I have a decision to make

A board to discuss the soon-to-be released drug Campath as a treatment for Multiple Sclerosis

I have a decision to make

Postby ShadyPines » Thu Apr 23, 2009 2:36 pm

I am unsure what to do about the Phase 3 Alemtuzumab study. I have been approved for it, but have not yet done the Screening and Baseline visits. They made some changes to it on 3/5/09, and now I would have a 1 - 3 chance of being radomized into the Rebif group, when before it was 1 - 5.

I am almost 50 years old. Yikes, I've never seen that in print, if you will! I was diagnosed in 2001, but know I've had MS much longer than that. If you can believe it, I had a brain MRI in the mid-80's and the neurologist at the time told me I was fine. and that everyone had white lesions on their brain!

My MS neurologist started me on Avonex in 2001 and I took it for seven years. I experienced fatigue, but that was pretty much it. Then I had a bad relapse. She basically ignored my concerns and my fear, as well as saying she didn't need to see me although I was also having eye pain.

At that time I changed doctors and the new one tested me to make sure I had no antibodies to Interferon Beta-1a, then put me on Rebif. There was also evidence of prior bouts of optic neuritis in both eyes.

One year later I had another relapse. Both relapses included numbness in the face and torso, and the first also affected my right leg. After the second I also had difficulty writing letters clearly and had problems speaking without some pronunciation trouble. I also experienced perhaps the weirdest of all symptoms, complete numbness of the back, right side of my head.

Now, four months after the 2nd relapse, all of my physical issues have pretty much resolved themselves. I have more fatigue than before. Sometimes my legs feel weak, as if I can't walk one more step, but currently there is no numbness involved. As for cognitive, I still occasionally forget words or names of things or people, and rarely I mis-speak a word. I had to change doctors yet again a few months ago because all the doctors at my fabulous, new MS clinic decided to depart for calmer waters.

It takes a lot to impress me on the medical front, and I was very
impressed with the new doctor. First she did a full series of blood tests (I found out my vitamin D level was only a 6, which was very low), and she had me go in for a complete brain and 3-part spine MRI (4 hours on the table). The last time I saw her we went over all my test results. I had two lesions on my spinal cord; I hadn't had a MS spinal MRI before, so I don't know if I had any lesions prior to that time. She said that people with MS with spinal lesions are the most likely to become physically disabled by them.

She said that she felt my Rebif was not doing the job it should, and she wanted me to consider my options. She suggested Copaxone, Tysabri or the alemtuzumab study. I have never liked the possible side effects of Tysabri, so I was between the Copaxone and the Alemtuzumab study. My neurologist is in favor of the study, but it turns out she is also the study investigator for our area.

Like Tysabri, it almost seems to me that the alemtuzumab is one of those "last ditch effort" kind of medications. Am I just deluding myself into thinking I'm not that bad? Am I falling apart and can't see this? I find I am doing a poor job of pacing myself, but I often don't feel I have much choice. I am a stay-at-home mom by choice, and then by health issues (mine as well as a sibling's and my very elderly parents).

I was off Avonex for 6 months (they take their sweet time doing tests, having me see different docs and making decisions), and on Rebif for 6 months before I had my 2nd flare. Is it really not doing its job, or is it just showing that the CRAB medications are only 30% effective at reducing flares? I can see myself ramping up for the study, only to be put on Rebif. Strange my doctor doesn't see a problem with that; she told me I could just drop out! Then what?

I'm sorry this is such a long narrrative. I really did try to be as brief as possible. I feel I am just too close to this to make good decisions right now. I have learned so much reading your posts here. I would sincerely welcome any suggestions or advice you might have. :?
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Postby ssmme » Fri Apr 24, 2009 8:19 am

This is understandably one of the most difficult types of decision to make. The statistical chance of getting campath over rebif is still 66.6% to 33.3% but the big unknown has to do with how ms is so unpredictable. If you decide to sign the dotted line you'll find out soon enough if you must stay on rebif for 2 years and then maybe decide not to continue in the study or you could be comforted just knowing you'll be watched over very closely during that two year duration. That way if you end up in a relapse you'll be treated quickly to reduce it's duration. After those 2 years you will be able to do the campath if you so choose and to sweeten the deal, if you get into the rebif arm it'll be paid for by the trial sponsor. If you choose an already approved treatment and take the chance with Tysabri you'll still go at least a year between neurological checkups like mri's and the office visit to assess your physical state.


These are all things to consider and I don't think anyone can tell you what to do. You'll have to decide what path you're willing to take.

Personally I chose CARE MS II because I do not believe the crab drugs are effective enough to warrant their high cost and terrible side affects. I would have suffered through 2 years of rebif (since it would have been given to me at no cost) if that were the arm I had been assigned but luckily I was assigned campath.

So far I feel that my choice in joining this trial was correct for me and I have no regrets.

Please ask your doctor all the questions you want answered and if you have more for us out here just ask.

Good luck choosing which path to take.

Marcia
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Postby freiguy » Mon Apr 27, 2009 6:49 pm

Where do you live?
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