Never tested after Novantrone treatments?

A board to discuss the Multiple Sclerosis modifying drug Novantrone

Never tested after Novantrone treatments?

Postby MsJae » Mon Aug 15, 2011 1:39 pm

I have RRMS and my neuro agreed that Novantrone would benefit me. I went for the initial cardio testing, took 3 treatments (he wanted 6), and sent me on my merry way. That was October, November & December of 2008.

The FDA sent out a notice for prescribing Drs' to test patients after their treatments, as problems could arise years after treatment in July of 2008. Ongoing testing was never mentioned to me.

I am now showing signs of congestive heart disease & now going through the tests I should have been given years ago. I have also had to apply for Disability insurance due to fatigue and other isssues, not sure if they are a result of the signs I am having of CHD, but I will find out soon enough.

If you are considering Novantrone, make sure tests are given before and after.

By the way, Novantrone did not help me, but I tried.
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MsJae
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Postby MsJae » Tue Aug 30, 2011 4:10 pm

I saw my neuro & he said he knew nothing of the tests required after the novantrone treatment, he seemed surprised when I brought up the fact that I found the info on the NMS website.

Anyways.

I went through all of the required tests: echo, holter monitor, ecg, lung function test, blood work, abi and they all were unremarkable. Happy Happy!

I still have problems with circulation(cold feet, purple feet & legs), and I still find it hard to take a full breath, but I am happy to know that my heart is healthy. My gp told me that it is MS that is causing my problems. Interesting.

I was taken off of copaxone and amantadine and although they said amantadine was causing tachycardia, I still have it. Its only been less than 2 weeks since I've been off, but it should resolve itself.

I feel worse being off the meds, but I hate being on them as well. I'll keep with my stretching and exercising & I should feel like new.
:lol:
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