1. Treating MS can be unrewarding. Although we can at last reduce the number of relapses, and probably even slow progression, we’re still far short of a cure, and most patients can expect deterioration and eventual disability. Over half of MS patients succumb to depression at some point. Three-quarters use complementary medicine. And for some, trust in mainstream medicine has been eroded by perceived resistance to experimental therapies that many pin their hopes on.
2. The obvious example is the new theory of chronic cerebrospinal venous insufficiency (CCSVI). Seven Canadian-funded studies were launched two years ago to report on the real prevalence of this condition in MS patients and in healthy controls. All are due to report findings this summer. Early feedback suggests that no Eureka moment is coming. CCSVI suffered a major blow in May this year when the FDA warned of the risks of “liberation therapy” while noting that no evidence or clear rationale supported its efficacy.
3. What about the care of patients who have sought CCSVI treatment abroad? There’s no guidance on how to treat them. Many return with limited records and large question marks such as: “Is there a stent in there?” Stents are designed for arteries, not veins, and the risks (and signs) of thrombosis aren’t clearly understood. Vein dilation for other conditions than MS generally invokes antiplatelet therapy, stent or no, but most CCSVI patients get none. Low-dose ASA seems a prudent minimalist preventive approach. If problems arise, consider the possibility not just of stent thrombosis, but also of stent fracture, deformation or migration. There are no guidelines on treating venous stent thrombosis, so hew close to DVT guidelines while referring urgently to a hematologist. Don’t attempt thrombolysis.
4. Cannabis or nabiximols (Sativex) was once the great hope of many MS sufferers. It can alleviate many MS symptoms, including pain in some patients, but is most effective at relieving spasticity. When its global effect on other symptoms is reviewed, it’s fairly mild. But so are the side effects, when compared to current MS therapies.
5. The new generation of MS drugs that began to appear in the ’90s have dramatically boosted efficacy, but also pose greater risks. The gravest is the risk of progressive multifocal leukoencephalopathy (PML), a fatal demyelinating disease occasionally seen in patients who take natalizumab (Tysabri). It appears limited to those who also carry the JC virus, but that’s about half the adult population.
6. Fingolimod (Gilenya), the first oral immunomodulating drug, is currently under investigation by Health Canada after 11 deaths were reported internationally, 4 involving cardiac problems. Health Canada still believes the risk/benefit ratio is positive if it’s used as recommended, as second-line therapy. But be sure to follow the labelling advice on cardiac and BP monitoring.
7. All of the disease-modifying drugs should be stopped during pregnancy unless the need is pressing. In practice, pregnancy improves symptoms in relapsing-remitting MS more than any drug, so this is no sacrifice. But expect a spike in symptoms in the 6 months postpartum.
8. For fatigue, try amantadine. For pain and spasms, use baclofen. For bladder symptoms, consider oxybutynin. Tricyclics can help with emotional lability.
9. Among the 4 1st-line drugs — Betaseron, Rebif, Avonex and Copaxone — choice should be guided by tolerability and effect on symptoms. Don’t track disease progress with imaging, there’s little or no correlation. One in 4 patients on Betaseron and 1 in 20 on Rebif or Avonex will develop neutralizing antibodies that impair efficacy. Switch these to glatirimer acetate (Copaxone).
10. Despite the side effects, we’re getting more, not less aggressive, as we learn how much the disease course depends on early axonal and neuronal damage. When all the data is in, the risky 2nd-line agents may prove to offer the best risk/benefit ratio. Either way, plenty more of these drugs are in the pipeline.