MS Progressive Types: Treatments

Many MSers with PPMS are prescribed medication that is approved for RRMS. Copaxone® seems to be popular as a choice in this case.

David Madison, an MSer with PPMS who is a member right here on Health Central tells his story:

"I took Rebif® immediately after my diagnosis. . . . About the first thing I asked them was whether they were conducting any studies in which I could participate. They were doing one with Rebif®, so I jumped in right away. Now the drug is not supposed to cure anything, but instead slow you down from getting worse later. It is also supposed to be for remitting relapsing MS, and mine's primary progressive. Initially we misdiagnosed me because my rapid progression looked like a relapse. I stayed on Rebif® for the year of the study and another six months of follow-up. Then I asked if there was another medication, because the continued rapid slide strongly argued against Rebif® stopping future progression. We tried Copaxone®, which I am on to this day.. . . It seems to have the same concept as Rebif®. Insurance pays the entire $23,000 a year cost with zero co-pay."

Progressive Relapsing (PRMS)
PRMS, considered a sub-type of Primary Progressive MS, has that extra characteristic of relapses that seems to make all the difference where MS medication is concerned.

All the CRAB medications as well as Tysabri® and Novantrone® are approved by the FDA for all forms of relapsing MS, so the MSer with PRMS, which has relapses, is included. If the CRAB drugs do not control the disease activity, Tysabri® or Novantrone® are recommended.

We must remember that these drugs are not a cure but are intended to stop or slow the progression. Hopefully, when taken during the Relapsing/Remitting stage they delay the beginning of progression. With the progressive types, the drugs are intended to ensure the progression is as slow as possible. This is good, or at least it is the best we have.

I did not attempt to cover drugs that are used specifically for symptoms, as they typically cross MS types and work as well for progressive types as they do for relapsing/remitting MS. I am anxious to learn of new treatments for progressive MS. There are therapies that have not been approved by the FDA and are not designated by types of MS. Are they worth trying? Some seem to be.

There are ideas that sound simply outrageous, such as caron monoxide, an odorless, toxic gas, goat serum, and even worm eggs. These are all actual research topics. An MSer in pain or who is feeling hopeless may be willing to try anything to stop the pain or just make things better.

There are some things that, while not curing or slowing MS, actually make the patient feel better, if only for awhile. Some of them have been mentioned here. Patients often turn to complementary and alternative therapies because of the high rate of side effects and low levels of satisfaction with conventional treatments. Here are some non-traditional treatment choices.