Only 10% of those who have MS are affected by the Primary Progressive type. I pointed this out in Part I, and today I am going to continue discussing PPMS by comparing it with Relapsing Remitting MS (RRMS). Let’s start with the dreaded wheelchair.
Wheelchair Prognosis
What about walking? An MS diagnosis of any kind often brings with it a fear of wheelchairs. Almost everyone who receives an MS diagnosis immediately fears the possibility of being in a wheelchair. Leg involvement of some degree is experienced by MSers of all types, but only about 25% - 40% actually use wheelchairs on a regular basis.
For PPMS, wheelchair use is closer to 80%, but that is often over an extended period of time. Seven years after diagnosis, 25% of people with Primary Progressive MS need assistance walking (for instance, a cane). By the 25-year mark, up to 75% of the patients need assistance with mobility.
Gender Ratio
MS affects women more than men. At one time the gender ratio was 2 to 1. In recent years, that ratio has increased to 4 to 1. The reason for the increase is uncertain, but MS is generally considered a woman's disease.
Primary Progressive MS, however, has no such gender bias. Instead, the number of men and women with PPMS is close to equal.
However, the prognosis of PPMS is generally better for women than men. The number of relapses decrease during pregnancy, especially during the last trimester. Clinical trials have found there is generally no difference between genders taking different medications. There are, however, several small trials that do show differences.
In small tests, women with secondary progressive MS have shown slowed progression, and men with primary progressive showed a slow progression. There was no gender difference in clinical trials for relapsing remitting type.
Cognitive Difficulties
In RRMS , some MSers have difficulty with attention, memory, speed of thinking, judgment, and processing visual information.
In PPMS, Cognitive difficulties are less likely to occur because the disease is not centered in the brain. PPMS cognitive difficulties are similar to dementia in aging. Often the difference is largely a matter of time needed to process an activity. One study concluded those with RRMS process slower than those with PPMS and those with PPMS process slower than healthy control subjects.
Treatments
Before the early 1990s, there were no disease-modifying drugs specifically for MS. Then Betaseron was approved by the FDA. There was soon a family of drugs for relapsing multiple sclerosis types. Avonex®, Betaseron®, Copoxane® -- and later, a fourth option -- Rebif®, were known collectively by their initials -- the CRAB drugs.
Novantrone®, a chemotherapeutic agent, and Tysabri® were soon approved, too. And Corticosteroids (commonly called steroids) are mainstay treatments for acute relapses. PRMS is included in the relapsing group so these medications are also valid for it.
PPMS responds poorly or not at all to treatment that seems to work for other types of MS. There are no drugs approved specifically for Primary Progressive MS, but many MSers with PPMS are prescribed medication that is approved for RRMS anyway. Copaxone® seems to be popular as a choice in this case.
