Is there something that can be used for secondary progressive MS?

[janeff]

Dr, Kantor, I recently viewed the online program "Challenges in Multiple Sclerosis: Emerging Data in an Evolving Therapeutic Landscape" and I am hoping you can help me.   I have a sister who is 60 years old.  She was diagnosed with MS @ 23 and developed mobility problems at 35yrs.  For the last several she has been fairly stable.  She is in a powered wheelchair, has use only of her right arm and hand, has no evident cognitive issues, and lives in her own home with assistance.  She has been on Copaxone 20 mg qd for 13 years.  Prior to that she was on betaserone for 9 months but developed autoimmune hepatitis.  Over the last few months, she noticed increase weakness in her right hand and was treated by a neurologist with a course of Solumedrol which initially improved movement in her fingers, but it did not last.  She also had an MRI which he told her showed no new lesions.  She understands the course of this disease, but has a fierce determination and maximizes her independence.  Her ability to live a happy life with this disease has been extraordinary.  This neurologist told her there is nothing that can be done to stem the progrssion she is now experiencing and indicated he was surprised she shows no cognitive deficits, but that she probably would if tested.  He told her he would not treat her and didn't think anyone else would either.  When I listened to you on the panel, I got the send that you sometimes treat patients who have no hope for anything else with, perhaps the monoclonal drugs or something that is in a phase 3 trial.  Is that so?   Do you ever do phone consultations and can we schedule one?  If not - she lives on Cape Cod about an hour and a half from Boston.  Can you recommend someone?   Susan is intelligent and clearly aware of the nature and course of this disease.  However, she does not want to sit idly by and wait for this disease to progress to quadraparesis.   She actually describes herslf as healthy.  Any ideas?
Sincerely,
Jane

[Dr. Daniel Kantor, MD]

Thank you for the question and for watching the Medscape debate.
There are a few issues here:
1. Does her response to steroids suggest that she may still have an inflammatory component?

This is important because, unfortunately, we don't have any proven medicines for the neurodegenrative aspects of MS (some people use LDN, low dose naltrexone, see our youtube news clip), but we can treat the inflammation.

I would probably try one of the chemotherapies or Rituximab. Despite the negative trial of Rituximab in PPMS, it seems that ut does help some patients.

Fingolimod (the oral medicine being studied in Phase 3 for RRMS) is now foint to be studied in PPMS.

Jacksonville is only a quick flight from almost anywhere in the country and I would be happy to see her. Cape Cod is close enough to Boston that the Brigham group could be considered but I do not know hpw aggressive they are about PPMS.

2. Is there anything to do besides a disease modifying agent or steroids.

Compounded 4-Aminopyridine is a potassium channel anatagonist that prolongs action potentials and may improve her functioning.

[shammyetnl]

A related discussion, Multiple Sclerosis Cure, Alterntive Medicine, complementary Therapy was started.

[patientx]

Dr. Kantor mentioned Brigham& Women's hospital in Boston.  Like he wrote, I do not know how they treat PPMS, but they are pretty advanced in using the newest treatments, including chemotherapy.  Dr. Weiner there was one of the first to use cyclophosphamide to treat MS.

[SassyGranny]

I have primary progressive MS, however many of the people I am around and many of my studies would suggest that your sister should not just wait, but should stay as active as possible and be aggressive.  The doctor can anaswer whether he would consider Tysabri.  Many of the people who attend our MS groups have had success with this treatment.  I would also ask about adding lyrica to her meds.  It was very helpful when added to my long list of medications.  I am on nerontin with lyria and baclafin and zanaflex.  I would also note that for me I had increased baclafin and had to decrease because it created more weakness when increased.Not know what meds I casn only tell you some issures with my situation.  But fught fught fugth and never give up.

Sharon
My spirit remains unbroken!