My Life With MS

Friday, May 01, 2009

A Look at the Upcoming Multiple Sclerosis Medicines

There are three oral drugs that should come out first for Multiple Sclerosis. While these MS drugs will be a welcome alternative to the injectibles currently available to treat Multiple Sclerosis, we are still a ways away from a cure for MS.

Fingolimod - FTY720
- oral
- in phase III trials
- reduces relapse rate by over 50%
- 2% of patients showed serious adverse side effects including heart and liver problems
- may repair or reduce damage

- oral
- reduces brain lesions and disability progression
- reduces relapse rate by just under 60%
- side effects reducing white blood cells (which increases infection susceptibility) and higher incidence of cancer

- oral, similar in function to 4ap
- improves walking ability
- well-tolerated with few side effects

It is very exciting that so many (over 10) are on the near horizon for treating multiple sclerosis. It is unfortunate that the first three that should be released don't do all that much more than current disease-modifying MS drugs -- other than the fact that they are oral (which is always good).

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Wednesday, March 25, 2009

Alternative to 4-amino pyridine

Amantadine instead of 4-amino pyridine

Recently my doctor suggested I try Amantadine instead of 4ap (which I had been using for 3 years) to battle the fatigue associated with multiple sclerosis. I have a new neurologist who has quite a bit of knowledge of multiple sclerosis - because of this I tried the new drug. Here is what I found:

advantages of 4ap: few negative side effects; gently gives me noticeable energy

disadvantages of 4ap: costs $59 each month

advantages of amantadine: costs $10 per month

disadvantages of amantadine: lots of side effects, made me feel almost caffeine jolted, seemed to stop being effective after just a few hours

Overall, I really disliked everything about the amantadine (other than the price, of course) to help make my multiple sclerosis easier. It was really awful and the side effects really scared me. Of course, I gratefully went back to 4ap and now the MS is manageable!!

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Wednesday, February 11, 2009

Multiple Sclerosis and Colds/Flu

I learned a very interesting tidbit about having multiple sclerosis and getting sick with a bad cold. For the first time in a long time, I consistently had a fever across several days. I didn't even need to check my temperature to know I had a fever -- I just had to survey my multiple sclerosis symptoms.

The higher my fever and the longer I had it, the worse my symptoms were. When my fever was bad continuously, I could barely put my foot in front of the other. I have never experienced this. On my occasions throughout last week, I had to rely on my husband's assistance or a wheeled desk chair to help me to and from the bathroom. It was very scary and very dramatic for me. My MS symptoms went from bad to worse in a blink of an eye.

Of course, now that I don't have a cold or a fever, I am fine. However, now I fully understand why I don't want to be around sick people and why I need to be very apprehensive about being sick because I do have multiple sclerosis.

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Tuesday, January 13, 2009

Chemo and Multiple Sclerosis

I had my first round of chemo for Multiple Sclerosis in lieu of disease-modifying shots (in my case, Rebif). I am very excited about treating my MS with chemotherapy because:

- No more shots three times per week (which means no more feeling awful the next day and my body will have a chance to heal from all of the bruises)
- Chemo is only once every three months
- Chemo provides a greater opportunity to repair prior damage from Multiple Sclerosis

The day I had chemo I was walking on water (partially because I had some steroids at the same time). The next two days were not so great. I only experienced partial nausea so it was bearable. We'll have to see how the next 10 days go. It would be great to not have problems with my white blood cell counts and not lose my hair.

There is no doubt that chemo is a much stronger way to treat my Multiple Sclerosis but I am believing that is just the thing I need to positively impact my disease progression.

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Friday, December 12, 2008

Multiple Sclerosis and the Bioness L300

I am thrilled to know that I am using my L300 more to help with the foot drop caused by multiple sclerosis. It is great to know that I have this "crutch" when I am tired or not feeling up to par. This is so important as you never know how you are going to feel one day to the next with multiple sclerosis.

However, I must share what a friend shared with me last night. She has what is believed to be severe burns on her leg from the sensors of her L300. She got the Bioness almost 7 months ago, and like most with MS, she depends on her L300 leg cuff heavily. The burns just started in the last several weeks.

Of course, minimizing and eliminating the burns is important but what is a huge concern to my friend is Bioness has not presented a solution to this problem and, of course, my friend can not wear the device (which greatly assists her walking challenges with multiple sclerosis) until her skin heals.

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Monday, November 03, 2008

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

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Thursday, September 18, 2008

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.

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