Smoking and MS

Andrea: Welcome to the MS Education Podcast Series. Thank you for joining me. I'm Andrea Salmon, and in each episode, we are going to be joined by an expert to discuss strategies for living well with multiple sclerosis.

Today we're talking about the impact of smoking on multiple sclerosis and I have two guests with me today. Dr. Claudia Mark, who is a Senior Research Fellow in the Disability and Health Unit at the University of Melbourne. And Dr. Sarah White, who's the Director of Quit Victoria.

Welcome, Claudia.

Claudia: Hi, Andrea.

Andrea: And welcome, Sarah.

Sarah: Hi there, And rea.

Andrea: It's fabulous to have you with us. Can you each tell us a little bit about yourselves? And, can I ask, have either of you ever been smokers? Sarah, do you want to start us off?

Sarah: Oh, it's a million dollar question for the Director of Quit, Andrea. So I’ve actually never been a smoker, but I was born and bred in a country town and I would say pretty much every single one of my friends smoked and so I'm very well aware of their journeys over the years.

But the reason I never was, was because my dad's father started smoking during the war and in fact died very young. I don't actually have memories of him, but I remember my parents and their friends talking about how awful it was when he developed lung cancer and how he struggled to breathe. And so, we had a very strong cautionary tale in my family from the very start.

That really kept me away from them when I was a teenager. I'm like, all of my friends, pretty much.

Andrea: Yes. And you, Claudia?

Claudia: So, I was actually a smoker and I started in high school. I grew up in the Netherlands where many people smoked. All of my friends were smokers and I started smoking probably when I was about 15 or 16 years old, unfortunately. And I smoked about a pack a day, I think, until I was midway through university. I attempted to quit quite a few times until I finally succeeded about 15 years ago in 2005.

Andrea: Wow, that's amazing. Yes, good on you. So, tell us, perhaps Sarah, what makes smoking such a tricky habit to break?

Sarah: There's a few different reasons, Andrea.

I think we might talk about nicotine addiction later, but one of the things that's really makes it hard for people to stop smoking is that it has been for a very long time a socially acceptable thing to do. And we had for many generations, the tobacco industry doing everything they can to market to people, and they spent billions of dollars marketing to every single segment of the audience you can think of. They had pink cigarette packets for women, they had small cigarettes for kids. They did everything they possibly could. And as a result, we still have a lot of people who see smoking as a “lifestyle choice.”

I'm doing a little air quotes as I say that, because it really is an addiction. It's not a lifestyle choice, but we still sometimes really have to push on that element so people understand it's not a lifestyle choice, it really is an addiction. And that can be one of the most tricky things, particularly when we're talking about groups of, for example, people living with MS.

How do we start having that conversation around smoking in that context?

Andrea: Absolutely. So, I'm going to throw now to you, Claudia, because you've been doing some research in this area, and I'm interested if you could tell us about that research and what it's telling you about how smoking affects the risk of developing MS.

Claudia: Yes, thanks, Andrea. There is actually quite a bit of research looking at how smoking affects the risk of developing MS, and I've summarised this research recently in a topical review in the journal Multiple Sclerosis Journal. So, several studies have looked at this around the world over time, and the evidence is fairly conclusive that smoking tobacco indeed increases the risk of developing MS, and not just smoking tobacco, but also being exposed to passive smoking or secondary smoke, as they sometimes call it. So that means being around people that smoke, for instance, living in a house with someone who smokes. That also increases the risk of developing MS. So, this is important, I think, to know for children of people with MS, who already may be at a slightly higher risk of developing MS themselves due to that sort of genetic vulnerability.

One study actually showed that children whose parents smoked around them had a high risk of developing MS at a young age and, the longer they were exposed to the secondary smoke, the higher the risk was.

Andrea: So, Claudia, what about once you're diagnosed with MS? Does it still matter at that stage whether you smoke or not once you've been diagnosed?

Claudia: Yes, Andrea, it does. There's quite a bit of evidence to support us, not as much evidence as we've got for the risk of developing MS. But there are still quite a few studies that have looked at this. So, there are several reasons why it still matters. First of all, as we age, all of us really, our brains slowly shrink a little bit as we get older.

Now, smoking has been shown to speed up this process because the smoke causes injury to the brain cells over time. Also, smoking can impact on how effective MS medication is at slowing relapses. So, quite a few listeners might be taking, for instance, Natalizumab or Interferon Beta, especially people who have been diagnosed with relapsing remitting MS, and several studies have looked at this and shown that these medications are actually less effective in people who smoke compared to people who don't smoke. And given these medications are designed to slow down your MS and prevent relapses, we really want to give them the best chance to do their work.

There's also been studies that have followed people with MS over long periods of time. So, they've shown that people who continue to smoke after a diagnosis with MS develop walking difficulties much quicker. Some of these milestones, they reach them eight years quicker than people who don't smoke or people who quit at time of diagnosis.

And also important to know is that for people with relapsing remitting MS who continue to smoke can reach the progressive stage of MS, which is called secondary progressive MS, quicker than those who don't smoke or quit smoking. And we'll probably notice, but smokers generally die younger and this is also the case for people with MS who smoke versus people with MS who don't smoke.

So that's been specifically shown in a study looking at people with MS.

Andrea: It's quite challenging information, isn't it really?

I'm going to ask each of you, perhaps starting with you, Claudia, can you outline the benefits of quitting, specifically for people with MS?

Claudia: Yes, so quitting at any stage of MS, or any age is likely to slow down your MS. It's likely to slow down your relapses, but also how quickly disability develops. It's good for your brain health, as I mentioned earlier, it also lowers the risk for other diseases, so we know that people with MS can sometimes be diagnosed with comorbidities. So, other diagnoses or other chronic illnesses and, for instance, cancer or cardiovascular disease.

So, for those outcomes, it's really important that you quit and the sooner you do it, the better your outcomes are.

Andrea: And Sarah, then, for the general population, which is sort of like the overlaying people with MS, because it still includes people with MS, the benefits?

Sarah: Well, there's lots of benefits actually.

Just some of the very short term ones are improvements in the sense of smell and the sense of taste and often that's something that people really comment on when they first stop smoking is, oh my goodness, I can actually taste my food again. It's really terrific.

The the blood flow through extremities. I remember speaking to a lady once, one of the things she really highlighted was, I used to have really freezing cold fingers, and I don't have freezing cold fingers anymore now that I've stopped smoking. There's obviously longer-term ones and far more important ones, but sometimes it's those little things that people can look towards and look forward to when they stop smoking.

But, as Claudia said, obviously risks of cancer, heart attacks, stroke, they're all reduced, but so too are the risks of things like diabetes, which a lot of people don't know about, and I think also things like recovering from wounds faster, cure infections, those colds and flus that come around, people who smoke are far more likely to get seasonal colds and flu.

So, there's a few different benefits there, your mental health and wellbeing. So even with people with severe mental illness have been shown that once they stop smoking, actually their mental health and wellbeing is much improved. So, I think that's a really powerful benefit for anybody out there who's thinking about quitting right now.

Andrea: Absolutely, but it's a challenge. So, what do we know about what stops people from quitting?

Sarah: There's a couple of things there really. I mean obviously people are quite addicted to nicotine. So, they have a need for the nicotine to lift their mood or to, perhaps, help them relax, or things like that.

But the other, and we all sort of understand nicotine addiction, component of that are all of the behavioural triggers and habits around smoking. There are people who aren't particularly addicted to nicotine, but they absolutely need to be doing something with their hands, for example. Or they're so used to having a cigarette with a cup of coffee in the morning that they're actually lighting up before they even realise they're doing it.

I remember someone telling me once that they smoked in their car and they were trying to quit and one day got in the car, drove down the road and were five minutes down the road before they realised that they actually had a cigarette lit and, in their mouth, and they didn't even realise that they'd done that.

So, we have deeply ingrained behaviours and habits. A lot of people will try cold turkey and that certainly works for a lot of people. But, by and large, people aren't using the best supports to try and help them stop. And that really is a combination of nicotine replacement therapy products or stop smoking medications. You can go to your GP for those.

But also using a service like the Quit line which helps you identify all those triggers and habits around smoking and helps you to break some of those. So, what's really stopping people I think, sometimes is a lack of understanding and then this crazy idea that they have to do it on their own, they have to use willpower and any other way doesn't really count.

Well, actually I keep saying if I've got a headache, I don't have to take a panadol to make it feel that my headache will go away for a while, but it's a lot nicer if I do so I can get on with my life. So, I think it's really about people having a go and using some of the things we know work.

Andrea: Absolutely. And, Claudia, is there anything different for our population of people who are living with MS?

Claudia: Yes, I think that's a really interesting question, Andrea, and I've been looking at the research and found that there's actually very little out there. So, I've been doing some research in this area myself and some of that was funded by MS Research Australia and Quit Victoria, so thanks to Sarah, and also by the University of Melbourne.

So, we've done some interviews and an online survey as well with people with MS who smoke, or people who've recently quit, and many people with MS told us that they did really want to quit and that that many of them had made several attempts to quit. Most of them were actually not aware of the impact of smoking on MS at all which I found quite surprising because there is some information out there, but obviously it's not getting to people. And I think that could definitely help motivate people with MS to quit smoking if they knew how beneficial that was for their symptoms and for their MS.

Sarah: With the general population, it's not until someone has that ‘ah ha’ moment that they really get that motivation and they're motivated to seek help. So, not understanding that interaction between MS and smoking is a really missed opportunity for that ‘ah ha’ moment.

Claudia: Yes, I think so too. In the research, that's called a teachable moment, I think, when people are either diagnosed with a chronic disease or, for people with MS, maybe they're having a relapse. And that can be a real, powerful moment, I think, for doctors or nurses to talk to people about their options for quitting, and what the benefits of those will be for long term health outcomes. So, I agree with you, Sarah. I think it's a real missed opportunity, yes.

So, the other thing that we looked at in our research is that people with MS commonly have symptoms like pain, depression, anxiety, these are symptoms that are really common for people with MS. And I'll give you just one example of how chronic pain might make it more difficult for someone to quit smoking. So, we know that if you have chronic pain, smoking can temporarily make you less sensitive to pain. So, it might seem that your pain actually gets a little bit less after smoking, even though that's only because you're getting a little bit less sensitive to it.

So, in the long term, however, smoking actually increases the risk of chronic pain. So, you can see how someone might be using cigarettes to kind of dull the pain a little bit, whereas in the long term it actually makes it worse. Now, what makes it even harder is when they quit, that pain sensitivity might go up even more.

So when you quit, you might temporarily feel a little bit more pain and that can make some people want to smoke again. So, smoking can then help people feel like they're dealing with the pain when in actual fact, in the long term it's just increasing the risk for chronic pain. And so that's kind of a vicious cycle that you can get.

And you can probably imagine a similar vicious cycle for other common MS symptoms like anxiety or depressive symptoms, where in the short term, it may seem like it's getting a little bit better when you smoke, but it's actually making it worse in the long term. So, I think, especially if you're experiencing some of these symptoms, pain or depression or anxiety, you might need a little bit more help to quit smoking.

Andrea: Absolutely.

Sarah: Claudia, so many people say, “Oh, I smoke because I'm stressed” and, smoking actually helps me manage my stress. In fact, most of the stress is coming from nicotine withdrawal and you have a cigarette, and you basically take away that nicotine withdrawal, but how you experience it is, “Oh, now I feel less stressed.”

You're actually just keeping on feeding that nicotine addiction and it's actually taking away withdrawal, not actually giving you stress relief. So, that's another one I think that came out with the fantastic research that Claudia's done is that stress could be a real driver for people with multiple sclerosis as well.

Andrea: Absolutely. So is nicotine the bad guy when it comes to smoking and addiction?

Sarah: Yes, now look, for most people it is nicotine, it is a very addictive drug. But, as I said before, it's also those behavioural triggers around the ritual of getting out a cigarette lighter, and the ritual of, lighting up, or just being in a situation where you're deeply conditioned to, now I expect to have a cigarette, and so your whole body and brain says, yes, it's just like Pavlov's dogs, “Oh, I'm waiting at the bus stop, I must have a cigarette right now.” And, that's really hard.

Claudia: We found from our research that a lot of people with MS think that nicotine is actually the harmful substance in cigarettes. So when we tell them, you know, smoking is bad for your MS, a lot of people think that's because of the nicotine in the cigarettes.

But while that's obviously the addictive substance and that's what makes you keep wanting to smoke, there's a couple of studies in people with MS that have shown that nicotine itself is not actually what causes the harm, it's actually the other chemicals in the smoke. And this is really important to know because it means that nicotine replacement products, which as Sarah has said before can really help you quit smoking, are actually really safe for people with MS to use.

So, nicotine replacement products like gums or sprays or patches are actually recommended to help you quit. And they are completely safe for people with MS to use, even if you want to use that for a bit of a longer term support to, stay quit. So Sarah's colleague, who is a pharmacologist, has actually looked at the interactions between MS medications and nicotine and found that there are no known interactions.

And also, with the other quitting medication that Sarah can probably tell us a little bit more about, I believe she found no interactions whatsoever with any of the MS medications. So, it's really important for people with MS to understand that nicotine is safe to use to help you support your quitting attempts.

Sarah: Yes, that's right, Claudia. And some people are worried about using things like patches and gum because they're worried they're going to get addicted to the nicotine in those and, that's very, very, very rare because it's such a low level of nicotine. So, using patches and gum, or patches and a spray is fine for people living with multiple sclerosis and so are the common stop smoking medications that you would get from your GP to help you stop smoking. So people really should not hesitate to use those, to what's just a quitting attempt.

Claudia:] Yes, I mean, I've said it before as well, it is really never too late to quit. So at any stage, or any age, it's beneficial for your MS to quit smoking and taking nicotine replacement products, if that helps you quit, then that's absolutely not a problem.

Sarah: Yes, absolutely.

Andrea: Yes, for sure. Now, what about e cigarettes and vaping? Are they a safer form of smoking?

Sarah: Well, it's the problem with e cigarettes is that, on paper they look great, i's a way of getting nicotine to help manage nicotine addiction, possibly less harmful. We do think they're probably less harmful than cigarettes, but the problem is you're still inhaling ultrafine particles and chemicals deep into the lung, often many times a day, and we just haven't had them around long enough to know what the long-term health consequences are.

We're certainly seeing pretty good evidence that there's still a risk around cardiovascular disease with e cigarettes and also respiratory damage. So really, the current advice from the Royal Australian College of General Practitioners is they can be prescribed by your doctor when you really have not succeeded with any other method and, to be used really with a lot of caution because we actually don't even have general basic consumer safety standards on the devices or the liquids that go in the devices. So that's a real concern to me and something that almost keeps me up at night thinking about those.

So, nicotine without a prescription from the doctor is actually illegal, so go and talk to your GP about e cigarettes if you really have tried everything else, and I just don't think most people have.

Andrea: Now we partly covered this before, but does quitting smoking make MS symptoms worse, Claudia?

Claudia: Yes, so I think we may have covered some of this before, but yes, I think people may have short term nicotine withdrawal effects, which may be confused with symptoms. People may also be temporarily more sensitive to pain, for instance, that's that example that I gave before. As far as we know, quitting only has benefits for your MS and for your symptoms in the long term. So, if you are worried about, for instance, your anxiety or your pain, or potentially your mood getting worse if you are quitting, I would highly suggest that you try and find more support to help you deal with those symptoms.

If you're worried that you might be a bit more sensitive or, that you might struggle if you're quitting smoking and have, for instance, anxiety or depression but as far as we know there are only benefits for quitting.

Andrea: Absolutely. So we've touched on some of the ways that people can be supported to quit smoking. Is there something that you would say would be the most effective way Sarah?

Sarah: The most effective way we know is to combine Quit line, your counselling to support those behavioural changes, along with what's what we call combination nicotine replacement therapy. Big long way of saying use a patch on your skin for a low-level bit of nicotine replacement, and then use either gum or spray or lozenge at the same time to manage more immediate cravings for nicotine.

So combining the behavioural along with the nicotine replacement support is, far and away the best way to try and quit. It's really that simple. And if you can't remember any of that, you can actually just call the Quitline. Just the cost of the call to the Quitline or you can text them and ask you to call back. 137 848 and they can tell you everything that we've just said about the best way to try and quit.

Andrea: That's fantastic. And Claudia, do you want to add anything to that from what you've found around the best ways to quit smoking?

Claudia: Other than just to reiterate, I think, that it's really important to get all the support you need. So I would definitely talk to your GP, but I would also really talk to your family and friends about what the benefits of quitting are for your MS.

Because I think once they realise what the benefits are, they will do anything to support you to quit. And I know it can be difficult sometimes to quit if your partner, for instance, is a smoker as well, so it would be really important to tell them about the research and how beneficial it is for your MS if you were not exposed to smoke from others as well. So, I think, just try and get it all the support you can really.

Sarah: Yes, that's an excellent point actually, Claudia. Having friends and family around you to help you quit is really important. We know there's actually kind of a social contagion. If one person in a social group quits, then other people tend to do the same.

So, it's a really great time to get together with your friends, your family, and just try and quit together or at least get them to help support you to stop smoking.

Claudia: You know, I can't imagine that someone wouldn't support you, and wouldn't try to help you quit if they knew how important it was for your MS and, potentially, for your long term health outcomes when it comes to, disability.

The other thing that I think a lot of people in our research mentioned was that they found the phone apps really helpful. So there's quite a few phone apps around where you can download an app and you can put in the date that you quit and how much you usually smoke and it tells you exactly how much money you've saved, what the benefits are for your health, some of them even team you up with a buddy, you know you can chat with other people about, “I'm having a difficult moment, can someone pull me through this.”

I don't know, Sarah, if there's any apps that you would recommend, if you know, because there's so many out there.

Sarah: Yes, there's a lot. Look, I think the best one is My Quit Buddy, which is something produced by the Commonwealth Government. And it's not really a behavioural support, but it's a really great motivational tracker.

So, to your point, Claudia, it will say how much money you've saved and, we really should list that along with the benefits of quitting. The cost now of cigarettes means quitting actually helps you save a heck of a lot of money. So, that can be a really strong motivator too.

Claudia: Yes, I know that some people think that the nicotine replacement therapy, the initial cost of it can be a little bit expensive, but if you look at how much money you'll save in the long term by quitting, hopefully that will make you realise that you're really offsetting those costs quite easily.

Andrea: For sure. Claudia, it's fabulous that you're doing research in this area. Can you tell us about your future plans for your research and, in particular, in relation to people living with MS?

Claudia: Yes, so the research that I briefly mentioned before, where we've done interviews and surveys, has uncovered some really interesting findings in this area. So what we want to do with these findings and to ensure that we're supporting people with MS who want to quit as best we can, Sarah and I are working quite closely together, so with QUIT, and also with MS Australia and MS Research Australia to train, for instance, Quit line staff so that they understand more about MS and what common symptoms are, medications, etc.

What we also would like to do is to train MS nurses and neurologists to provide more advice, so ask people with MS whether they smoke to provide more advice about why it's so beneficial to quit, but also to help them quit. So, refer them back to their GP or to the Quitline, for instance, so that's another thing that we're trying to do.

I guess the other thing is to provide information about the benefits of quitting to people with MS and also their families and carers. And so to do that, we're strengthening the links between all the MS societies and quit services to make sure that this information is getting out there. Finally, I'm working with MS Research Australia as well, who's about to publish some guidelines for people with MS around lifestyle factors more in general, so that'll talk about exercise and diet as well. And we've got a chapter in there about smoking that Sarah has kindly helped us put together with her colleague Rachel Whiffen as well. So those are just a couple of things that we're thinking about in the short term, and hopefully it'll have a big impact.

Andrea: That's fabulous. Thank you so much for doing the work. Sarah, we're currently in the middle of a pandemic, COVID 19.

Sarah: I hadn't noticed Andrea. (Ironic laughter !!)

Andrea: Were you aware? Or maybe it's just me where I am. (More ironic laughter !!)

What's the impact of COVID on people who smoke?

Sarah: Yes, great question. So, it does look like at the moment, what the evidence is telling us is that people who smoke are at not more likely to be infected with coronavirus if they're not handing around cigarettes and cigarette lighters, I hasten to add.

But what does seem to be clear is that once infected by coronavirus, people who smoke do have worse outcomes. So they are more likely to develop COVID 19 and they're more likely to have a severe case of COVID 19. And it's almost certainly because they're taking into that experience, some damage to the lungs, and also some reduced immune activity, so they're more likely to be susceptible to the infection.

So, look, it's another really great motivating moment to stop smoking because this pandemic, obviously, is awful, but every year we have flu and colds and people who smoke are more likely to be infected by those viruses as well. So, it's another great motivator to quit.

Andrea: Thank you. It's been fabulous chatting with you both today. I'm sure we could probably go on, but maybe we need to be drawing this to a close. So, to finish off, I'm going to ask each of you for your best advice for our listeners today. So maybe Sarah, will I start with you?

Sarah: Sure, my best advice is do not buy into the myth that you have to quit alone and that willpower is all it takes. In fact, don't even think that I must be ready before I even start. The best thing you can do is have a go, keep having a go. And it doesn't matter if you don't succeed on the first, or the fifth, or even the tenth time, the best predictor of success is to keep on trying.

So, call the Quitline 13 78 48 You can get some support around identifying and changing triggers and behaviours. Really nice bunch of people who'll talk you through it. Go and talk to your GP about getting some nicotine replacement therapy on prescription. or stop smoking medication and just have a go. You’ve really got so much to gain and nothing to lose by trying to quit.

Andrea: Absolutely. Thank you.

And Claudia, what about you? What's your best advice?

Claudia: Yes. I mean, it's hard to kind of add to what Sarah said and what we've been talking about before, but I guess I would put it into context that quitting smoking and also avoiding passive smoking, it's only one part of having healthy behaviours that will give you the best health outcomes.

And so some of those other healthy behaviours include looking after your mental health, being physically active, enjoying a healthy diet. And, Andrea I know that you've got a range of podcasts online and webinars as well on this topic so I would encourage people to look through those.

And I guess, yes, just finally to repeat it once more, it is really difficult to make changes in habits, so almost everyone needs a little bit of help to change these habits and these behaviours. So please get as much support as you can from your GP, from your family, from your friends, and ask for help and give yourself the best chance.

Andrea: That's fabulous. Thank you both again for your time today. That's been so helpful. Thank you.

Claudia: Thanks, Andrea.

Sarah: Thanks, Andrea.

Andrea: For more information on anything that we have covered today, please get in touch with MS Connect on free call 1 800 042 138 or email [email protected].

And don't forget to find the MS Podcasts on your favourite podcast player, such as Apple, Google Play, Spotify, overcast, or you can access the podcast directly from our website, ms.org.au.