Progresive forms of MS Community Group
I want this to be a forum to discuss openly and honestly about the challenges progresive MS poses. This is NOT a place to down play your severity of synptoms or just MS in general. No more advice that isn't appopriate and no more fear. Monsters live in the dark so lets all shed some light.
I read the latest issue and feel there may be finally some research on PPMS. I copied it to an email for my neuroligist. We'll see. A possible drug to reduce brain shrinkage. I've never been on anything for my progressive form, except Baclophen, which I stopped after 3 wks. There's always research done for RRMS so this clinical study is a great thing. I just pray for more research in this area!Laughing
I haven't been given any drugs, just hug from my neurologist :( I am trying everything I can find on my own but now I have arthritis in both shoulders and am dealing with that pain. Know you're not alone. Not many of us with PPMS. Thanks for the message.
here is some information I found on the chemo drug.
Here in Canada or at least my MS specialist also uses the chemo drug on PPMS
Mitoxantrone for Multiple Sclerosis
Examples
Generic Name Brand Name
mitoxantrone Novantrone
How It Works
Mitoxantrone is an immunosuppressant, a type of medicine that reduces the activity of the immune system. It has been used to treat leukemia and some advanced prostate cancer. Multiple sclerosis (MS) appears to be a disease in which the immune system attacks the covering of the nerve fibers (myelin sheath) within the brain and spinal cord, so immunosuppressants may slow the progression of the disease. Immunosuppressants other than mitoxantrone, though, have not been shown to significantly reduce the progression of MS or the frequency of relapses.
Mitoxantrone may be injected once every 3 months for up to 3 years. A higher total dose increases the risk of serious heart damage.
Why It Is Used
Mitoxantrone is used to treat several forms of worsening MS, including secondary progressive MS, progressive relapsing MS, and advanced relapsing-remitting MS.
Mitoxantrone is one of only two medicines that have been shown to benefit people who have secondary progressive MS that is relapsing. The interferon beta medicine Betaseron is the other. Interferon beta will likely remain the first choice for treating secondary progressive MS, because it does not carry the risk of heart damage associated with mitoxantrone. Mitoxantrone may be tried if you develop severe side effects from interferon beta, cannot take the medicine for some other reason, or continue to have active disease.
How Well It Works
Mitoxantrone reduces the frequency of relapses and helps slow the development of disability in people who have secondary progressive MS that is relapsing or advanced relapsing-remitting MS. Some studies have shown that when mitoxantrone is combined with other drugs such as intravenous methylprednisolone (IVMP) or interferon beta, the rate of new MS lesions in the brain has been reduced.