This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
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As many of you already know, I have been on Novantrone for a year and a half now. Almost immediately I felt better. It pretty much gave me my life back. Then in July I started to go downhill again. My hope at that time was that it was a fluke that my MS was showing its ugly head. The reality is that it was a hot summer which probably contributed to my symptoms. Add the fact that I was having an adverse reaction to my asthma medication and things were not good. In fact I have not felt really good since that time. I was starting to wonder if maybe I am not responding to the Novantrone anymore. I guess I am curious if there comes a point where our bodies get used to the smurf blood and therefore does not respond as well.

My last treatment was on January 4th. Usually by now I am feeling much better, back to my old self really. This is not the case. I have had severe fatigue to the point that I feel like I can't do much of anything. It has gotten to the point that if I seem to actually have energy and go out to do something (even basic things like grocery shopping) then I am paying for it the next day and sometimes for the next 2-3 days. I have been having other symptoms as well. So, if you have been on Novantrone (Mitoxantrone) please let me know if you had a similar reaction to the medication. Did it eventually fade and not work as well or did your doctor take you off before that happened? I am curious to hear how others have responded.

I spoke with my neuro office and since my last MRI was just before I started the Novantrone they scheduled me for a MRI of my brain and lower back. You see last week I woke up only to not be able to walk very well. I could hardly move. My mid to lower back was in so much pain and it affected my left leg as well. I had a lot of weakness and numbness. I had an x-ray that showed normal, so off to the MRI I went. What a MRI it was too. It took about 2 hours which is longer than I want to spend in a MRI machine, but this one was not too bad. It was a brand new MRI machine for the hospital. It was an open MRI and they provided earphones with any type of music you can think of to listen to. I know these machines are not new, but this is the first time I have been in one. It was kind of cool…much better than being squeezed into a tube only to listen to the loud clicks and other noises from the test. Interestingly enough though it still gave me a headache.

Thursday I got the results back and I am happy to report that although I may not be responding as well as I was previously to the Novantrone it certainly did its job! I still have multiple white matter lesions but for the most part they have decreased in size. There is only one lesion that has some enhancement. This is great news! For the first time since my starting on meds for MS have I responded to something. I did not respond well to any of the ABCR's and from what my Oncologist tells me, Novantrone is not the only chemo drug used to treat MS patients. Granted it is not the standard of care, but it is an option. Also there was a study done in Europe a while back that showed patients who did not previously respond to Copaxone had better success with it after taking Novantrone. I have also been told that because you can have no more than 12 doses of Novantrone, the doctors like to save some for a later date in case you really need it. My hope is that since I have responded to this, maybe it has given my body the jump start needed to better respond to other medications. One can only hope, right?

My back MRI was a different story. It turns out I need to see a back specialist. I have a couple bulging discs, some disc height loss, facet join disorder/arthritis, and a degernerative disorder of the spine which causes the spinal canal to shrink. My PCP has referred me to a back doctor here locally that he says is the best at what he does. I have been assured that he can do a lot to help without needing surgery. That would be good! The last thing I want to do is have surgery. My appointment is on Wednesday. I'll let you know how it goes.

I hope this finds all of you doing well. Take care!


Mima said...

Sorry to hear that you have been having problems with your meds, and to add your back in as well. I was unlucky when the MS was handed out, as I am either Primary Progressive or went to Secondary Progressive very quickly, so no meds at all for me. Sorry not to be able to help with that one.

mdmhvonpa said...

Sometimes, I wonder if the 'cure is worse than the disease'. With MS, no cure ... but the option is horrific!

Jaime said...

I hope I did not give the wrong impression. I have been very successful on the Novantrone. It just seems to have come to the time where I don't respond like I did previously. I am greatful to have had something for the time I have that actually worked. My hope would be that my doctors will find something that I can respond to in the future that will continue me on a better path when it comes to my MS.

Unfortunately there is no cure, and sometimes the meds can be worse for us than help. This is of course one of those things where each person responds different. For me I have not responded to the ABCR's but did great on Novantrone. Someone else may do well on Avonex or Copaxone but not on chemo. I suppose this is the continued dilema in finding the best treatment for all of us.

I hope that you are both doing well. Take care of yourselves!


stephen said...

when the rebif stopped working for me, i skipped over novantrone (some cardiac issues - cardiac problems run in my family) and went right for the big gun, tysabri. i think it's working, but who ever really knows.

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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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