After 8 months on Novantrone...feedback sought from other N users

[Lazarus]

Hi
I've been on Novantrone for 9 months and have used 50 (whatever the measure is)
I was better almost right away and from months 2-7 I lived a full and very active life. I am a farmer and worked fully in fields and greenhouses. I was so good that I didn't think about MS every day.

We lengthened the time between infusions from 3 to 4 months. Two weeks before the third infusion my symptoms were back and by the time I got it (4½) months I was in full bloom. We also cut the dose in half for this third infusion.

I got the third infusion one month ago. So, my symptoms are with me every day again. We decided to keep the dose cut in half but shorten the time between infusions to every 3 months.

For 6 months I was running full steam ahead. It was wonderful. I hope shortening the time span and still cutting the dose will be a 'half measure' that works.

Anyone?
Linda

[Laurellynne]

Hi Linda,

I bet you'll do just fine maintaining with 1/2 dose. I can tell you from my own experience that 1/2 dose is working fine.

I started with dose #1 full: based on weight one month later, full dose. Third dose the following month was another full dose. Than I went three months, 1/2 dose. I went 5 months at one point and this year, 6 months between doses. Fortunately the neuro lets me gauge the need to take the next dose.

With spreading the dosing out, obviously you'll get a longer period of dosing due to the lifetime maximum (140, need a nurse to compute the computation, but again based on weight also).

I had my last round Friday. One of the concerns I have is or are infections. I had pneumonia last year, very ill and hard to shake. Two years ago a serious ear infection that left permanent damage to my right ear. Quite painful and lasted months on end. I realize their is a trade off. I isolate myself from the rest of the world for 10-14 days after each dosage. I drink alot of fluids to flush my system to prevent a serious UTI. I definetly suffer from severe constipation, probably from the decadron that is also infused at the time of the ""N".

It has made a major improvement in my quality of life. Sure there are still MS problems, but I long suspect I would be virtually blind or in a wheelchair by now had we (doc, family and finally and must admit reluctantly at first) not made this decision.

Laurel

[Lazarus]

I appreciate your response.

About the constipation...that was the most severe response after my first infusion. Now i take something theday before and the day of the infusion and have no problem.

My neuro was at a conference in April and thinks that there are meds to go to when we need something else. He is interested in Rituxin and Campath. We are interested in the med that just got fast tracked by the FDA.MBP8298.

it is a bit tough to have been so well and to have back tracked...I just needed to talk. Thanks.
Linda

[mmcc53]

Neither lengthening the time between doses nor reducing the dose worked for me. but since you reacted faster than most people on Novantrone, maybe it will work for you. I hope so.

Don't know how it was for you, but while on Novantrone I started swimming and worked up to a mile a day (without using my legs). The day the Novantrone wore off I struggled to do one lap. I think for most people the "wear off" isn't as abrupt.

I LOVED Novantrone, but I used up the lifetime limit long ago.

Since then Tysabri helped for a year, although the improvement was no where near as dramatic as Novantrone. Then it stopped working.

I am about to start a new drug.

[calcal]

Hi Linda,

I'm so sorry to hear that the 1/2 dose and increased time between infusions has affected its efficacy so much.

I guess if this next time, with shortening the time between doses doesn't give you any improvements, you'll have to just go back to the old schedule and see if full benefits will return with the full amount again on the shortened schedule. You may not have the benefits for as long until you reach your lifetime max, but at least you'll have that time feeling good until it wears off. Like you say, there are other things you can try once you've reached your lifetime max of the N, and if you are in good shape when that happens, maybe the transition to something new will help you to maintain that improved level of function.

Maybe also, with a few more infusions in you, it will help to give your body even more time to heal and you'll see greater lasting improvements too.

All you can do is experiment and see what works for you. I hope you see some rebound with the next infusion, and you get those great results back... I loved reading about how well you were doing.

I'm just sorry to hear that 1/2 dose on a longer schedule made such a drastic negative change for you. :(

[ssusan]

Just to throw it in the mix, not being on N or having insight into it, you have been working amazingly hard on the farm all summer and added in an extra farmers' market. It would take a lot of drugs or something for a healthy person to do all you've been doing.

Hope next dose helps and...the first frost :p
-yer pal
Susan

[Lazarus]

So, the upshot is that the 4 month span between infusion 2 and 3 was a bit too long and I had a full 2 month relapse. But the third infusion has taken hold and every day I am getting more energy back. Whew!

Now I can finish the farm year with strength AND start cleaning this messy farmhouse as Thangsgiving lurks right around the corner!
Linda

[calcal]

Oh, thank goodness.

That just made my day Linda! :)

[max headroom]

mmcc53, will you tell us what the next drug is?