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Comment from: 25-34 on Treatment for 1-2 years (Patient) Published: October 11

After using this medication for a year now, I have gone from a wheelchair to a walker and feel stronger and can do alot more.

Comment from: 25-34 on Treatment for 1-2 years (Patient) Published: January 08

It has completely stopped my MS from spreading but I have noticed that I have a flare up 1 month before my treatment. I'm not sure if that is normal or not.

Comment from: SandieL, 55-64 on Treatment for 2-5 years (Patient) Published: January 16

I had a treatment every 3 months for 24 months. A day or 2 before each treatment I underwent a MUG-A scan to check for heart damage. I experienced vomiting and hair loss. BUT...the therapy seems to have halted the progression of my MS. I'm no better, but I'm no worse, and I'm happy for that.

Related Reading: hair loss

Comment from: huggy1965, 35-44 on Treatment for 2-5 years (Patient) Published: May 10

I was treated 2 1/2 yrs ago. I thought it was a wonder drug. Now I have colon cancer, no one in my family has it. Doc. said another patient he has that did the novantrone that now has cancer. Something to think about and get checked 1 a yr. pls lori

Related Reading: colon cancer | novantrone | cancer

Comment from: 45-54 on Treatment for 2-5 years (Patient) Published: April 13

I was on this for two years getting an infusion every three mos. After progressing steadily for five years it halted my symptoms. I was in remission. Oh happy days! Asymptotic for 3 yrs. Then my cholesterol was high and my dr. insisted I take a medication for that. Against my better judgment I did, and lo and behold I started progressing again. Now trouble speaking, cannot stand to pull up my pants, wheelchair 24/7, lots of falls. I asked my Dr. for a booster round of novantrone but she said no. I got the max. I volunteered to be a test case be no go.

Related Reading: cholesterol

Comment from: 25-34 on Treatment for 2-5 years (Patient) Published: February 09

I have relapsing-remitting MS. I had 3 major attacks before starting treatment, including neurological vertigo. Had 8 treatments (2004-2006), and was in total remission from that point on and for about 4 years. Had a minor attack after gallbladder surgery 6 months ago. Still doing great!

Related Reading: vertigo

Comment from: PLParah, 35-44 on Treatment for 1-2 years (Patient) Published: January 28

Been on Novantrone for 1 year. Had some hair thinning after first couple doses not as bad now notice I don't feel as unbalanced can walk longer distances without holding on to someone or something. Overall been a good experience

Related Reading: novantrone

Comment from: 35-44 on Treatment for 1-6 months (Patient) Published: September 25

Symptoms eased after 1st treatment, small relapse about a month before 2nd treatment. I do have one other symptom (some ringing and hearing loss in one ear) that I wasn't aware of before starting treatment. Overall, I'd say remarkable improvements.

Related Reading: hearing loss

Comment from: MS, 45-54 on Treatment for 1-2 years Published: February 18

So Far so good! The person that has had the treatment has handled it ok so far and there was no extra lesions showing on the last MRI. So far has had 6 treatments.

Comment from: 25-34 Published: November 11

my sister just passed away from myocardiopathy which is a "rare and infrequent" side effect associated with taking this drug. please beware. make absolutely certain that you or your loved one with ms is monitored prior to, during and especially following the administration of this drug. visit the fda website and lookup the alerts that have been issued with regards to this toxic medication. with proper monitoring of cardiac function you or your loved one with ms may benefit from use of this medication but please take all necessary steps to ensure that cardiac function is monitored on a regular basis even months and years after completing the regimen. i dont want anyone else to have to go thru what we have and are going thru as a result of the toxicity of this drug and the lack of proper monitoring in the months and years following administration of it. she was 31 years old, my best friend, my "big" little sister and she had received the last dose of novantrone in 2002. she passed away (according to the death certificate, we are still awaiting autopsy results) from myocardiopathy, severe pulmonary hypertension and ms.

Related Reading: pulmonary hypertension

Comment from: 45-54 on Treatment for 1-6 months Published: October 27

This observation may be totally unrelated to the treatment. Since my wife, an MS patient, has started treatments we have noticed a blue/green discoloration, of all things, on the toilet seat. We have two toilets and the "coloring" is in the same spot. The stain appears to be 'permanent' since nothing I have tried seems to remove it. It is as if some sort of 'dye' has seeped through her skin. Medical staff unaware of similar experience. Any thoughts? Thanks

Comment from: 45-54 on Treatment for 1-6 months Published: May 28


Comment from: nonajudy, 55-64 on Treatment for 1-6 months (Patient) Published: October 17

I took 3 doses was doing fine, when I opened a can of cat food & the smell hit me,i never made the bathroom. I( or I should say) my husband called my neuro & told him, he never heard of that reaction & called the company & told them my story.

Comment from: Jayekimberly, 35-44 on Treatment for 6 months - 1 year Published: October 13

My sister has a rare case of MS. Marburg disease. Thgey have given her this drug and it has seemed to help in the past but the last three treatments havent been working like we have hoped. Has anyone ever had this disease and been treated with this drug?

Medical Editor: John P. Cunha, DO, FACOEP

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