Making Difficult Decisions: DMT

Living with Multiple Sclerosis is a difficult journey to be on already, just from the symptoms, possibilities from exacerbation, and more. A lot of people (outsiders) don’t understand that those are just some of the difficult things we deal with.

However, there are some things that you don’t see a lot of in the graphics on Pinterest, quotes spread around Social Media, etc. And there isn’t a lot of ‘education/awareness’ on what I’m about to discuss either.

So, what am I talking about? I’m talking about making the difficult decision on medicating with a DMT (Disease Modifying Therapy). It’s not like it used to be, where there was 3-4 medications to choose between. Now we have close to a dozen different medications to choose from, varying from shots, infusions and/or oral therapy. These are one of the hard decisions I’m talking about. How are we supposed to know which medication to choose from?

Most of the information out there will really tell you how the medication is administered and how often. One thing that bothers me, is that there isn’t something that patients can actually look up, without having to dig… to see how these medications work, what their relapse reduction rate is, etc.

Now let me just tell you that I have always decided to medicate, rather than not. Because, I did take a ‘medication holiday’ when I was waiting for a new medication (Tecfidera) to be approved, and that turned out to be really bad. Even though it was only for a few months, I had a lot of new lesions come up from that little ‘med vacation/holiday’ that I took.

Now there isn’t just the ‘which medication should I take based off of how it’s administered and how often’ question… but there is also the factor of each medications side-effects that we have to take into account too.

That’s something I think that a lot of people that don’t have MS, don’t understand. That yes, even though we are medicating and trying to slow the progression of our MS, we’re still dealing with our symptoms caused by MS, and then the side effects of medications of the DMT’s as well as the symptom management medication. So as you can see, it’s not as easy as most people think.

So I thought I would share some personal insight on my journey being on DMT’s and how I chose what medication to be on, etc.

I started off on Avonex, which didn’t have an auto-injector when I was on it, like it does now. It is a once-a-week muscular injection that brings on flu-like symptoms. Avonex is considered an ‘interferon’ medication as well. I did very well on Avonex, in regards to handling the medication, flu-like symptom side effects, etc. However, after receiving an MRI, we came to find out that it wasn’t slowing down my MS the way it needed to.

So from there, I went on Tysabri aka natalizumab, which is a monthly IV Infusion. Now when I started on Tysabri, my testing for the JC Virus was negative, so I felt comfortable being on this medication, because there wasn’t really any side effects to it either. However, after 6-months I found out that I was JC Virus positive, which gave me a higher chance of contracting PML.

That was just something that really freaked me out at the time, so I decided to get off of it, and try out Copaxone (glatiramer acetate), a daily shot given subcutaneously (under the skin). I did really well taking Copaxone for a little while, but then after about 6 months, I seemed to have developed injection site reaction. Not just a ‘normal’ reaction, of just skin irritation, but it was a reaction I had that lasted over a week. I so decided to discontinue Copaxone. (By the way, this was before Copaxone was available in the less frequent dosing.)

So, after Copaxone, was when I had my little ‘med vacation’ that I mentioned before. I was waiting on Tecfidera (dimethyl fumarate/BG12) to be approved by the FDA. Once it was finally available, I got on Tecfidera and did very well on it. The side effects that I had only lasted maybe 3 weeks. I really enjoyed the medication, especially since it was an oral medication, because it didn’t give me any lasting/major side effects. However when I had my MRI check-up, it seemed that Tecfidera wasn’t the drug for me, because it didn’t slow my progression at all.

So after a long talk with my neurologist, and my family members, and really going over for the ‘risks & benefits’ for each medication, I decided to get back onto Tysabri. But why? I had already been on it, and I’m JC Virus positive, so why would I get back on Tysabri? Well, as many of you have heard, they have come out with a JC Virus Index Test. By getting your blood drawn, it will also test your certain ‘level’ of the JC Antibody, and that can correlate to your ‘risk level’ of contracting PML. Which, when I had my JC Virus Index Test done, I was below a 1, and that’s a very low chance of contracting PML.

However, we are still monitoring closely for PML. MRIs every 6-months instead of annually, as well as getting the JC Virus Index Testing done… There are a lot of precautions being taken in order to make sure that I do not contract PML. (Now, remember… nothing is 100% guaranteed). However, it’s better to have some sort of idea of the risk, rather than not know completely.

You can read more about Tysabri and it’s side effects by clicking here.

So I’ve been on Tysabri now for a little over a year, and I have had NO new progression. When my JC Virus levels started to rise, we kinda spaced out my infusion times. They were every 4 weeks, like most people do. Then we went to 6-week intervals for two times… and now I’m on every 8 weeks. And it’s still working well. I will for sure keep everyone updated on this as time goes on.

But I just really wanted to point out that for one, not one medication works for ALL patients living with MS. For another, when you are looking at the differences in medications, trying to make a choice. When I do this, I don’t just look at the convenience and administration of it, I also look at the relapse-reduction rate of each medication.

If you want to learn more about each medication, you can ask your Neurologist for some information comparing the medication. MSAA also has a “S.E.A.R.C.H. Program, in regards to DMT’s for Multiple Sclerosis. To find out more, click here. You can also view the MSAA Treatment Chart, as well.

I also found a PDF posted by the National MS Society, along with many other MS organizations a part of the MS Coalition. So if you want to look at this document in full detail, click here. (The chart I’m referring to begins on pg.14) But let me give you a run-down. I’ve also listed below the branded names, not the scientific names that are listed in the chart. (These percentages are based off of an annualized relapse rate vs. Placebo – for a two-year period.)

  • Self Inject
    • Copaxone: (once daily) has a 29% Relapse Reduction Rate
    • Copaxone: (3-times-a-week) 34% Relapse Reduction Rate
    • Rebif: 33.2% Relapse Reduction Rate
    • Avonex: 18% Relapse Reduction Rate
    • Betaseron: 34% Relapse Reduction Rate
    • Plegridy: 36% Relapse Reduction Rate
  • Oral
    • Tecfidera: 49% Relapse Reduction Rate
    • Gilenya: 54% Relapse Reduction Rate (Compared to interferon beta-1a: 48% Relapse Reduction Rate)
    • Aubagio: 31% Relapse Reduction Rate
  • Intravenous (IV)
    • Lemtrada: 55% Relapse Reduction Rate (Compared to Rebif: 49% Relapse Reduction Rate
    • Novantrone (mitoxantrone): 66% Relapse Reduction Rate
    • Tysabri: 68% Relapse Reduction Rate

Alright, that’s enough science talk with me for now. I’ll try to give more insight on this topic of difficult decisions, not just for medication though. So stay tuned for that.

xoxo

Ashley Ringstaff | Follow me on Facebook | Follow me on Twitter | Follow me on Pinterest

**Originally Published on MultipleSclerosis.net**

Stating Informed & Educated

I’ve had many people contact me via Social Media for suggestions on how they can stay up-to-date on the World of MS and be as educated as possible, when it comes to what’s going on with medications, trials, etc.

While there are many different ways for people to stay educated and fully understand what’s going on in the research of Multiple Sclerosis, there are many different ways to do this. While I know it’s hard to fully understand what is actually legitimate and what’s not, I figured I would help share my insight, so that you can make sure that you are receiving the best information you can… insight that isn’t just opinionated, but backed by scientific findings.

I think I have mentioned in the past that I have set up what is called “Google Alerts” for Multiple Sclerosis. This is something that I use, and receive daily updated e-mails about what is published online regarding Multiple Sclerosis. However, one thing to be careful of with this feature, is to make sure that you are reading the articles that are backed by science, and not just by opinionated blogs, that have legit resources backing their information.

Obviously, the informative articles posted here on MultipleSclerosis.net are referenced and give the scientific information where they found their information, but it can still be opinionated.

So if you want to set up a “Google Alert” for Multiple Sclerosis, here is how to do that. If you go to Google Alerts page – and you are logged in for Google you will be able to add words, phrases, etc. to be notified on. For more info, click here.

Now, when it comes to resources that I look up on my own, without using the Google Alerts, there are a few of them that I use. Some of them are the National MS SocietyMultiple Sclerosis News TodayMultiple Sclerosis Association of AmericaMultiple Sclerosis Foundation & Multiple Sclerosis International Foundation, and at times MS Discovery Forum. (You can click on the words of each one and it will link you to the area) As many of you know, I volunteer for MSWorld.org – so we also find news information about Multiple Sclerosis and list them in our News Center, as well as out Weekly E-Newsletter.

Now if you haven’t seen the Research Area on MultipleSclerosis.net, that’s something to look at as well. Gives you a bit more information and understanding to what the scientific information is and what it means.

So, how do we figure out what is legit information and what is not? Well I can tell you that if you are reading something that doesn’t have information coming from a legitimate source, or it seems VERY opinionated, and may have resources/references… but even those references/resources seem sketchy, you are most likely reading something that doesn’t have much, if any, scientific research on the subject.

So what do all of those scientific terms mean that you read about in the MS news releases, press releases, etc.? Well, I’m going to try and give you a run down of this.

Aubagio = teriflunomide

Avonex = interferon beta-1a

Betaseron = interferon beta-1b

Copaxone = glatiramer acetate

Extavia = interferon beta-1b

Gilenya = fingolimod

Lemtrada = alemtuzumab

Novantrone = mitoxantrone

Plegridy = peginterferon beta 1-a

Rebif = interferon beta-1b

Tecfidera = dimethyl fumarate (formerly BG12)

Tysabri = natalizumab

So there are the names of the DMT (Disease Modifying Therapies) for Multiple Sclerosis. You can find more information about these medications, how they are administrated and more, by clicking here.

So when we are also going through educational material, there are some terms, abbreviations, etc. that are hard to really understand what they mean, unless you have learned more about the meanings, etc. over time. Here are some examples:

  • BBB – Blood Brain Barrier: This is how the bacteria, etc. get through to our brain and CNS that causes MS exacerbations. This is also how medications are made… well it keeps the BBB in mind, because in most cases the medications need to get through the BBB in order to work.
  • CNS – Central Nervous System: Brain & Spinal Cord
  • DMT – Disease Modifying Therapy: Medications made to try and help slow the progression that Multiple Sclerosis causes.
    • DMD – Disease Modifying Drugs (same as above)
  • LP – Lumbar Puncture (aka Spinal Tap): This is a procedure where your neurologist or someone similar, administers the Lumbar Puncture in order to retain fluid from your CSF.
    • CSF – Cerebrospinal Fluid
  • PT – Physical Therapy
  • OT – Occupational Therapy
  • RX – Prescription Medication
  • PCP – Primary Care Physician
  • HCP – Health Care Practitioner
  • N. – Optic Neuritis
  • EDSS – Expanded Disability Status Scale
  • QOL – Quality of Life
  • DX – Diagnosis
  • SX – Symptoms
  • JCV (or JC Virus) – John Cunningham Virus: Very common Virus in the U.S. This doesn’t have any impact on you if you are JC Virus Positive, unless you are on a immunosuppressive medication, such as Tysabri.
    • Being JCV positive, like myself, and being on Tysabri, can put you at risk for contracting PML (Progressive Multifocal Leukoencephalopathy). However, they now have a way to view your JCV Level (ELISA) that measures your antibody level, which can then determine your ‘risk’ for PML while being JCV positive, as well as taking Tysabri, or an immunosuppressant in general.

I know that I just gave you a lot to understand, and sadly that’s not all of the terminology that’s out there – but it’s some of the most common used, in my opinion anyways.

I’m going to end this article on that note, but I will most likely do a ‘part two’ for this, in the near future. But all that terminology can cause a bit of a brain pause, where it’s going, “holy crap, what is all of this”… (lol)

Take care everyone – I hope this information has helped you out in some way, to help stay informed, educated, and help in understanding what the medical information actually MEANS!

Ashley Ringstaff | Follow me on Facebook |Follow me on Twitter | Follow me on Pinterest

**Originally Published on MultipleSclerosis.net**

Disability Discrimination

Being someone who has Multiple Sclerosis, but doesn’t “look sick”… I tend to get some commentary from others when I’m out and about, and I need to use my handicapped placard.

I wanted to share with everyone something that happened to me not too long ago. I was at the grocery store, and it was PACKED full. I would have had to walk ½ a mile in 105°F heat, from where the open parking was to get into the store. So that doesn’t include me actually walking around in the store, getting my shopping done… then walking back OUT to my car. Let me just clarify that the heat bothers me in a BIG way.

So instead of parking in the back of the parking lot, I used my handicapped-parking placard, which I really don’t like doing unless I NEED to. So I parked in a handicapped spot, went inside the store to get the things I needed… then came back out to my car. So, I’m putting things into the back of my car, and I’m already leaning on my car for support because the heat and humidity at the time was just THAT bad.

As I’m in the process of putting my groceries into the back of my SUV, I have this lady in full spandex ‘work-out’ clothes… with perfect hair and make-up, everything walk up to me… actually, lets say that she ‘swayed’ her way up to me, and decided to tell me what she thought about me parking in the handicapped parking spot. And by that, I mean… she called me a Lazy… you know what… (Use your imagination).

Now, let me just say that yes, we all know that I have a hard time holding my tongue with comebacks to these small minded people, but I’ve been working on it… to not just go off on everyone all the time. But I was over heated, tired, weak, and just frustrated in general. And she hit my last nerve… pun intended. So I told her she needed to get the stick out of her uptight… yeah. She then proceeded to stomp away from me in a true temper tantrum fashion. While I’m still at the back of my car, trying to not fall over.

Now, this little interaction that lasted maybe a minute, ruined the rest of my day cause I was already having a not so good day to begin with. But this is what brings me to the topic of Disability Discrimination. Because I know that I’m not the only one that has gone through this, and I won’t be the last.

The way I see it is, I’m already defending myself from, well, myself. Why do other people have to add to that? I know that a lot of people are just un-educated, and don’t understand that not all disabilities are visible. This goes to show that there needs to be more awareness to the general public about diseases like MS, that aren’t always visible.

I guess I should assume that everyone out there has the common courtesy of being polite and respectful to others. Because I would NEVER… EVER do anything like that to someone else.

It does irritate me when I see someone parked in a handicapped spot, with the car running, and someone still sitting in the car, waiting for the other to get out of the store, using a handicapped pass. But I don’t know their story, so I’m not going to make it my business.

I also shared a photo the other day on my Facebook Page. It was a car, that had a temporary handicapped placard, was still running… with no one in it. BUT, it was using two parking spots. AND the door was not even 5 feet from where the car was. I walked in, and she is sitting there, signing her kids up for something… and I’m sitting there biting my tongue, because doing what she did is just flat out RUDE. Click here to see the pic.

I just don’t understand why people have to stick their nose where it doesn’t belong I guess. Would I still get ‘discriminated’ against for ‘abusing’ a wheelchair parking spot, if I walked with a cane, walker, etc.? NO ONE should have to ‘prove’ his or her disability to a COMPLETE stranger, if you have a parking placard that was issued to YOU! It wasn’t done just for kicks. It’s not like I WANT to use it… I just NEED to at times. I really try not to use it if I don’t have to. If there is a parking space up close, that isn’t handicapped, I’ll park there instead.

I do understand that there ARE people out there that abuse the system. There ARE people that abuse the parking pass, etc. But it’s not EVERYONE. I don’t sit there and make assumptions… because you know how that saying goes.

If you really think that someone out there is abusing the parking pass, etc. Let the cops handle it if you really feel that the person it was issued to is not using the placard.

The bottom line here is that you don’t have to be a certain age, weight, race, gender, using an assistive device, to be classified as disabled. I can’t say that I would have had this knowledge about ‘invisible disabilities’, had I not been diagnosed with MS. But I was raised with manners and common courtesy, and I would NEVER speak to a complete stranger about their personal health, making my own assumptions. I will defend myself at times, though I try not to allow the ‘small minded’ people out there to bother me, but sometimes I can only handle so much at once.

So if you have ever been discriminated against because of your disability, I’m sorry. But I want you to know that you aren’t alone. It happens WAY too often. We need to educate the public about MS and many other invisible diseases. We didn’t ask for this, and we’re already being punished enough by battling this disease on a daily basis. We don’t need anyone to add to it.

“When you judge another, you do not define them, you define yourself.” 

– Wayne Dyer

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**

Do You Remember?

I wanted to touch base (again) on the whole memory issue with MS, because that has been a really big issue for me lately. (Previous Article: Disability Stereotype)

I’ve come to find that my MS has a ‘selective memory’. Meaning, I don’t forget everything that is said to me, for instance. However, there are ‘blanks’ in some of those memories. I can remember talking to someone, what we discussed, but there are key parts that my brain just seems to erase.

This can be frustrating to people we interact with, on how we can’t remember certain things. I just sit there and I’m like, “Yeah, I know it’s frustrating… try dealing with it!” But I don’t want to let out my frustrations on those I care about.

I’ve come to find that with the hotter months here in Texas, my memory took a huge change for the worse. My husband would ask me something, and not even 2 minutes later, I forgot what he asked me. It’s kind of like, getting up to go to the kitchen to get something, but once you’re in there… you forgot what you came to get.

I know many people, that don’t even have MS, deal with forgetting what they came into the kitchen for… and it’s funny to laugh it off. But do you know how frustrating it is, to go through that feeling every single day, multiple times?

Sometimes, when I forget about something, it’s not that it actually slipped my mind. For example, if I have something coming up, on a certain date or time… I know it’s coming up. I’ve prepared myself to go to the appointment, event, whatever it might be. But then my mind decides to play tricks on me… get caught up and forget the time. I don’t even remember what day or date it is sometimes. Yeah, I know… I can just look at my phone. But by the time I get around to doing that, I probably forgot what I was checking it for in the first place.

Before you say anything, yes… I write things down. I put them in my phone, I do everything I can… but I have to remember to look at these things. Do I set an alert on my phone or computer calendar? Yes I do… but if I’m in the middle of something, I’ll just dismiss it thinking, “Okay, I’ll remember that.” But in the long run… I completely forget.

This is all something that I file under my cognitive issues aka “Cog-Fog”. Do you now how bad it is that I was searching for my cell phone, to leave the house to go somewhere… when I was talking on it? I didn’t voice that I was looking for it out loud… I was just getting SO frustrated because I couldn’t find it. I will be looking for my sunglasses, and they’re on my head. The list can go on and on. Yeah, it’s funny to talk about now… but it was extremely frustrating at the time. Then I just got to feeling pathetic afterwards, that I did something so ridiculous in the first place.

Same thing goes for; “Oh did I take that medicine yet? I can’t remember… “, So what should I do? Yes, I’ve used a ‘pill box’ before… but guess what? I kept forgetting to refill it! Take in to account that I have two young kids, that I don’t want to be able to get into the pillbox… and I seem to be always on the run, it’s easier for me personally, to not use a pillbox. Cause my daytime meds; I need with me when I’m out and about.

Now, let me clarify that I’m not sitting here just whining and complaining about this issue. I’m sitting here writing this out, because I want everyone to know that I’ve been through it too. Sometimes, when I’m sitting here writing even, I’ll think of something that I need to do but I don’t want to leave what I’m writing, because I don’t want to lose my train of thought. Well, guess what… I end up forgetting what I needed to do, while I was writing. But if you look at it a certain way, It’s a ‘lose, lose’ situation… because I either forget what I needed to do, or I forget what I wanted to write about.

When I’ve lost something, I will literally go back and re-trace my steps… I even do this if I forgot about something I thought up, hoping that retracing my steps will jog my memory. This sometimes works, but not all the time. Mainly because I don’t remember the stupid steps I took in the first place.

Doesn’t this sound frustrating? For those people who DO NOT have a chronic illness, they try and ‘relate’ to this subject… by making it seem like it’s not that big of a deal, and it’s not just MS; Talking about it like everyone goes through this. You’re right, everyone DOES go through this. However, do they go through it on such a regular basis? Do they forget really important things?

Let me just do a comparison here. Because before I had cog-fog, before my diagnosis of MS… I had a really good memory at some point; like photographic memory almost. Did it disappear? Did the MRI machine eat it? Does that ‘good memory’ quality now have a big fat white lesion covering it now?

I think one of the biggest lies I tell myself sometimes is, “Oh I can remember that; I don’t need to write it down.” **rolls eyes** I sometimes think I need to have a post it note permanently attached to my hand or something, so that I can write things down that I need to remember that day, and I can’t really miss it on my hand… right? I would hope not.

xoxo

Ashley Ringstaff

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**Originally Published on MultipleSclerosis.net**