MS Drugs Vs. No MS Drugs: 5 Considerations

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In this video, I'm going to share with you five considerations on whether you might say YES or NO to MS drugs. But before I do I'm Jen DeTracey, I'm the founder of Women Thriving with MS. This is the Women Thriving with MS. YouTube channel, website, Facebook page and group. Be sure to click that subscribe button below hit that bell so that you can be notified of future videos.

Before I talk about saying yes or no to MS Drugs and the Five considerations, I want to state outright, I am not a doctor. I'm a woman that's been living with multiple sclerosis for over 11 years. I have my own experiences because I have been on two, two the disease modifying drugs for MS.

I've listened to many, many women talking about their experience and men too about whether they're on MS drugs and what's most important to know which you probably know already, but just in case you don't is that MS drugs, these disease modifying treatments are for preventing future MS progression. They do not cure MS.

SUMMARY 

Consideration #1 - Cost of MS Medication 

Consideration #2 - Side Effects/Quality of Life 

Consideration #3 - Frequency of Relapses/Progression

Consideration #4 -  MS Symptoms

Consideration #5 - Calm - Life Style 

[Full transcript]

MS Drugs Vs. No MS Drugs - 5 Considerations

In this video, I'm going to share with you five considerations on whether you might say YES or NO to MS drugs. But before I do I'm Jen DeTracey, I'm the founder of Women Thriving with MS. This is the Women Thriving with MS. YouTube channel, website, Facebook page and group. Be sure to click that subscribe button below hit that bell so that you can be notified of future videos.

Before I talk about saying yes or no to MS Drugs and the Five considerations, I want to state outright, I am not a doctor. I'm a woman that's been living with multiple sclerosis for over 11 years. I have my own experiences because I have been on two, two the disease modifying drugs for MS.

I've listened to many, many women talking about their experience and men too about whether they're on MS drugs and what's most important to know which you probably know already, but just in case you don't is that MS drugs, these disease modifying treatments are for preventing future MS progression. They do not cure MS.

There is no cure for MS at this point in time. We're not going to talk about healthy lifestyle and today, we're focused on these five considerations. When I was diagnosed with MS, I was tail spinning. Can you relate? Can you relate to tail spinning? Were you freaking out?

It's like, oh my God, can this be happening to me? In that time when I came back from a business trip, my left lip was drooping. My hand couldn't write. My left foot was dropping. It took medical professionals only 48 hours to diagnose me when I went to the hospital. At that time when I was diagnosed, I felt I felt batshit crazy. Especially because I had been put on three days of steroid drip to reduce the inflamation in my brain.

So for me to make a decision about being on MS drugs, wasn't on my radar. In fact, when I went to my neurologist three months after I had been diagnosed, she did talk to me about disease modifying treatments for MS and told me these drugs prevent progression.

I said to her, you know what, it's too early for me to make a decision on that. I'm not prepared to do that at this point in time. Because number one, I just feel crazy. I didn't think that's a really good time to make a decision. Now, I was lucky because my neurologist didn't push or pressure.

She gave me time, and I really appreciate that. Having that choice, right? We should all have choice around these decisions. The reason why I'm sharing these five considerations with you today is so that you can ensure that you make the best decision for yourself.

Even though I was having really bad vertigo relapses that set me back sometimes up to a couple months at a time, I got to the point where even when I recovered, it was very difficult to read a book. I had blurred vision back then. There were so many things going on. I was in a place in my mind, that MS preventative drugs were not for me.

I'm not there now. I want to state my position as someone who is talking on a channel and representing Women Thriving with MS. I believe I'm in a middle place. I think that MS drugs can be beneficial to people who live with MS, and that it's important to make your own choice. If you are told by someone, if you're on MS drugs, you're not thriving with MS.

That's BS, okay. You need to make the best decision for yourself and make an informative decision. That's why I'll walk you through these five considerations. So that you can make an informative decision or be validated by your decision, whether you're on either side of the yes, no or in the middle like me.

So the first consideration is cost. It's interesting in this area, because cost is about really where you live and your life situation. If you live in Canada and your income is low, the drug company will most likely cover the cost of the medication. Like the USA has states, Canada has provinces. It will also depend on whether the drug has been approved in the province you live in.

The medication has to be approved in the country where you're living in order to get access to whatever that medication is that you choose to go on. If you do choose to go on DMT. In the USA, I'm not sure what happens for those with a lower income. What I've heard is that women are paying $5,000 a month for their medication of which their drug plan might be covering off $1,500.

THese women still paying thousands of dollars every month. So that's a lot, especially when you have a mortgage or you have kids, life has lot of expenses. The cost is going to impact your choices around whether you're going to be even able to go on a medication for MS.

How that's going to impact your lifestyle, versus are you experiencing progression with MS. You're willing give up certain things in order to go on a drug, that's going to prevent MS, a disease modifying drug treatment. Cost for many is a huge deciding factor.

I live with relapse remitting, MS. I've been living with relapse remitting MS for at least 11 plus years. I would consider myself fortunate because I haven't noticed significant progression while living with MS.

I have increased fatigue, which is one of my symptoms. I'll go into symptoms a little bit later. I have had new lesions grow. I'll jump into that as well. Relapse remitting, statistically about 50% of people living with relapse remitting don't progress to progressive or primary progressive. So that's kind of the realm in which I'm speaking.

Let's talk about consideration number two, side effects and quality of life. There can be a lot of possible side effects when taking medication that prevents MS progression. You want to weigh that out. I recommend that you read about all the side effect and do the research.

You can go onto Facebook or Reddit or Google, and look at what patients are saying about medication side effect. It's one thing to read about it from the drug companies. There may be many side effects that won't impact you. You may have other side effect that people living with MS are having that are not published.

So these are important. You can also go to YouTube and also search there and watch videos from doctors talking about it. If you're watching a video, for example, on Aaron Boster, MD is YouTube channel. You can see all the comments that people are writing below when he's talking about a certain drug, a new drug on the marketplace, or the drug that you have been recommended by your neurologist.

Definitely do that research because side effects can really impact the quality of your life. Three and half to four years in, my neurologist who kept asking me if I would consider going on a medication, I finally said, listen, here's the deal. I will go on medication. However, only if there is a new lesion on my brain. Ironically, I got back my MRI, there was a new lesion on my brain and the first one on my upper spine on my neck.

That really freaked me out, honestly. So I agreed to go on Tecfidera. I was lucky in that I did have most of it covered by the drug company because of my lower income and the rest of it was covered through my benefits that I pay into myself. I work part-time. I have my own business. So I was able to cover a small portion like $2,000 of the medication.

Tecfidera would have cost me $5,000 a month if I had to pay out of pocket. It's not that much. So the drug company was willing based on my income to cover the rest. The side effect, the key side effect that came up for me which is a major one with Tecfidera, was flushing.

It's like having a hot flash. I now know what hot flashes are like. I'm still in the throws menopause. But at that point, was pre-menopausal, was at very beginning of this stage. The first time that I swallowed my first capsule of Tecfidera, I turned red as a beet.

I was red from all the way from here, my whole chest, all the way down to my stomach, that flushing just kicked in. It was like, I don't know how to describe it. Just goosh, you know, like, boom. It really was a flash and it was kind of burning and prickly. That was very uncomfortable.

I was told to take the medication with food. So eat first, then take the medication. That seemed to help a little bit. But I could be out and about somewhere and just start having one of these flushing episodes. Well, I was with a client out in public and it was really embarrassing, but I sucked it up and I said, okay, I've got progression showing up through lesions.

I'm going to do this. I'm committed to this. I had to look though at the quality of my life and ask myself, is this impacting my life in ways that is more detrimental than being on the medication? At that point it wasn't so I could suck it up. But then coming into almost the second year, I was starting to have severe stomach discomfort in a way that I hadn't had before. I have a little tender stomach.

But this sensation was noticeably different. I knew something wasn't right. I went to my neurology and said, Hey, this is not really good for me. I was told you can't just drop the medication cold turkey.

My neurologist wanted to put me on something else right away. But because I was moving across the country, she wasn't able to do that. Which means that she wanted me to stay on Tecfidera until I got a neurologist in in Montreal.

She said, well, if you go off the medication, you'll probably have rebound effects. I didn't know what she meant at the time by rebound effects. I didn't even ask. I then went back to my naturopath who I trusted and he was able to muscle test me and check my body system in a way that is non-traditional.

He said, yeah, you're having difficulties with digesting and processing foods. He tested it, muscle tested it related to the Tecfidera. I just made my decision then and there, I was not going to continue on Tecfidera. It had been two years almost.

I did not want to deal with stomach issues while driving across the country. I wasn't driving alone. I had my sweetie with me. We were both driving, but it was a factor to consider. I'll circle back to what happened, happened a little bit later there. One of the things that I do want to share about this idea of being on a medication for two years,

and then having new side effects kick in was not just my experience. Especially when the new side effect is extremely unpleasant. This goes back to quality of life, having a quality of life and making that decision of, you know, are you going to stop the drug or not? I was talking to another woman who was on a different medication.

I think it was Gilenya. It had really helped her to stabilize, less relapses, avoiding progression with MS. For her, she was relapsed remitting, but it was moving toward progression. She was younger than I was. So that's always another factor as well. I asked her,

how long have you been on Gilenya? She told me, it was okay for the first two years. And then I started to notice that my legs were feeling a bit buggered up and I thought, isn't that interesting? This go me thinking, I wonder if after my on a MS medications for more than two years if is it possible that when you're on a medication for a certain period of time,

if it brings new side effects or it doesn't work as well. I don't know what the science is on this. I doubt that that's been studied, but it is something that I'm paying attention to when I'm having conversations with women that live with MS, around medication to see if that is the case.

I know that certain women that are part of the weTHRIVE Membership through Women Thriving with MS, that they have talked about their intravenous medication that they take that you take twice a year. They may feel like crap for a week, but then they feel okay. They make this choice and now it is supporting them in prevent MS progression. That's great, right?

It's not so great for a week and then you're back to kind of status quo of your life, living with MS. You're, whatever your normal is. I went on to Mavenclad, there's a video series documenting my experience on Mavenclad on Women Thriving with MS Youtube channel, you can check it out. If that's something you're considering, I read all of the side effects that were listed.

Then I went to the Mavenclad for MS Facebook group, Mavenclad for MS and I watched and read and listened to different people's experience. Some people who started Mavenclad were hit with bad side effects, right from the get-go. Others had minor side effects and some claimed to have none and were working while they were on the medication. It was across the spectrum.

This research helped me make my decision to go on Mavenclad. When the opportunity came up, it was available in Canada. It was new. I was able to get subsidized for it. So that made it possible for me to take the medication. One of the things that I was told is that you can be hit with fatigue at a certain point in the process.

The medication is such that you take a dosage for a week and then you take a break for a month and then you take another dosage for a week. And what Mavenclad does is it kills the B and T cells that attack MS in the brain. The white blood cells that attack MS in the brain. The hope is that dead cells get replaced with ones that do not attack the brain.

What happens around they say around six weeks where the fatigue can often kick in. It didn't happen to me until about nine weeks. You can be laid out with fatigue. I was. It was bad. It was like moving through molasses. It was intense. I was working at the time. I was working part-time. It was really hard. I lasted at least two and a half months for me.

It really impacted my functioning. I was a hot mess. I was not a happy camper at that time. I live with the fatigue, chronic fatigue from the time I wake up in the morning until the time I go to bed at night. So you can imagine in this case, having an extra layer of fatigue. It was crazy. Right? And that did have an impact on me.

I rationalize with myself, okay, this is all right. This medication is doing what it needs to do. It's killing those cells. I want to see what's going to happen. I was really curious. I thought,
this is my opportunity to try this new drug that's been released in Canada.

As you know, it has to be released in your country for you to have access to it. Your government's bodies have to approve it within the area that you live, whether it's a province or a state.

I had to ask myself, well, would take the second year of the DMT? It deemed as a two year treatment and then it possible to stop or take a break.

I didn't make that decision there and then, but later you'll see that I have a video where I talk about year two. And I say, I not going on it. Well, there's a lot of reasons. Number one, the pandemic was happening. Secondly, well before the pandemic was happening, I was planning on traveling for an extensive period of time.

I did not want to be on Mavenclad with a low immune system and also having massive fatigue while on Mavenclad. Plus I found it very hard to work when I was on Mavenclad during that time of fatigue. I thought, well, if there's no progression in my MRI, after taking the first year of Mavenclad, why would I take a second year?

If I were to see progression happening, I would have taken year two of Mavencald. I would have taken it right away. I wouldn't have been fearful about it. I would have at least known what to expect. Supposedly some people say that you don't feel the same side effects with the second year, but you don't know. This is where we want to look at what is the quality of your life?

How are you operating in the world? Are you able to manage? Number three, which is frequency of relapses and progression. If you are getting new lesions in your brain, on your spine, then you you're having progression. Would you want to stop as quickly as possible? And aim to take a drug and see if it's going to help over a period of the year and treat it as an experiment to see what's possible for you?

Or do you want to leave it to chance? And this is something that I've had to grapple with. Right now, I don't have progression showing up. So I'm not on any MS drug to prevent progression because that's not happening for me. If it were, my decision would be quite different. So you want to look at from the perspective of how often are you having relapses?

How are the relapses impacting your life? What if you were able to have less relapses by being on a drug that's going to prevent progression. Would that be something that you'd want to do? These are the questions you want reflect on. Again, I don't recommend making a decision right away after being diagnosed with MS, because you're dealing with the grief and loss which is very hard.

Now if there's something really serious happening, you may be able to walk agan. You really need to decide right away. All I'm saying is that in the beginning of the diagnosis, there's so much trauma from being diagnosed. It's really hard to make that decision.

Number four is MS related symptoms. You're most likely going to have side effects from taking an MS medication, but there's going to be MS symptoms that you live with day to day. When I first came home from the hospital, after being diagnosed with MS, it felt like I had thread around my toes and it was pulling on my toes.

It was the strangest thing. I had bad, bad headaches. I was taking Tylenol and Advil combined recommended by my neurologist to reduce and elimate the pain. I had huge amount of fatigue. There was a lot going on for me, but those were symptoms. Not related to any medication. I wasn't on any medication. It's so important to track your symptoms and record what they are before you go on medication so you can see what are the symptoms you're having that are everyday symptoms.

And what are going to be the side effects once you start taking one of these disease modifying treatments. It's very important to know the difference between those. Over time for me, I'm having less symptoms. Now it's daily fatigue and sometimes vertigo. The vertigo symptoms I have are not as intense as they used to be.

If I were having other symptoms, then I would record those. This way if you start a MS treatment, you'll know is this the medication or not a current symptom. So be really clear and record what are the MS symptoms that you're having that are intermittent and consistent for you so that when you go on one of these preventative MS drugs, you know, what is not a symptom.

That it's actually a side effect. Very, very important. Lastly, let's talk about lifestyle. In my situation, as I've mentioned, I worked from home. I didn't mention that, but I do work from home. I work part-time. So in my lifestyle I need to be able to work, to support myself financially.

That is a function of my existence. Plus I love the work I do for Women Thriving with MS. It's important to me, to coach women, run the membership weTHRIVE and design online courses. I also have other activities going on in my life to have balance. All of this important to me.

If you are a person who has retired early because of MS or if you had to leave your job because of MS symptoms and/or progression, those are difficult times and difficult decisions to make. Or maybe your working now, you may have make the decision to stop. At this point you might say okay, now I can go on Mavenclad because I'm not working and if I experience fatigue or other side effect, then I can get through it. It will be okay.

I can manage it because I don't have the same pressures on me. If you've got like five kids at home and you're going on Mavenclad, then what's your backup plan? What kind of support do you have around you to help you? If you have huge amount of fatigue. What other MS medications, if you were to start an intravenous MS treatment that is eventually every six months.

You're most likely going to have a week where you're feeling crappy. Who's going to help support you during that one week so that you can recover from that initial flood of medication working through your system to help stabilize you. Or you choice a daily dose so that you can have a less intense more manageable and consistently treatment once you adjust to the new medication is in your system.

Let's recap these five considerations of saying yes, no or maybe to MS drugs. Number one is cost. That's going to impact you depending on what your financial situation, what supports you can get.

Number two is side effects and really being clear about what those are reading about them, researching them and making sure that you're well aware of what they are and how they may impact you. Some may impact you, some may not. You just don't know. You can to look at this as an experiment.

Number three is the frequency of relapses that you're having.

If you're noticing progression, you may want to hop onto a medication and give it a try for a least a year. I recommend a year to see what's happening first MS related symptoms, be sure to track and record your MS symptoms so that when you go on a medication, you can separate what are your every day symptoms and what are side effects.

Lastly, number five is lifestyle.

What is your lifestyle? What is important to you? I've not gone back on Mavenclad again. If I progressed, I would, and I would make that a priority. And I would deal with what the side effects and the impact of the fatigue on my life. I would set my life up that way.

So whether you're yay to MS drugs or nay to MS drugs, make the right decision for yourself based on research, feedback from other people that live in the MS community that share you their experiences. Read the packaging. Do your research. Ask yourself what is most important to you in terms of your lifestyle.

I'm Jen, DeTracey the founder of Women Thriving with MS. Thank you for joining me here today.

I'm so happy that you came and watch this video. If you haven't already subscribe to the Women Thriving with MS Youtube channel do it now. Lastly, check out at the top of this post because I have a gift for you. There is a relaxation guide, three tips. Now, when you're making tough decisions, You feel stressed out. It's important to relax before you make that decision.

So get that guide so you can check out those tips, try them out, see what's going to help you, and that will help release some of that stress. So you'll have more clarity to make the best decision for yourself, and also check out our Facebook group Women Thriving with MS and our Facebook page Women Thriving with MS. I'll see you soon.