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Subject: Should I start Novantron?


Author:
Norm Mead
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Date Posted: 07:09:25 05/24/04 Mon

My Doctor has suggested Novantron therapy for me. I have had MS for 20 yrs. I was on the original study for Interferon 1a (Chiron) the first Bio-drug for MS 14 yrs. ago. I use Copaxone today. I have not had an attack in 6-7 yrs. My mobility has however gotten worse over the years(Polio affect). I'm not very impressed by any of the posts on this site. If anyone has had a positive result I would be interested. Thanks

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Subject: Novantrone injections


Author:
Joanna
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Date Posted: 16:35:18 06/14/06 Wed

Hi, I have had my first injection of Novantrone a month and a half ago, I also had a attack a week after my first injection. My doctor says we will see improvement after the second injection. Can anyone tell me if you have any general improvement or does the Novantrone only stop the attacks?

Thank you, Joanna

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Subject: Questions about novantrone


Author:
Joie Wightman
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Date Posted: 07:05:33 05/12/06 Fri

I had my first treatment 3 week's ago and doing good however my left foot has been swelling...went to the dr. and had a ultra-sound making sure there was no bloodclot,it was fine does anyone have swelling of the leg or foot because of the novantrone?

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Subject: Bad reaction to Novantron


Author:
Rosemaria Cappiello
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Date Posted: 13:51:48 11/29/08 Sat

This past August, I had my first treatment of Novantron. Initially, it wasn't too bad, but within a week or so after, I got so deadly sick. I went into the hospital with what eventually was diagnosed as gall stones. They took my gall bladder out. My skin started drying out terribly and my neuro told me I'm one of the 3% who can't take Novanron. Now, three months later, my skin is in horrible condition and no one (neuro, dermotologist or GP) knows how to treat it. I've taken so much steroids, I now have osteoporosis. Does anyone know how to proceed with this?

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Subject: Novantrone recommendations


Author:
Marlene
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Date Posted: 08:51:25 07/02/08 Wed

My boyfriend, Scott, is 57 and has had MS for 20 something years.He had been on betaseron for a few years and was getting bad injection site reactions. Last year he was taking LDN but quite because insurance wasn't paying. Now his neurologist wants him to start Novantrone. Help! Does it help? And what are the risks?

Thanks.

Marlene

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Subject: novantrone


Author:
anna (how it is with you?)
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Date Posted: 08:35:26 07/12/08 Sat

Hi,
I'm 26, living with MS from 7 yrs. I had to switch to novantrone from betaseron, 'cause after 2 yrs of taking it betaseron stopped working. I started to have acute relapses and from 2 EDSS, I came to 4!. I am now after my third dose of novantrone (mitoxantrone) and I am not feeling well at all. I'd like to ask you when did you start to feel better. I am still walking, but I walk really badly. After first dose I had a relapse. After second dose I was feeling badly all the time, so my neuro decided to speed up the third dose- I've received it after just 2 month, not three. I am now 5 days after third dose, and I am not feeling better at all. How it is with you. (I had to ask on foreign forum, 'cause in Poland people not really use it, especially young people) Thanks for answering me and sorry for my poor english;).

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Subject: Switch from Beta-Inteferon to Novantron


Author:
Susie
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Date Posted: 06:14:48 09/28/04 Tue

My neurologist suggested to either increase the dose of Rebif (a Beta-Interferon drug), start a with Novatron or participate at a pilotstudy for a new drug. I am thankful for any kind of information, e.g. at what time you started with this drug, whether or not you continued with you original treatment, for how long you took Novatron and what effects you experiencened in particular. I am currently 26, was diagnosed 7 years ago and despite having taken Rebif for the last 4 years my symptoms have occured ever more often, if not to say during the last year one problem occurred after the other. Thus far all of my symptoms have faded again over time or after treatment with Cortison yet my doctor is not satisfied with my current condition, and nor am I.
Thank you very much for any information.
Best, Susie

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Subject: Just starting novantrone


Author:
randall
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Date Posted: 19:19:28 06/02/05 Thu

I am starting Novantrone on June 3, 2005.
I was told I had MS back in 1995. T doctor said Novantrone is the last thing I can use. I can't run anymore, I have a small lip. I have to use a cane. The VA is now going to try Novatrone. How Bad is this drug ???????.

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Subject: Reply to scared


Author:
Joanna
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Date Posted: 16:42:16 11/28/07 Wed

Hi, I was very upset reading your message and felt I should respond. I have tried all the other drugs with no response and have just finished a year on the chemo and have not had attack for the entire time (previously every 3 months) it has been a wonder drug for me. That is the point, for me, I think with this terrible thing you need to find the drug that works for you. Has your Nero talked to you about Tysabri? Please don't lose hope, just do what ever it takes to help yourself.
Joanna

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Subject: about to start novantrone


Author:
debbie (happy, debbie)
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Date Posted: 22:32:04 06/26/07 Tue

i am about to start novantrone after i get the testing completed. i am 35 years old and progrssing quickly, i see no other option. take a chance what do we have to lose.

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Subject: been on Novantrone since April 2006


Author:
Tami
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Date Posted: 19:59:15 10/04/07 Thu

My husband is writing this because I do not see very well. I stared with MS in Nov of 2005 and quckly lost all feeling on the left side of my body, Lost my memory, sight in my right eye and some in my left eye and I started seeing things that were not there and having bouts of dolusions. I was on copaxone for about 4 months with no change. My Nero said it was the worst he had seen and referred me to another Nero more specialized in MS. After the first visit they put me in the hospital where I stayed for a week and then 3 weeks at a rehab center after getting massive amounts of IV steroids. My new nero said Novantrone was the only thing that would help. Now I can see better and I only get bad numbness when it gets close to three months and I have not gotten any more dolusions. I am scared though because I am on my 5th does and there is 12 max not sure how I will cope without it since it sems to be the only thing keeping ms at arms length. I am ususaly feeling better for about 10 weeks after a dose but then I start to slip backwards again. I think this drug is worth the risks the question i what do I do in a year or so when I cna not take it any more. I truly am scared.

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Subject: Novantron treatment


Author:
Patricia
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Date Posted: 07:19:30 07/23/07 Mon

My Dr. has recomend I have Novantron treatments,I would like to hear from those that have had it. What are the side effects (how severe) and what are the benefits.
I am 49 was diagnosed in 1986.

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Subject: hair loss and novantrone


Author:
debbie (happy, debbie)
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Date Posted: 22:25:14 06/26/07 Tue

i am about to start novantrone also. i do not think we're nuts i think what other option do we have

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Subject: hair loss


Author:
debbie (happy, debbie)
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Date Posted: 22:23:52 06/26/07 Tue

i am about to start novantrone also. i do not think we're nuts i think what other option do we have

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Subject: About to start Novantrone


Author:
Lisa
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Date Posted: 19:21:19 03/29/06 Wed

Hi everyone!
A little about myself- I am turning "the big 40" this year and am married with four children. My first symptom was Opticneuritis way back when I was 21; not another one until I was 1 month pregnant with our second child who is now 81/2. At this point I was told to terminate the pregnancy - I obviously didn't listen and was diagnosed with an MRI after Emma was born. I was told to take interferon and tried it for 6 months, then stopped. I didn't want to focus on the MS! My theory is, "nobody knows what their tomorrows are and life must go on", and so it did and still does. I had no other symptoms until 2 years ago - my left leg started to get "lazy" and it still is. I use a walking stick and after seeing a new neurologist (that's a bit of a tounge twister), I have decided to start Novantrone which is still in the trial stage here in Australia. I'm a little scared, however it's something I've been wanting to do for the last 18 months. I do "peer support" for the MS Society here in Melbourne and have been for almost 6 years. I love talking to newly diagnosed patients who are scared of having children or getting married, because they think having children will make their MS worse. If I can make a difference to one person then I am happy. It's about not giving up and living in the truest sense of the word.
Bye for now,
Lisa

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Subject: scared


Author:
bj fenn
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Date Posted: 00:20:54 05/12/07 Sat

I was to start treatment soon,but after reading your experiences with it,I think I want to wait since I was told that you can only do it once in your lifetime

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  • Re: scared -- Joanna (A positive note), 17:52:22 05/17/07 Thu
Subject: Frequency


Author:
Lynda Wilkie
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Date Posted: 09:17:31 04/01/06 Sat

I've had my first dose of Novantrone and have seen some improvement. The recommended frequency of infusions is 12 weeks. On the other hand there is a maximum lifetime amount that you can take. Can you increase the time between infusions if you are doing well? I'm going to be staying in Canada for six weeks and wonder if this is too long between infusions?

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Subject: mitoxanotrone (uk name)


Author:
ja kaye
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Date Posted: 13:32:55 11/28/06 Tue

hey! have now done 4 doese of mitox and i'm walking! riding! and basically feel loads better. am aware that i still have ms but am happy ( if more nauseaus than usual. Also finding that the occassional puff of weed helps with that!

jak

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Subject: novanotrone (sp?)


Author:
jakaye
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Date Posted: 11:24:31 08/09/06 Wed

hey there!

i've started mixanotrone(uk for same drug). i've began with three once monthly doses and am now on a three month break. The idea is, i'm told , that i can only have 8 doses in total in my life time. So i'll be done in oct 2007!!!

I'm an amateur dressage rider and fully intend to get back on over the next three months.

I have found the last three doses tough. Nausea and no energy but as the month progresses it gets better.

I'm hopeful for my balance, general mobility etc. I'll keep you informed.

jak

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Subject: hair loss and novantrone


Author:
marilyn
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Date Posted: 11:22:05 09/15/04 Wed

I can't really say if my hair loss will get better after the
treatments are completed since my hair is on the thin side anyway. Of course the novantrone treatments made it a bit more noticeable. I take my eighth treatment (and last one I believe) next Monday. I guess overall the novantrone has helped. I sure hope so.

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Subject: Need info about Novantrone


Author:
Darelene
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Date Posted: 10:33:56 11/10/05 Thu

I was diagnosed with MS in 2000. I take Rebif but am continuing to get worse. I was walking with a cane, but now have to use a walker. My doctor wants to try Novantrone, but I am very reluctant. Please let us hear from you if you have taken this for any time and it has helped. I am even more reluctant after hearing the problems with vein swelling, etc.

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Subject: novantrone


Author:
donna
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Date Posted: 10:47:03 08/28/05 Sun

I'm 73 years old and in year 12 of my MS diagnosis--Primary Progressive.
I has been on Copaxone for 3 years, but discontinued 2 years ago--wasn't doing anything.
My Dr. has recommended Novantrone.
Anyone out there recommend it? Or, am I better off simply sticking to physical therapy.

Donna

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Subject: Navantrone


Author:
pj
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Date Posted: 07:54:13 07/17/05 Sun

Well, no clear answers yet...I start on Navantrone on Wednesday and my goal is to keep our friends posted on navantrone..and I hope it works...So far the most improvement I have seen is from physical therapy ,the only time I use the wheel chair is a seat while I am online.f your not taking physical therapy Dr. Pardo insisted I should do it
before starting Navantrone.Good Luck and keep us posted
please.


Pj

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Subject: WELCOME


Author:
Veronica
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Date Posted: 08:40:45 12/05/03 Fri

I'm often asked if anyone has been on or currently on Novantrone and what their experience has been. This has prompted me to put up this forum specificaly for those on Novantrone or thinking of going on it. If anyone is wishing to ask questions or post a personal experience please do so on this forum. I hope this helps others choose wisely if this form of treatment is for them or not.
Thank you,
Veronica Davidson

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Subject: Novantrone, 2 years


Author:
Reesa Marchetti
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Date Posted: 07:00:36 02/14/04 Sat

Hi,

My experience with Novantrone is probably different, as with most MS symptoms, but here goes.

I have been on Novantrone for 2 years, but I've been approved to continue because in the second year, the dose was cut in half. This was done after the administering doctor consulted with my neurologist. With the doses cut in half, my lifetime "allowance" is doubled. I also take a Copaxone shot daily.

At first, I actually felt an improvement after each Novantrone treatment. I was walking better and had more energy. But it was only temporary. By the third treatment, I felt no better and realized I was experiencing a very slow progression of my original symptoms (mainly a foot dragging).

But I continued with Novantrone because it did have one clear benefit: the length of time between attacks increased. Prior to Novantrone, when I was on Copaxone alone, I had an attack within two years. Since starting Novantrone, I have been attack-free for three years.

This is the longest I have been attack free since I was first diagnosed with MS, about 7 years ago.

One clear drawback to the Novantrone is that whichever vein I receive the infusion in becomes irritated to the point of what my primary doctor calls vasculitis. It itches like crazy for about two months after the treatment. One vein (treated over three months ago) has darkened and become hard to the touch. I'm still waiting for it to return to normal.

When I researched the side effects, I found that this is a rare, but known effect. The treating physician diluted the Novantrone solution the last time I received it (two weeks ago), but the vein is itching. Hopefully, it will not become hard like the other one.

I would like to know more about counteracting this side effect. Are there any other medications that can be added to the solution to protect the vein? I know they include a mild steroid to prevent nausea. Could this be changed or increased?

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Subject: Novantrone injection problem


Author:
Elizabeth Sauer
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Date Posted: 09:17:56 11/23/04 Tue

Hi, my name is Elizabeth. I was diagnosed with ms approximately 14 years ago. I received my last dosage of Novantrone over six weeks ago. When the nurse put the IV in, she missed the vein and injected the chemo directly into my arm. It swelled to approximately three times the size and turned black and blue with excrutiating pain. It is over six weeks now and there is still a lt of pain, itching and black and blue. The swelling has gone down a great deal.
This was an unfortunate incident that happened due to the nurses' lack of competence. I told her when I was first injected that it wasn't right, I felt a tingling down my arm to my fingers. The said it would be fine. Over the past 14 years I have had many IV's and have never experienced this.
For everyone taking this drug, please make sure that the doctor or nurse listens to you if something "doesn't feel right". You need to make sure that you are heard and not ignored!
Prior to this last dosage, I have not had any setbacks. If given properaly, this medicine seems to work extremely well. Lets just hope and pray for a cure some day.
thank you for listening, and best of luck to everyone

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Subject: novantrone questions


Author:
stan
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Date Posted: 16:17:01 10/29/04 Fri

I am 54yo male, living in Boston, MA, with MS since age 40. I will start Novantrone soon, and wonder what to expect. I have read about all the potential side effects, which really bother me, because I am generally healthy, and take no nedications. Please tell me your experience, and where I might find other support groups.

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Subject: About to start Novantron


Author:
Conrad
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Date Posted: 23:08:40 07/11/04 Sun

I am scheduled to start Novantron on August 17 2004. I am currently on interferon(Betaseron). I was diagnosed 6 years ago and my mobility is getting worse. Up until 7 months ago, I was walking just fine without a cane but now I consider my cane a good friend. I am hoping that the Novantron therapy would make my mobility better. I am very interested to hear from people about their experience about this drug.

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Subject: need help on what to expect with novantrone


Author:
PHYLLIS HORTON
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Date Posted: 10:25:03 03/22/04 Mon

my son has had two treatments and i have not really seen an improvement. his mouth looks to have sores, his big toes got an infection and he doen't walk. the right big toe healed but the left one has not. he has a doctor appointment today because this has been almost three months. i need to know if this treatment will eventually get in his system and help him to walk again. someone help me understand.

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Subject: hair loss and novantron


Author:
Mamie
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Date Posted: 18:01:05 01/11/04 Sun

I've just started Novantrone after a major relapse with my MS (Dec. 2003) and have begun losing hair. Does anyone have any idea how long this will last (will it stop during the time between treatments or will it continue for the duration.

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