Novantrone or Tysabri?

[New2Him2]

I have to make a decision soon. I am having my next MRI on next Tuesday the 8th. My neuro who I am not that confident in has been trying to get me to start taking Tysabri.

I know that some people have had good outcomes on Tysabri, but I have taken 3 or 4 doses of Novantrone already back in approximately 2003-2004. I began to feel much stronger and much better, that is all that I can remember right now.

I know they both have serious side effects and risks, but I feel a little more comfortable taking the Novantrone because I have already taken that. My husband thinks that I should try the Tysabri because after doing the Novantrone my veins have gotten much smaller and are hard to find. (I have had surgeries and have had to take blood tests and they always have problems finding my veins, even with a butterfly needle.

can anyone give me some insight into these 2 drugs and what you know about them. I have read the information on both again, but my memory is pitiful and like serious swiss cheese.

I am NOT asking anyone to make the decision for me. I just want to get as much feedback as possible. I have already tried the shots to no avail. I do want to ask which of the 2 drugs should I save for my last resort until something else out? And, why do you pick that one for me to save for last.

I really appreciate any information that anyone can give me in regards to this situation.

New2Him2

[mmcc53]

First, go find a neuro you have confidence in. Also look at the stickies at the top of this page for info on both drugs and ask the doc for the information on both drugs. For instance, they both have consent forms you have to sign which lay out the risks.

I took the full lifetime dose of Novantrone and have been taking Tysabri for about 1 1/2 years.

I would suggest the Tysabri first.

The Novantrone was a terrific drug for me and I had more improvement on it -- but there is a lifetime limit of about 12 doses, and it carries a significant risk of congestive heart failure. Also, for those who take it about 1/3 halt their progression, 1/3 improve and 1/3 it doesn't work for. There is also a risk of leukemia.

I am surprised that you took 3 or 4 doses of Novantrone and stopped. That's about when it really kicks in for most people - after 3 doses. Why did you stop? I can't imagine stopping a successful drug unless their was a reason. It also means you only have 8 or 9 doses left. Were your heart tests normal?

With Novantrone you are suseptible to infection for 3 weeks after each dose and generally have about a week of feeling fatigued.

With Tysabri, there has not been a single death or reported case of PML in people who were not already immune supressed. There are strict guidelines for how long you stop taking your current MS med before starting Tysabri.

The side effects - you feel a little sleepy the day of the infusion and in some people scars and raised moles disappear. That's it.

However, the risks of Novantrone are known from years of experience. The LONG TERM risks of Tysabri are unknown as no one has taking it continuously for more than about 2 years. The original research subjects who kept taking it when it went back on the market have taken it for almost 4 years now, but not continuously.

However by the time you reach the 2 year mark, there wlll be a lot of experience and results from people taking it for almost 4 years continuously and 6 years with a break -- one advantage of not being among the first to take it.

The success rate for Tysabri so far is twice that of the other MS drugs.

You also feel results much faster than with Novantrone. For me it was the 3rd dose of Novantrone when the improvements really kicked in hard - 6 months after starting. With Tysabri I saw results, although not nearly as dramatic, in a matter of weeks.

[bluesky63]

I am also going to strongly suggest that you find a neuro you feel comfortable with. These are major decisions, and your neuro needs to be your partner. Do you have choices where you are? If you don't, is there someone else in the office you can get close to -- the nurse, for instance?

I would also like to add that most people see their options as Novantrone or Tysabri, but IVIg is also a great choice for many people who are having aggressive disease. It's not for everyone, but it can do wonders for the right people. Some of us on the forum had significant improvement from using IVIg.

[Pegakafarmgirl]

I agree,, this is a big step, you need to feel comfortable with your doctor,,

I am doing Tysabri,, { Monday I go in}, side effects are different for so many people,, as mmc pointed out, there has been no cases of deaths,,its a matter of choice,, we had a few people in Iowa that stopped Tysabri, either medicard didn't pay anymore, or allergic reactions,,but you know this could happen on any med...

good luck,, in making a choice,,,

[New2Him2]

mmcc, all the doc's covered on my ins plan are in the same office and I haven't heard anything better about the other ones there.

As far as stopping taking it, my neuro that I loved moved to Wisconsin and I had to get a different neuro. He is the one who took me off of it, even though I said that I started to feel much much better since starting it.

Thanks for reminding me about the basic low down of each medicine. My brain isn't too good at understanding things when I read them or remembering things sometimes.

bluesky, my PCP is pretty knowledgeable about stuff and if she doesn't know, she looks it up and studies it and when I see her the next month she will tell me about things and explain them to me.

No one has ever said anything to me about IVIg before. I always wondered what that was when I saw people mention it on here or see it in their signature. I'll have to ask about this when I see the neuro if this is also an option.

Peg, Thank You for the info about the deaths(or lack thereof Thank God). I heard that there were 3 deaths. I'm glad to hear that there haven't been any. I was on Rebif, but have been off of it for about 1 - 1 1/2 months now.


Okay, I will probably start on Tysabri. My husband wanted me to do it and then I started to feel okay with starting Tysabri. Then I started to get scared and worried again.

Thank you all for giving me information and encouragement with this whole thing. My husband and I will figure out which one to start on, probably Tysabri.

[Laurellynne]

Not to confuse the issue, but IMHO Novantrone. You've been on it before, had good results and are already immunosuppresed (somewhat), due to interferon. I wouldn't risk Tysabri inductions based on your past therapies. Again, that's IMHO. Perhas by the time you have utilized all the life time dosage of Novantrone (by the way I have been on it for sometime and using 1/2 dosages now buys me more time) there will be other options out there that are more appealing.

As for induction, you still need an IV for Tysabri as you did for "N". May I suggest a port?? I'm quite satisfied with mine and when it's not in use, they just flush it with heparin. My veins are awful and this makes life much easier.

Laurel