really start making you do your squats in clinic.  I'm going to be pricking the bottom of your feed because then it can help me try to figure out is this a range of motion from the scleroderma. 

Do I need to go up on your immunosuppression? Do I need to add back in steroids? Heaven forbid, but we have to do it, it works. 

Versus if it's just not so much your range of motion that's gotten worse and again, I mean if you're in my GVHD clinic, I'm seeing you constantly so I can tell because I've done the same tests. I have people that walk in and they do this with me the minute they see me before I ask questions. They're like, "I'm fine, I'm fine," but if they're all of a sudden, if they're here and then now we're here, then that's their scleroderma that's gotten worse and the pain that's mostly likely associated with the scleroderma. But if they're still here and they're having increased pain, still can be GVHD and that's the hard part with this. But is it more likely to be the neuropathy as a secondary part of that and then looking at the treatments for that.

One of the things that I didn't mention is that I love blue emu. I think for scleroderma, it works quite well and it's a natural, topical cream. It comes as a spray, it comes in a tub, comes as a lotion, and you'll see the commercials and things for it in terms of an eczema type treatment, but I find that it works quite well with my scleroderma patients. And some of them say that it helps with the burning and that tightness feeling, which can also be the symptoms of neuropathy as well. And it's not going to hurt you to try it, and it's available at Walmart and lots of other places and it's relatively inexpensive.

48:51:00 Audience member:  Maximum dosage of B complex vitamins you can take:  You mentioned B complex. What is the minimum dosage or maximum that you recommend?

48:56:00 Ms. Roberts: So the great thing about B vitamins is that you will pee them out, so you really cannot OD on B vitamins. The maximum daily dose for vitamin B12 is about 100 micrograms per day, so that's really the one that we look at. Folic acid should be about 1 milligram per day or folate should be at about 1 milligram per day. So those are the two that I really look at. The other ones, you've got B6 that you can take, which is about 50 to 100 milligrams a day. So what I really tell patients to do is to look on the back of the bottle and see what's in your B complex vitamin, not as much worrying about the dosing for it. So I really want to make sure that you have your B12 in there and you want to make sure you have your folic acid. You want your B1 and your B6 in there too.

49:47:00 Audience member: So I got the microphone at the right time. My PCP told me that my B12 was very high and to go off of it, but I've been on the B12 for neuropathy along with the alpha lipoic. I went off of gabapentin because I was allergic. And when my neurologist told me that all the drugs that are only to mask the pain, they don't do any cures, I just went off all the drugs. I just thought I'll just do supplements.

So should I go off the B12? Or is it going to continue to help my neuropathy battle?

50:23:00 Ms. Roberts: I cannot go against what your PCP just told you to do. So if your PCP is worried about your levels, then you should do what he says and come off of the B12. There are some instances where people can have way too much of some of these levels and there's question of can it cause other problems with it. So if he's seeing extremely high levels, then you need to do what he says and come off of it. For the average person, you can take B complex vitamins and not exceed what your body can handle, but you may be different, I'm sorry. But the alpha lipoic acid, I failed to mention that, so I appreciate you bringing that up as well. That's another supplement that can be beneficial to treating neuropathy and that's something that I'll add back in as well too.

Alpha lipoic acid. It's over-the-counter, it can, do you get yours by prescription? I've not had any success.

Alpha lipoic acid, so Amazon, I will commonly tell patients to use Amazon, and buy Amazon. You have to be very careful with Amazon these days. Do your research with it, make sure that it's coming from a reputable place and not a third-party vendor because you may not actually be getting the right drug, so be cautious with Amazon.

51:50:00 Audience member: Diabetes can contribute to peripheral neuropathy: Hi, I have multiple myeloma and the Velcade brought on the neuropathy early on and I guess on a one-to-ten on pain, it was probably a 20, 25 all the way up my legs. I was on, well gabapentin didn't work at all, but I was on probably two Oxycodones a day. Two Oxycontins and maybe four to five Oxycodones a day, taking CBD creams at night and then a puff of pot just to get to sleep for four or five hours. 

But after I got through my 100 days, I went to a foot doctor, I never could say that word, podiatrist. And he looked at my stuff and put me on the B, the complex of the B 2, 12, 6, and the acid you just talked about. It was in one pill, which was kind of nice, but he also told me, he looked at my stuff, he says, "John, you've got diabetes."

And I said, "No I don't," I said, "I'm prediabetes." He goes, "No, you have 7.3 on A1C, you have diabetes." He says, "Get it down." I got it down and it was like a miracle. It took me about 30 days to get it down to 6.158 and my pain level went from a 25 to about a 3. So I know it doesn't work for everybody, but you check your A1C and if it's high, nothing's going to work for you, nothing.

Was he right?

53:36:00 Ms. Roberts: Yes, no, he was absolutely right. So I mean, sometimes you have to treat other, underlying causes. So the neuropathy, and the reason why you're all here is mostly from either chemotherapy and your transplant, but we do have to look, and I will check hemoglobin A1Cs in my clinic off the bat, especially in like your particular scenario where it's just getting worse and it's not getting better.

You're on so many medications, a lot of people are on steroids. Steroids will cause a steroid-induced hyperglycemia. If you're already genetically predestined to get Type 2 diabetes, we can tip the scales and make you a Type 2 diabetic, so you should absolutely check your hemoglobin A1C. If your level is high, you should be treated for diabetes and that can control the symptoms.

The other thing that I commonly look at is what are the other causes. We are going to hope that your disease never comes back, but all of a sudden, if you've got a new onset neuropathy, and you had a history, if you're a myeloma patient and you have a history of having bone disease, do we have something else that's going on? Do we do need to do MRIs? Scan the back, make sure there's not a tumor or something that's pressing on the nerves that are causing any of the pain symptoms as well. So I mean, very good point. We also, we're so good at trying to treat the symptoms, but we do have to look at the underlying causes as well.


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