Chemo therapies for secondary progressive

[Suzie9]

Anyone here had any of the chemo therapies to treat secondary progressive ms or any other progressive types of ms?

Such as Azathioprine,Cyclophoshamide,Cyclosporine,Methotrexate or Mitoxantrone?

I would be interested in hearing how people have responded to these therapies and if they helped delay progression at all or improved any symptoms.

Are there any other chemo therapies I have not mentioned above used in the treatment of ms?

Aimee.

[summerluvr]

cyclophosphomide is a horrid chemo.  I had this for cancer for only one round but that was enough.  If you want more details on this I can post, but I'll just say its an exhasuting all day infusion, and had the typical chemo side effects and the some!

[sllowe]

Hi Suzie,

I found an interview of docs talking about the chemo drugs. I'll PM it to you if you are interested.

Sorry to hear about your friend, but maybe one of these will work!
Let me know - and I'll send.
-Shell

[ccc142]

i have recently been diagnosed with progressive MS I have had relapsing remitting since 1986..  what does the future hold for me and i am thinking about chemo.  !s this a good idea?

[Lulu54]

Aimee,
You're right about there being different approved drugs here rather than there.  I think I'm remembering tht there are a number of clinical trials taking place, but don't honestly know what is already approved for SPMS.  

Can anyone else help with this question?

Lu

[Suzie9]

Thank you for your replies.

Lulu, in response to why I am asking, it is not to do with me but someone I know who has just been told they have secondary progressive and a type of chemo therapy has been suggested, though not sure which one. Not sure all of them which are licenced in America are licenced here in the UK.

The side affects seem worrying, I have looked them up and as well as heart and liver problems a risk of Leukaemia and other malignancies can occur with some of these therapies.

Would be interested to hear of other treatments found successful for secondary progressive or future treatments which are currently in the trial phase.

Aimee.

[Lulu54]

suzie,
I'm curious as to why you are asking this - did your doctor recommend one of these for you?  

I am still RRMS with copaxone therapy - but DV is right about looking ahead at our other options.

as always,
Lulu

[doublevision1]

Last year I started on Rebif a few months after I was diagnosed with RRMS.  I wasn't tolerating it well, my liver enzymes started to escalate after only a few weeks on it, while only on the half-dose.  In the meantime, my disease course was very active, first and second major relapses only 6 months apart, and very slow for severe symptoms, especially double vision, to remit.  

Concerned about all of this, my neuro initially suggested that mitoxantrone may be the way to go if things didn't improve, though he still thought I was RRMS. Anyway, I stopped Rebif and started on Copaxone last June, and in July, saw a neuro at the Partners MS Center in Boston at Brigham & Women's Hosp, for a second opinion on the mitoxantrone, if things didn't stabilize for me.  He told me very bluntly "We hate that drug here."  He felt it should be a last resort due to its toxicity to the heart.  His recommendation if Copaxone didn't help me, was to try Tysabri first.  I'm still on Copaxone a year later, and doing well other than a short bout of ON a few months ago from which I have fully recovered.

Anyway, long story short, that's the opinion on mitoxantrone from one of the top MS treatment and research centers in the U.S.  We did not discuss the other chemo drugs you mention.  I have read many studies that indicate these drugs, including mitoxantrone, can be very effective to slow progression in both SPMS as well as aggressive RRMS that does not respond to first line DMDs.  They do have the potential for very serious side effects, which is why patients are monitored closely.

I would also be interested to hear if anyone has tried any of these meds and how they did in terms of slowing disease progression, side effects, etc.  Those of use with RRMS need to look ahead and be prepared to act if/when our disease course shifts to SPMS.