Novatrone?
 

My neuro suggested that I consider novatrone since I am unable to take any of the other CRAB's or tysabri. I am not a happy camper. Overall, I did still performed well on neuro exam, but he is concerned about the back and neck pain/spasms that I have been dealing over the past few weeks. I told him that I would consider it after I see the results of MRI in May I have a feeling that I will be making another visit to Barnes Hospital for a second opinion. He told me that ethically all he can do is suggest I consider it and then told me all of the cons. Interestingly enough, he could not even remember the name of novantrone until I told him.:rolleyes:

It's a chemo drug. Personally, I wouldn't go near it. But that's just me.

I've learned that these Neuro's don't know any more about these drugs than we do. It's a crap shoot if it works for you. But, you have to try it to see. That's the scary part.

Have you considered LDN? It's the least scary drug out there, in my opinion, with next to no side effects and it's so inexpensive. I cannot figure out why the medical community cannot accept that this drug works for MS for the majority of people that try it. It's almost like they refuse to believe that something so easy will work. :confused: If it doesn't help then you can just stop taking it......with no weaning off or no unpleasant side effects.

Good luck with whatever you decide to try, Barb. :hug:

I already told you Jim's experience but as I said there are many who had great results with it.

Kitty, I agree. It's the same with medical mj, many are reluctant to say it works too. :rolleyes:

Hi Barb....What Kelly said..:hug:

I am not going to immediately, if ever, agree to trying novantrone. The thought of chemo scares me too. But I did say that I would consider it. And I will if ... If only there were some guarantees with these treatments, making these decisions would be easier. Ultimately I know that it is my decision, and I don't really have anyone to help me decide. After my experiences with betaseron, copaxone, and tysabri, I am afraid to try anything new. My body hates chemicals.

Knowing my neuro, he may change his mind by my appointment in May. Back in the Fall, he was pushing imuran, and then backed off and stated by using it it could make me ineligible for new MS treatments in the pipeline.

Guess I will jump in on this subject, I was just told they wanted to try that Novatrone on me. I was due to go tomorrow for the heart work up to see if I was able to start. Well after some researching of this drug, it appears the risks are far more than any known benefits.

So I cancelled all that and told Neuro it was too much to risk. There are some really serious problems that can happen after taking this drug, and I do not feel the need for any added problems. The worse part about it, is that you do not even have to be on this drug long term to see these problems.

It would have been nice for the Dr, to have sat down and discussed all the pro's and con's, but nope he just wanted to get moving ahead on it. So I will just deal with everything the way it is and go about things just as I have for the last 20yrs or so.

It is a harsh drug, that's for sure. And the sad part is that these Neuro's really don't know if it will help or not (well, that's true for all the drugs when it comes to MS). They're using us as a sort of guinea pig. I questioned my own Neuro about the effectiveness of Novantrone after he recommended it to me and he had no idea what the stats were. While I agree that it's up to us to research anything we decide to take it would have been nice if he at least had some data to back up his claims.

I have known several women that took Novatrone and did great on it. They experienced a drop in symptoms, and felt they got their lives back on track. its a BIG drug to pick. It deserves a BIG think. If you are relatively sx free, and are not really struggling at this point, it may not be worth the risk to you. YOu can only take so many doses per lifetime. it can be very cardio toxic, and its a chemo. If you are full of sx, and limping along, it may be worth it, if your still in the mild lane, it may be worth the wait to see what else they come up with.

Its a hard choice, but its yours to make. I know you have worked hard on all of the CRAB/Ty drugs, and have suffered for it. Have you tried LDN?

I hope you are able to get some answers. Please go to the NMSS.org, and look it up.

So true Dej. Jim was told this was his last chance and Novantrone was all that was left. We trusted the neuro who was a ms research doctor. Boy, if we could go back and change that. Worse, I was the one who brought it up after only reading a little on it. Like I said, back then it was so new no one knew the risks except that it was a low dose chemo. To this day I really haven't forgiven myself for suggesting it to Jim and his doctor.

I must be down as a RR or SP (i'm so PP )cause my insurance allowed Novantrone. It helped a RR friend, but did nothing for me but make me throw up. It works for some.......

Kicker, I think it's marketed to SPMS and PPMS. I think it may be the only thing out there for more serious ms patients. Which is scary isn't it?

The literature that I looked at states it is prescribed for RRMS patients who have failed at all of the CRAB's and have ms that is seriously progessing. The other group is SPMS. It did state it should not be prescribed to PPMS. I am not sure that I fit either of these groups other than the fact that I have proven to be allergic to all of the CRAB's and tysabri. My ms is not mild, but neither is it severe. At least that is my self assessment. I guess it is all in the eye of the beholder. On the other hand if I were to experience a significant drop in symptoms for several years, it may be worth it. He was suggesting one year -- just 4 treatments at this time.

See? Things change. Back when Jim was given Novantrone it was for those who have not responded to conventional therapies and have a more sever case of ms. I honestly don't think anyone really knows what works for who, what stage, what severity. lol They also told us it was a one time deal. Four infusions and then nothing else, forever. Jim's now back on Beta which he started back in the 80's. Full circle baby.

It's a crap shoot.

Exactly. We're the ones they're "testing" the waters with to see what works.

Not me.....said the little red hen!! :p

No thanks to me either, Im very slowly going down but I can deal with that. So long as I can still fish and manage everything else at what ever pace I need to, then I will just stay on the same path, til something really comes out that works

Ive been lucky enough, that my symptoms have been slow and I can adjust to the new problems as they occur. So I guess its just a matter of how fast a person is progressing with this that makes the decision of what course is best.

Im willing to try anything if the risk is not greater than the benefits. In this case it seems there is too much at stake.