You did a great job. It is disturbing at times that so little is available for those of us with progressive MS. My understanding is that RRMS is a disease of inflamation (hence, exaccerbations) and the CRAB drugs are designed to reduce inflamation. With SPMS, I don't get exaccerbations and have considered stoppping my REBIF. Your article makes me want to reconsider that. Thanks....and again, great job. - Michael
Hi Michael,
That's the way I understand it. This is so serious, and all I know about the medications is what I read. You seem to be doing well, so maybe Rebif® and you are a good match. Only you and your doctor can make that decision.
Is the Rebif® working? If not, consider Tysabri® or Novantrone®. You know the risk of Tysabri® and PML. Read about Novantrone® here.
Whatever you decide, I hope it works.
I would like to comment regarding your statement that Low Dose Naltrexone is not readily available and has not been studied for use by MS patients. In fact, there have been trials to study the efficacy of LDN for MS and other diseases. LDN can be prescribed by your doctor and purchased from compounding pharmacies.
I was diagnosed with MS in August 2006 and immediately started Rebif. After 2 years and steadily worsening physical disability I changed neurologists, stopped the Rebif and began Copaxone. Still declining rapidly, my neurologist began to doubt the MS diagnosis and ran tests for every possible disease that causes similar symptoms. All tests were negative but I was diagnosed with Cervical Stenosis. I had a protruding disc in my neck that was compressing my spinal cord and could have caused some or all of my symptoms. However, after having a discectomy in January 2009, my symptoms continued and worsened.
In June 2009 I went to the Mayo Clinic in Arizona where I was diagnosed with Primary Progressive Multiple Sclerosis. The neurologist told me that Copaxone has not been found effective in treating PPMS but would not hurt me if I decide to continue treatment. I was told that there is no known treatment for PPMS, but a low fat diet (Swank Diet) may be beneficial as well as supplemental vitamin D. The neurologist told me that all MS patients have been exposed at some point to Epstein-Barr virus, but not all people exposed to the virus develop MS.
When I returned from Arizona I began to research alternative therapies for PPMS and found Low Dose Naltrexone. In high doses (50 mg) it is an opiate blocker used by heroin addicts and alcoholics. In low doses (max 4.5 mg) it temporarily blocks the production of endorphins and enkephalins while you sleep. The brain then makes up for it by producing more of those chemicals, enhancing your immune system and ability to self-heal. There are numerous testimonials and studies showing positive results in people with neurological disorders, autoimmune disorders, cancers, etc.
To date, I have stopped the Copaxone and am taking LDN and 4-AP. 4-AP is a potassium channel blocker that works by filling tiny pores in the nerves and allows more electrical impulses to travel through. (When you lose myelin, the electrical impulses don't always make it down the spinal cord which causes the disability.) 4-AP is another compound that doctors can prescribe though, like LDN, is not a patented MS treatment. It will be available soon for MS patients under the name Fampridine.
The website, http://lowdosenaltrexone.org/ is a good place to start if you'd like to research LDN. I am disappointed and angry that, of the 4 neurologists and 4 neurosurgeons I've seen in the last 3 years, no one told me about either of these drugs to treat my symptoms and possibly halt the progression of my disease. Had I started the LDN 3 years ago, I may not have lost my mobility.
Vicki,
Even a few years later your posting still holds up! I was looking for information about which MS drugs are being prescribed to patients with PPMS. Tomorrow I am going to a local nursing home where 24 of the 300+ residents have MS and are between the ages of 45 - 65~young, eh? I am going to be part of a coping skills program after being asked by a social worker I met while I was making a presentation to healthcare workers about MS. Your article was extremely helpful. Thank you!
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Vicki,
This is a wonderfully informative post. So many questions are asked in relation to treatments for progressive forms of MS. I will definitely save this post for future reference for those questions. Thank you for doing a stellar job.
Thanks Lisa.
If you save it too long, you may find that it is no longer valid. Things in the MS research world seem to be similar to the computer world. Not quite as fast, but new things keep coming up. It's hard to keep up so we have to rely on our neurologists.