Help! Mitoxantrone for secondary progressive and no improvement.

[Suzie9]

I have a friend who has had about 3 treatments of Mitoxantrone, is 42 and has Secondary Progressive MS without relapses so far.

Recently His legs have got worse. he has fallen more frequently and once got stuck on the floor and didn't have the strenght to get back up. His right leg has now gone permanently weak. ( He has been walking with a cane for over a year though).

It happened suddenly. Is this a relapse? does it mean the Mitoxantrone is having no affect?

[pushingupdaisies]

Perhaps he needs to re-evaluate with his Doctor about the medicine. Maybe it is just not right for him. It is always important to notify them of worsening symptoms. It may be just a freak relapse but its better for them to know.

[Suzie9]

He has an appointment booked so it will be looked at.

I just wondered if anyone who knows of someone on Mitoxantrone might know if this can happen. getting worse briefly before improvement is seen.

Also his course of secondary progressive MS  so far appeared to have no relapses.I know you can have relapses in secondary progressive but does this sound like it might be a possible relapse?

Also, could it maybe be Progressive Relapsing MS if this was a relapse? He has always gradually got worse too. Or would a neurologist have been able to diagnose that by now?

[Suzie9]

bump

[MarksMS]

I was on M for almost two years, but came to the conclusion it wasn't helping and trying to avoid people, especially children for one month out of every 3 became a real nuisance.

My neuro thinks there are at least three separate diseases/causes that are called MS and they don't neatly align with RRMS, SPMS, PMS. He is bright, very involved in meetings, conferences, and research.

After 10 1/2 years I've taken Copaxone, Rebif, Mitoxantrone, Tysabri and Ampyra.
Aside from the last two which I'm certain are working, neither of us knows if C/R/M helped in the least. They could have slowed progression, but there's no way to know.

Suzie, in reference to if he has PRMS, or RRMS, the lines are blurry, and some drs. don't want to make a diagnosis of anything other than RRMS because insurance companies can make getting expensive drugs for PRMS patients hard and expensive.

He may need to collect private LTD (long term disability) or SSDI at some point, make sure he reports all his symptoms to his dr. in writing every time they meet. This could be the difference between poverty and a comfortable income with Medicare insurance for decades.

Mark

[Suzie9]

Thanks for your message Mark.

We live in the UK  and I think He is covered for all he needs in the future.

Maybe he will be soon put on something else If the Mitoxantrone is not working so will wait and see.

Any other comments from people who know anything about this would be very much appreciated.  Aimee.

[Suzie9]

Anyone know much about Progressive Relapsing MS?

[Suzie9]

Bump

[MarksMS]

Hi Suzie,

I'm sorry your friend has PRMS, it is not a diagnosis one wants but it is not necessarily the end of the world. I think I've had it since my first symptom in 2000, my neuro won't put a label on me because he doesn't want to limit the medicines I can receive, a possible problem here in the USA, the land of insurance companies deciding who gets what.

PRMS is the type / phase of MS where one doesn't have relapses and remissions or RRMS. What happens is one becomes progressively more disabled, never returning to one's baseline. It took about 4 or 5 years for me to need a cane when walking reasonable distances and a few years more to decide I needed a scooter. Ten and one half years later my brain is still sharp, my vision is not affected.  I continue to demonstrate passion, alas my wife doesn't, but I'll leave that to a very different forum.

The rate at which disability increases can vary from slow to barely noticeable to rapid, some folks benefit from Mitoxantrone or Tysabri, some don't.

Google  "progressive relapsing ms" and you'll find more information than you can absorb.

In case you don't see it on the sites you read, I strongly believe PRMS is not a death sentence, one's lifespan is probably reduced, but the reduction is probably small if the progression rate is low.

I am far more likely to die due to heart disease, cancer or a driver using a cell phone than MS, and I am trying to enjoy every day. If anything, having this disease has made me more aware of my mortality, and made me recognize how fortunate I have been in so many respects, made me think hard and painfully about how I will live my remaining days.

I hope your friend does very well.

Mark