ALS and immunotherapy

  Last year (February 10, 1998) a person had sent a post to your forum asking for information about an experimental immunosuppressant treatment that had been shown to improve and stabilize both multiple sclerosis and amyotropic lateral sclerosis in several patients with these diseases.  It involved an immunomodulating protocol of monthly therapy with plasmapheresis, followed by 3 day treatment with IVIG, and low dose methylprednisone, cyclophosphamide, interferon a, interferon g, octreotide and cyclophosphamide.  
  Since that time I have heard nothing more about this potential treatment and was wondering if you have any new information regarding it (such as if more trials have been done with it, where these trials are being done etc.).
  I would also like to confirm that this treatment was found to help ALS patients since I keep reading that this disease is not an autoimmune disease (unlike MS) and that there is nothing currently that can effectively treat this neurological disease.
  I would very much appreciate any information that you could provide for me.  Thanks.
Dear Andrea:
The current treatment for MS during an exacerbation of the disease is high dose steroids (prednisone) and during the quiet times, beta interferon or alpha interferon.  This is not experimental with MS, as these treatments have been shown to be effective in the treatment of MS.  These treatments are standard of care.  In cases of refractory MS, we here at the Cleveland Clinic will try cyclophosphamide together with high dose steriods to calm down an exacerbation of MS.  Currently, there is not an interferon G, only alpha, beta and gamma.  There have been some trials using IVIg with MS.  There have been equivicol responses and the data is not crystal clear whether the broad population of MS patients would benefit from such treatment.  The current thoughts about ALS are still not clearly defined concerning etiology.  There is a small group of this population that is connected to a loss of enzyme activity of superoxide dismutase.  However, the larger population of ALS patients do not have this mutation.  There is no clear treatment of ALS.  Several clinical trials using growth factors have failed to provide significant benefit.  I think that there are web pages describing both of these diseases in more detail if you want to take a look.
Sincerely,
CCF Neuro[P]