Multiple Sclerosis -- Tysabri vs. Novantrone

I am wanting to get off of my Rebif shots -- the disease-modifying drug for MS. Rebif is a great drug but I just dread the shots terribly (who wouldn't?). However, I know that I need to be taking something for my MS. The other challenge that I am experiencing is that I now get pretty bad cold and flu symptoms after my shot. It is as if all of the sudden my shots are not working in harmony with my body.

My neurologist recently suggested I start on Novantrone as he has many patients that are successfully taking this instead of disease-modifying shots for the multiple sclerosis. Meanwhile I have a dear friend who is on Tysabri who swears by this MS drug. So I thought I would do a quick pro and con list for Novantrone vs. Tysabri.

Novantrone Pros:
- you take an IV once every three months
- it suppresses the activity on B cells, T cells and macrophages which lead to attacks on the myelin
- one of the only drugs for worsening relapse-remitting MS as well as more aggressive forms

Novantrone Cons:
- it is a cancer drug and therefore has some of the well known side effects.

Tysabri Pros:
- does not carry the intense/strong side effects of a cancer treatment
- equally great positive impact on current and longer term MS symptons

Tysabri Cons:
- it is a monthly infusion
- you can't take steroids with it
- my current doctor and my previous doctor would not prescribe it

Multiple Sclerosis and Novantrone

I went to a new neurologist recently for my MS. I am currently taking Rebif and I have been for three years to help with the multiple sclerosis. I asked the doctor if I should be doing anything different and what are other people similar to me doing to treat their multiple sclerosis.

He said that he has a lot of patients on Novantrone which is a chemotherapy drug used to treat cancer. The dosage is significantly smaller for multiple sclerosis patients and therefore so are the side effects. It is also the only drug that has been approved by the FDA to treat secondary progressive forms of multiple sclerosis.

I thought it was great that my new doctor suggested I look up info on Novantrone and consult a cancer doctor for their perspective (since these doctors work so much closer with the chemotherapy drugs).

I am not sure what I think yet about this drug but I am eagerly exploring it -- it may be an option for me.

A cooling trick for MS whenever you get overheated...


I live in Texas. This summer we have pretty much had three months of consistently over 95 degree days. This is no good for a person with multiple sclerosis. The hot weather has really stopped me from doing things this year.


But what I am also noticing is that I get overheated throughout the day regardless of whether or not I am in the heat. Again this does not bode well if you have multiple sclerosis. It dramatically reduces my mobility or desire to do things.

I happened on a neat little trick that keeps me shivering so that I am chilly without boosting the air conditioning.


In an effort to be healthy and eliminate some toxins (which are all good things in fighting multiple sclerosis), I started drinking more vegetable fruit juice (I mix 85% vegetable juice with about 15% fruit juice). Of course, this made me feel really good and clear-headed when I drank the mixture. These are pure blessings when you have multiple sclerosis.

But what I also noticed is that I started feeling really cold -- in the middle of summer in Texas. Now, every morning I drink the juice with my fiber and probiotics and the days are so much easier on my body. Apparently this has to do with your body not generating so much heat to digest the food you eat. That is also why I won't be able to juice in the winter -- I'll get too cold.

I hope this helps you stay cool...

Multiple Sclerosis, Shots and Aleve...

I have been experiencing some crazy symptoms recently after taking my multiple sclerosis disease modifying shot Rebif. As if I didn't have enough to deal with by having multiple sclerosis...now I am experiencing the following challenges 3 days of every week following my shot:

- greater head/mind fuzziness the next first half of the day
- more walking struggles
- cold/flu-like symptoms

I go through this three times every week. I was taking Aleve to offset this just prior to taking my shot but Aleve is toxic to your body and with multiple sclerosis my body is already toxic. I stopped taking Aleve and started taking Ginger Root and that has really helped. Ginger root is a natural anti-inflammatory. Hopefully, this will solve the problem on a long-term basis.

Multiple Sclerosis, Coconut Oil and Cooking!!

I have multiple sclerosis and have been reading a lot of books targeting healthy lifestyles for people with chronic diseases like multiple sclerosis. It is very interesting to me how much food plays a role in your general functionality - your daily activities as well as your internal bodily functions and toxicity.

I am equally amazed at home much coconut oil has come up in my reading. I have read several books lately that deal with the impacts of multiple sclerosis on a holistic level and they all discuss coconut oil. It is great to be validated in your thinking -- especially when you believe something like coconut oil is a health elixir yet the general population and the medical community think of it as snake oil!!!

I appreciate a medical professional's opinion when they don't immediately try to solve all problems with a prescription. I really appreciate someone who wants use common things that don't cost much to treat health challenges.

I did something I have been meaning to do for a while. I bought coconut flour to bake with. It is a healthy flour that contains no wheat gluten (often a huge allergen for people with multiple sclerosis) and is high in fiber. I am learning that when you bake and want to substitute regular flour in recipes, you have to combine alternative flours. I bought coconut flour and brown rice flour and I am going to see how it works in chocolate chip cookies, etc.

I'd like to think that changing up what I put in my body will help me in my everyday living with multiple sclerosis!

Multiple Sclerosis and Juice Detoxification

I have been reading a couple of books and visiting a couple of web sites at the urging of my Acupuncturist while she treats my multiple sclerosis. I am learning all kinds of information on the power of juice fasting and how it can help those of us with autoimmune diseases like MS.

Many believe that people with multiple sclerosis can benefit from juicing by:
-- cleaning out the built up toxins in the blood
-- restoring proper function to various organs throughout the body
-- gaining energy and mental clarity (two things that give people with MS trouble)
-- cleaning out the bowel thoroughly
-- improving walking, balance and mobility by ridding the body of toxins

Not only does juicing do all this, but it also helps you lose weight and feel better while potentially minimizing your need for some prescription drugs.

From what I understand, it is best to drink primarily vegetable juice and minimize the sugary fruit juice content. I just did this for a few days and I was shocked at how much it helped me think clearly, feel energized and walk better. I mixed all juice with equal amounts of water and made sure to take something like Smooth Move -- a tea that facilitates bowel elimination everyday.

What I experienced was well worth not eating solid food for a few days. I plan to do this one day a week for quite some time to continue to improve what I experience with my multiple sclerosis.

Multiple Sclerosis Exacerbations

I never know if I am for sure having one of the exacerbations related to my multiple sclerosis or if it is just a few bad days. I can never firmly isolate the situation.

The challenge is if I am having an exacerbation, then I need to take steroids. If I am not, I don't want to take the steroids. However, if you don't knock out an MS exacerbation with steroids, there is potential that whatever is happening temporarily may become permanent. I am constantly challenged with this issue as I don't want the side effects of steroids if I don't need them and I don't want to put any unnecessary medicine in my body.

I am in this situation right now and I am having such a difficult time -- both with my MS and with the decision of whether or not to take the steroids. My doctor has prescribed a pretty intense dose of steroids that would knock anything out but they may also help me gain weight (already a problem). I also continually fear that my body will get used to a medicine and the medicine will eventually become less effective. What to do!

Multiple Sclerosis is a very interesting disease that constantly forces me to think about treatments, daily activities/mobility and everything in between!!!

Multiple Sclerosis and the Bioness L300

I have had MS for many years and have walking/balance problems. My friend Mo got the Bioness L300 several months ago and she believes it has made a big difference in her multiple sclerosis related gait problems. I bit the bullet and got one, too. Granted many insurance companies do not cover this device and it costs $5900. However, it works by stimulating the muscle on the front of your leg below your knee. This stimulation, in turn, forces your toes/forefoot to automatically pop up. This prevents the dropped foot so prevalent in many with multiple sclerosis.

Here are my initial pluses and minuses for the L300 as it relates to me and my experiences with multiple sclerosis:

Pros
- it does help me walk better
- I do not get as fatigued as I don't have to concentrate so hard on walking
- Bioness will work very hard to get this device for you

Cons
- it has a pretty big leg cuff and I think very few of my pants will fit over the L300
- it takes a little time to get used to the stimulation component
- it takes a little practice to get the electrodes in the right place so it is working correctly to pop you foot up
- not a lot of therapists are acclimated with the L300
- it is quite a little drama to get approved by insurance, even if to pay for it partially

Most importantly, the L300 gives us all hope that there is some help for those of us with multiple sclerosis. That is the best pro of all!!