Treatment Options: Infusion Medications


Infusion Medications

The past few weeks we have been discussing the various types of treatments for multiple sclerosis including injectable medications and oral medications. This week we will be discussing infusion medications. There are only four medications in this category, two of which have been approved just recently, Tysabri, Novantrone, Lemtrada and Ocrevus. Let’s take a closer look at each of them.

Tysabri

Tysabri is a monoclonal antibody that is designed to prevent damaging immune cells from entering the bloodstream and crossing the blood brain barrier into the brain and spinal cord. It was approved by the FDA in 2004 for the use in MS. Tysabri is considered an immuno suppressant medication, and should not be used in combination with any other medications that affect the immune system. It is given via infusion once a month at a hospital, local infusion center or doctors office. Usually the infusion itself takes around an hour, then the individual must be observed for an hour afterwards to make sure there are no complications or reactions to the medication. Tysabri is usually considered when other medications have been tried and have not been successful.
There is a very serious, but rare, risk of taking tysabri (and other immno suppressant medications), PML. PML (Progressive multifocal leukoencephalopathy) is a potentially fatal brain infection that can be caused by the JC virus. If you are taking other medications that suppress your immune system, have been taking tysabri for a longer period of time (over two years), or test positive for the JC virus, your risk of getting PML increases. While taking tysabri, you will be monitored every six months via blood test for the JC virus. PML can be tricky to spot, as the symptoms are very similar to symptoms of MS. Clumsiness, vision changes, weakness on one side of the body, personality changes and problems with cognition (thinking, memory and orientation leading to confusion). If you ever experience some of the symptoms and think you may have PML, it is important that you call your doctor immediately.
Other side effects of tysabri can include headache, fatigue, chest/abdominal discomfort, diarrhea, depression, rash and joint pain. Tysabri can also cause liver damage which can be monitored and detected by blood tests. Just another reason to be keeping up with regular appointments and blood work.
Although there are many warnings and potential side effects, many patients have reviewed this medication and called it “liquid gold”. They find it has helped with their symptoms immensely.

Novantrone

Novantrone is an antineoplastic (anti-cancer) medication that is a DNA reactive agent, meaning it causes damage to DNA. It was approved by the FDA in 2000 for the use in MS. Novantrone works by stopping the proliferation of B cells and T cells and macrophages, which all play a role in the immune response that is thought to be involved in MS. It is indicated for people with secondary progressive MS, progressive relapsing MS or worsening relapsing remitting MS. Novantrone is given via infusion that takes 5-15 minutes. Due to potential damage to your heart, you shouldn’t take more than 140mg in your lifetime, this will limit your treatment to 2-3 years.
Before starting to take Novantrone, you’ll have a heart test that will look for a problem called “left ventricular ejection fraction (LVEF)”. If you have a clinically significant reduction or a 50% reduction in LVEF, you should not take Novantrone. Also, if your neutrophill count is below 1500 cells/mm you shouldn’t take it. Novantrone will clear more slowly from your body if your liver function is impaired, as well. Therefore you will need to be tested for proper liver function prior to starting Novantrone.
Common side effects from Novantrone can include nausea, temporary hair thinning, temporary blue-green urine, urinary tract and airway infections, uneven heart rate, weight gain and chest pain/tightness. More serious side effects can include heart disease, liver damage and therapy-related acute leukemia (TRAL).

Lemtrada

Lemtrada is a monoclonal antibody that focuses on CD52 (a protein on the surface of immune cells) and causes depletion of lymphocytes. It was approved by the FDA in 2014 for the use in MS. Originally, it was used and approved at a much higher dose for the treatment of chronic lymphocytic leukemia. It’s ability to target immune cells lead scientist to test its potential as a treatment for MS. Lemtrada is given by infusion for five consecutive days at first, then three consecutive days a year later.
There are serious side effects associated with Lemtrada. A rare bleeding condition, a rare kidney condition, life-threatening infusion reactions, increased risk of cancers and autoimmune thyroid disorders. Yikes!!
More common and less severe side effects include  rash, headache, fever, nasal congestion, nausea, urinary tract infection, fatigue, insomnia, upper respiratory tract infection, herpes viral infection, hives, itching, thyroid gland disorders, fungal infection, pain in joints, extremities and back, diarrhea, sinusitis, sore mouth and throat, tingling, dizziness, abdominal pain, flushing and vomiting.
Prior to starting the medication, an individual should be vaccinated for varicella, their thyroid function should be tested and then monitored every three months, they should receive a full CBC and urinalysis once a month until 48 months after last infusion and they should have a skin exam yearly to monitor for melanoma. 

Ocrevus

 
Ocrevus is the newest medication on the scene. It was approved by the FDA in early 2017 for the use in primary progressive MS, and is the first medication to be approved for primary progressive MS. Ocrevus is a monoclonal antibody that targets CD20 positive B lymphocytes. These lymphocytes contribute to nerve damage in MS. Ocrevus is given via infusion in a infusion center or doctors office. The initial dose is split up over two weeks. In the first infusion 300 mg is infused then two weeks later another 300 mg. Each of these infusions takes at least 2 1/2 hours. After the first two doses, you will get one infusion every six months which will take at least 3 1/2 hours. Prior to your first dose you will need to be screened for hepatitis B.
As with the other medications, there are many potential side effects. Fatigue, coughing, fever, shortness of breath, nausea, headache or all possible. Infusion related reactions may occur as well. These may include throat irritation, headache, flushing, mild fever or rash. During clinical trials several individuals developed abnormal growths of tissue, the links between these growths and the medication are still not known. 
It is clear that these medications are very strong. Many of them include the caveat of “try others first”. When deciding on one of these medications, it is a very individual decision. You can talk to as many people as you want, but in the end, how the medication will affect you comes down to your body and your biology. You’ll never truly know how something will work, or not work, until you try it.
 
I’ve been on tysabri for just over two years. Before starting the medication I read numerous patient reviews. It seemed like one person loved it then the next hated it and this continued for pages and pages. I finally realize that I just needed to try it for myself. When I first started it, after I would have an infusion I would be exhausted, like spend the rest of the day on the couch and do nothing exhausted. As the infusions went on, the exhaustion lessened. Eventually I got to the point where I am now. I can walk into the infusion center get my infusion and then go on with my day, *almost* like nothing happened. 

I’M ALISSA!

I help women who have also been diagnosed with Multiple Sclerosis make specific and personalized diet, lifestyle & subconscious changes so that they can begin to heal their body, reduce disease symptoms, and return to a life they love.hey there,

follow along on Instagram:

Or for when you’re trying to talk yourself out of being sick.. 🙋🏻‍♀️🙋🏻‍♀️😂😂

Even if you feel fine, try saying a few of these out loud. Feel what happens to your body when you do.

Do you feel an expansion or lightness in your chest?
Does breathing get a little easier?
Just notice the shifts in your body.

I’m not saying we can talk ourselves out of it (illness, flares etc) … but… our body and cells respond to our thoughts.

So how we think about ourselves is definitely in the conversation of how we can take care of ourselves overall. 
🧡🧡🧡

Or for when you’re trying to talk yourself out of being sick.. 🙋🏻‍♀️🙋🏻‍♀️😂😂

Even if you feel fine, try saying a few of these out loud. Feel what happens to your body when you do.

Do you feel an expansion or lightness in your chest?
Does breathing get a little easier?
Just notice the shifts in your body.

I’m not saying we can talk ourselves out of it (illness, flares etc) … but… our body and cells respond to our thoughts.

So how we think about ourselves is definitely in the conversation of how we can take care of ourselves overall.
🧡🧡🧡
...

37 4
IDK if it’s hot where you live, but where I live, it’s been hot AF.

And you know what that means, you might be seeing an increase in MS symptoms too. 

I’ve been using all the cooling methods, but I wanted to see if there was more I could do. 

Did you know you can use the food you eat to help cool your body temperature too? 

Food can help you stay cool by helping to regulate your body temperature and promoting hydration and sweating.

Some of the foods that help:
🥒Water rich veggies: like cucumber, tomatoes, zucchini, celery etc
🍓Fruits: like berries, melons and tropical fruits 
🥥Coconut water and coconut milk
🌿Herbs: mint (mint water is 💯), dill, rosemary, lavender, lemongrass, chamomile 
🌶️Spices: paprika, cayenne, peppers etc

If you tolerate them, add these to your next shopping trip and I hope you stay cool!!

PS— I just dropped my new Eating for MS guide!! 
If you: 
👉🏼 are confused about what to eat to help MS symptoms because of all the mixed messages online..
👉🏼 are stuck in paralysis by analysis because of said confusion, which makes you do nothing cause you’re afraid you’ll do it “wrong” anyway.. 
👉🏼 know you want to eat differently, but the thought of “starting a diet” sends you into a spiral.. 

This guide is for you!!

Comment GUIDE below and I’ll send you the link to download!!

IDK if it’s hot where you live, but where I live, it’s been hot AF.

And you know what that means, you might be seeing an increase in MS symptoms too.

I’ve been using all the cooling methods, but I wanted to see if there was more I could do.

Did you know you can use the food you eat to help cool your body temperature too?

Food can help you stay cool by helping to regulate your body temperature and promoting hydration and sweating.

Some of the foods that help:
🥒Water rich veggies: like cucumber, tomatoes, zucchini, celery etc
🍓Fruits: like berries, melons and tropical fruits
🥥Coconut water and coconut milk
🌿Herbs: mint (mint water is 💯), dill, rosemary, lavender, lemongrass, chamomile
🌶️Spices: paprika, cayenne, peppers etc

If you tolerate them, add these to your next shopping trip and I hope you stay cool!!

PS— I just dropped my new Eating for MS guide!!
If you:
👉🏼 are confused about what to eat to help MS symptoms because of all the mixed messages online..
👉🏼 are stuck in paralysis by analysis because of said confusion, which makes you do nothing cause you’re afraid you’ll do it “wrong” anyway..
👉🏼 know you want to eat differently, but the thought of “starting a diet” sends you into a spiral..

This guide is for you!!

Comment GUIDE below and I’ll send you the link to download!!
...

13 3
The soil you grow your tomatoes in matters.
Well, the soil you grow everything matters.

(This is also a metaphor for your mind)

Rich nutrient dense soil = healthy plants 
Soil full of sticks, rocks and a tiny bit of nutrients = unhealthy plants

The foundations on which you build a garden (or a mindset) really matter in the end. 

Which would you choose?

PS- My new Eating for MS guide is here!!
If you’ve ever been confused on what to eat to help MS symptoms, this is for you!!

Comment GUIDE and I’ll send you the link to download!!

The soil you grow your tomatoes in matters.
Well, the soil you grow everything matters.

(This is also a metaphor for your mind)

Rich nutrient dense soil = healthy plants
Soil full of sticks, rocks and a tiny bit of nutrients = unhealthy plants

The foundations on which you build a garden (or a mindset) really matter in the end.

Which would you choose?

PS- My new Eating for MS guide is here!!
If you’ve ever been confused on what to eat to help MS symptoms, this is for you!!

Comment GUIDE and I’ll send you the link to download!!
...

4 0
I shoulda just dunked myself lol.

But save this post to have these tips at the ready.

If you’re an MSer.. you know an increase in temperature can cause our already compromised neurons to work even less effectively than normal.

While we may feel like 💩, there usually isn’t new disease activity causing the symptoms. Rather a worsening of current symptoms, which is also called a pseudoexacerbation.

(Now, if you’re feeling extra 💩💩, and some new symptoms crop up, a call to your doc might be in order.)

There’s a few things I have found helpful for managing the heat:

BE PROACTIVE: Instead of waiting until you’re about to melt, use cooling strategies before you really need them. 
Hopefully this way, you’ll never get to the point where you feel like you may burst into flames.

CREATE AN OASIS: If you don’t have central AC, make (at least) one room in your house a cool oasis where you can hide from the heat.

ACCESSORIZE: Get alllll the cooling products. @koldtec scarves, @releafpack cooling packs (amazing for the back of the neck), an awesome water bottle that keeps water ice cold, personal fans or popsicles!

For me, I can feel ok in the heat until all of a sudden I don’t. Using my proactive cooling has helped a ton.
Also, my heat tolerance has been improving since I have been taking so many steps to improve my health.
I rarely feel tingly in my legs which used to be a warm weather staple for me.

But most of all, make sure to advocate for yourself and your comfort.
You deserve comfort as well as any other person.
Please don’t let fear of “ruining” a summer day keep you from saying what you need.
🧡🧡🧡

I shoulda just dunked myself lol.

But save this post to have these tips at the ready.

If you’re an MSer.. you know an increase in temperature can cause our already compromised neurons to work even less effectively than normal.

While we may feel like 💩, there usually isn’t new disease activity causing the symptoms. Rather a worsening of current symptoms, which is also called a pseudoexacerbation.

(Now, if you’re feeling extra 💩💩, and some new symptoms crop up, a call to your doc might be in order.)

There’s a few things I have found helpful for managing the heat:

BE PROACTIVE: Instead of waiting until you’re about to melt, use cooling strategies before you really need them.
Hopefully this way, you’ll never get to the point where you feel like you may burst into flames.

CREATE AN OASIS: If you don’t have central AC, make (at least) one room in your house a cool oasis where you can hide from the heat.

ACCESSORIZE: Get alllll the cooling products. @koldtec scarves, @releafpack cooling packs (amazing for the back of the neck), an awesome water bottle that keeps water ice cold, personal fans or popsicles!

For me, I can feel ok in the heat until all of a sudden I don’t. Using my proactive cooling has helped a ton.
Also, my heat tolerance has been improving since I have been taking so many steps to improve my health.
I rarely feel tingly in my legs which used to be a warm weather staple for me.

But most of all, make sure to advocate for yourself and your comfort.
You deserve comfort as well as any other person.
Please don’t let fear of “ruining” a summer day keep you from saying what you need.
🧡🧡🧡
...

27 4
Growing your own fruit or veggie is a great way to eat more of them!!

It may seem daunting, but it’s actually pretty easy.

Some easy things to grow if you’re just starting out:

🥬Leafy greens (I’m harvesting my kale here!)
🫛Peas
🍅Tomatoes
🍓Strawberries 
🫑Peppers
🥒Squash & zucchini 
🫘Beans

I’ve grown some type of veggie for years now, usually squash, peas and tomatoes (for Scott lol).

Do you have a garden? That can be in ground, raised or even containers like me.

What do you like to grow?? Tell me below!!

PS- need something to do with the veggies you grow?? 

I just dropped my new Eating for MS Guide, where I talk all about what foods are best for MS and give you some recipe ideas so it’s super simple for you to find symptom relief through food too.

Comment GUIDE below and I’ll send you the link to download!! (And it’s free!!)

Growing your own fruit or veggie is a great way to eat more of them!!

It may seem daunting, but it’s actually pretty easy.

Some easy things to grow if you’re just starting out:

🥬Leafy greens (I’m harvesting my kale here!)
🫛Peas
🍅Tomatoes
🍓Strawberries
🫑Peppers
🥒Squash & zucchini
🫘Beans

I’ve grown some type of veggie for years now, usually squash, peas and tomatoes (for Scott lol).

Do you have a garden? That can be in ground, raised or even containers like me.

What do you like to grow?? Tell me below!!

PS- need something to do with the veggies you grow??

I just dropped my new Eating for MS Guide, where I talk all about what foods are best for MS and give you some recipe ideas so it’s super simple for you to find symptom relief through food too.

Comment GUIDE below and I’ll send you the link to download!! (And it’s free!!)
...

18 6
⭐️Changing my diet!!⭐️

First, like and save this post so you can come back to it if you need.

It took me years to finally be ready to consider changing my diet to help MS symptoms.

It actually took a pretty bad rock bottom moment, but that’s a story for another day.

I get it if you feel like this process is hard and daunting.

Start here:
⭐️YOU DONT HAVE TO CHANGE EVERYTHING AT ONCE
⭐️Pick a meal to switch up, include a few different foods a week or increase protein.
⭐️Get curious about how the foods you’re currently eating are making you feel

Those are just 3 suggestions to get you started.

Want more information about Eating for MS?

Like what (imo) you should include in your diet, how to eliminate foods, and meal ideas??
So that you too can feel so much better in your body and get your life back?

I just dropped a new Eating for MS Guide, full of all the info you need to get started on your own food journey.

Comment GUIDE below and I’ll send you the link! 
🧡🧡🧡

⭐️Changing my diet!!⭐️

First, like and save this post so you can come back to it if you need.

It took me years to finally be ready to consider changing my diet to help MS symptoms.

It actually took a pretty bad rock bottom moment, but that’s a story for another day.

I get it if you feel like this process is hard and daunting.

Start here:
⭐️YOU DONT HAVE TO CHANGE EVERYTHING AT ONCE
⭐️Pick a meal to switch up, include a few different foods a week or increase protein.
⭐️Get curious about how the foods you’re currently eating are making you feel

Those are just 3 suggestions to get you started.

Want more information about Eating for MS?

Like what (imo) you should include in your diet, how to eliminate foods, and meal ideas??
So that you too can feel so much better in your body and get your life back?

I just dropped a new Eating for MS Guide, full of all the info you need to get started on your own food journey.

Comment GUIDE below and I’ll send you the link!
🧡🧡🧡
...

34 25
Or, comment WAITLIST to be notified when it’s ready!!

I’ve been talking to many of you about your questions regarding eating for MS.

There’s lots of confusion about what is “right” and “wrong”. 

Lemme tell you, I’ll answer this in the guide for sure- and it prob won’t be the answer you’re expecting?

Drop any other questions below and I’ll answer them!!

Or, comment WAITLIST to be notified when it’s ready!!

I’ve been talking to many of you about your questions regarding eating for MS.

There’s lots of confusion about what is “right” and “wrong”.

Lemme tell you, I’ll answer this in the guide for sure- and it prob won’t be the answer you’re expecting?

Drop any other questions below and I’ll answer them!!
...

19 7
:: first, comment WAITLIST below to be notified when my new Eating for MS Guide is available!::

When I was first diagnosed with MS I didn’t even think to ask if anything else besides medication would help me.

It didn’t even occur to me that changing my diet or managing stress would also play a part in my disease.

It took a few years, several relapses and failed medications for my BOYFRIEND (now hubby) to ask my neurologist if any diet would help.

And even then, my neuros answer was 🤷🏻‍♂️.

If you also haven’t considered it, let me be the first to tell you:

✨IT’S ABSOLUTELY POSSIBLE✨ 
to decrease your symptoms and influence your long term prognosis by implementing lifestyle changes.

What we eat
How we move
How we manage stress
Our toxin burden
Our hydration status
Etc etc etc
all go a long way in helping us MSers live better with MS.

I lived this transformation; from totally exhausted and unable to get off the couch to hiking mountains or playing golf,
I KNOW it’s possible for you, too.

I’m in the final stages of putting together a comprehensive resource on Eating for MS, comment WAITLIST and I’ll let you know when it’s ready!!

:: first, comment WAITLIST below to be notified when my new Eating for MS Guide is available!::

When I was first diagnosed with MS I didn’t even think to ask if anything else besides medication would help me.

It didn’t even occur to me that changing my diet or managing stress would also play a part in my disease.

It took a few years, several relapses and failed medications for my BOYFRIEND (now hubby) to ask my neurologist if any diet would help.

And even then, my neuros answer was 🤷🏻‍♂️.

If you also haven’t considered it, let me be the first to tell you:

✨IT’S ABSOLUTELY POSSIBLE✨ 
to decrease your symptoms and influence your long term prognosis by implementing lifestyle changes.

What we eat
How we move
How we manage stress
Our toxin burden
Our hydration status
Etc etc etc
all go a long way in helping us MSers live better with MS.

I lived this transformation; from totally exhausted and unable to get off the couch to hiking mountains or playing golf,
I KNOW it’s possible for you, too.

I’m in the final stages of putting together a comprehensive resource on Eating for MS, comment WAITLIST and I’ll let you know when it’s ready!!
...

29 22
I’ve seen this trend with women under 35 and over 35.. so let’s see if we can adapt this for others living with MS!

Those of you who are living with MS for just a few years ask a question and those of us who have been living with it for many years will answer!

Who knows, this may bomb, but the idea is fun!!

Ask away!

I’ve seen this trend with women under 35 and over 35.. so let’s see if we can adapt this for others living with MS!

Those of you who are living with MS for just a few years ask a question and those of us who have been living with it for many years will answer!

Who knows, this may bomb, but the idea is fun!!

Ask away!
...

40 41
Last week I wanted 0 to do with working out. 

I love working out,
I love being able to lift heavy things and feel strong.
But last week?
Nah, I was all set. 

However.. I have some goals and abilities I want to maintain.

Strength training is one way of the consistent ways I help myself to feel good despite living with MS. 

So I made sure that there wasn’t a reason I didn’t want to workout besides my inner toddler, and lo and behold- there wasn’t.
So off I went. 

I gave myself permission to go lighter and slower, which helped me be successful in doing it at all. 

I often find that when I stop strength training for a while, everything starts to hurt, so that’s obviously not what I’m going for. 

I also have a goal of gaining muscle. Muscle decline happens anyway with age, I don’t need to help it along with not moving. 

✨Following through with my daily habits is a form of self care.✨

If you’re done with thinking: 
“I know what to do, I just can’t seem to do it” 
DM me ACTION and we’ll chat

Last week I wanted 0 to do with working out.

I love working out,
I love being able to lift heavy things and feel strong.
But last week?
Nah, I was all set.

However.. I have some goals and abilities I want to maintain.

Strength training is one way of the consistent ways I help myself to feel good despite living with MS.

So I made sure that there wasn’t a reason I didn’t want to workout besides my inner toddler, and lo and behold- there wasn’t.
So off I went.

I gave myself permission to go lighter and slower, which helped me be successful in doing it at all.

I often find that when I stop strength training for a while, everything starts to hurt, so that’s obviously not what I’m going for.

I also have a goal of gaining muscle. Muscle decline happens anyway with age, I don’t need to help it along with not moving.

✨Following through with my daily habits is a form of self care.✨

If you’re done with thinking:
“I know what to do, I just can’t seem to do it”
DM me ACTION and we’ll chat
...

17 4
Instead of being a lump on the couch, now I can go hiking up a mountain with my husband 
Or walk 8 miles around NYC with my sister 
Or do a workout at the gym
Or shower, go shopping and cook dinner all in the same day 

This is possible because: 
✨Yes, the medication I’m on helps for sure 

But truthfully my life has improved so much because of:

✨My daily habits and lifestyle (my morning routine, my diet, my sleep habits, my workouts..)

✨ But what REALLY moved the needle is actively working to have a mindset that allows me to be flexible with myself, to give myself grace when I “mess up” (aka- when I don’t follow through on a habit)

✨This is a mindset that doesn’t require perfection✨

This allows me to be consistent with the habits- like diet changes or movement programs or whatever else I want to do, which then allows me to see progress (aka: my body feeling better)

Which THEN gives me the motivation and desire to keep doing what I’m doing.

✨This is the secret to “success”- right here.✨
Consistent action + giving yourself grace + noticing progress = motivation to keep going. 

It’s not quick or sexy, its actually rather boring.
But boring is actually way better!! 

If you want a life where you:
Feel good in your body, 
Have energy to spend on your friends and family, 
Don’t think about what the MS symptom of the day will be..

I help you create that life for yourself in my signature program, Holistically Healing MS. 

Today is the last day it’s on FLASH SALE… 
Comment MOUNTAIN below and I’ll send you the details!!

Instead of being a lump on the couch, now I can go hiking up a mountain with my husband
Or walk 8 miles around NYC with my sister
Or do a workout at the gym
Or shower, go shopping and cook dinner all in the same day

This is possible because:
✨Yes, the medication I’m on helps for sure

But truthfully my life has improved so much because of:

✨My daily habits and lifestyle (my morning routine, my diet, my sleep habits, my workouts..)

✨ But what REALLY moved the needle is actively working to have a mindset that allows me to be flexible with myself, to give myself grace when I “mess up” (aka- when I don’t follow through on a habit)

✨This is a mindset that doesn’t require perfection✨

This allows me to be consistent with the habits- like diet changes or movement programs or whatever else I want to do, which then allows me to see progress (aka: my body feeling better)

Which THEN gives me the motivation and desire to keep doing what I’m doing.

✨This is the secret to “success”- right here.✨
Consistent action + giving yourself grace + noticing progress = motivation to keep going.

It’s not quick or sexy, its actually rather boring.
But boring is actually way better!!

If you want a life where you:
Feel good in your body,
Have energy to spend on your friends and family,
Don’t think about what the MS symptom of the day will be..

I help you create that life for yourself in my signature program, Holistically Healing MS.

Today is the last day it’s on FLASH SALE…
Comment MOUNTAIN below and I’ll send you the details!!
...

39 2

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