Question:
My daughter has been on chronic prednisone for over 14 years. As we are trying to wean her off, I worry about the permanent damage left behind. What is your opinion about using medical marijuana as a way to reduce inflammation caused her MS instead of prednisone? 

Answer:
I think you are mixing apples and oranges in your comparison of steroids and marijuana as anti-inflammatory treatments.

Prednisone has broad ranging, often dangerous effects on the immune system. The receptors and gene pathways associated with these effects are well known. Marijuana or it’s component cannabinoids are purported to exert effects on immune function dependent on the eye of the beholder; older studies claimed damaging immune suppressant effects whereas more recent studies in AIDs patients suggest no immune suppressant effects. Whether Marijuana exerts any clinical meaningful beneficial or harmful effects on immune cell function is still highly debated.

It is rare for MS specialist to keep patients on chronic prednisone for such a long time (over 14 years in the case of your daughter). It is quite likely she has a very unusual case of the disease or a rare variant condition if she has stayed on prednisone this long.  Getting her off prednisone could take well over a year but could improve many of the problems associated with chronic prednisone use. You should work closely with an MS specialist to help in this process. Good luck

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
A family member sent me this link and I'm curious what you guys thoughts are on this. https://okyanos.com/conditions-for-stem-cell-therapy/autoimmune/multiple-sclerosis-ms/

The only symptom of MS that I have experienced is optic neuritis within the past 6 months. Would this kind of therapy be used for more advanced MS?

Thanks!

Answer:
Please refer to prior Blogs and responses on this site pertaining to stem cell treatment.

Mesenchymal Stem cell therapy is of no proven value in MS. There are ongoing clinical trials in the US and Europe, but this center in the Bahamas is not performing clinical trials. They are simply charging you a lot of money (not covered by insurance) to give you a totally unproven therapy. There are other “Stem Cell Clinics” in the United States performing the same procedure on anyone willing to pay the price. 

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Question:
I recently had a CBC taken and my neurologist indicated that my blood count is 200 and can't drop any lower. I will be retaking the test and possibly switching to Aubagio. What can I expect? I started out taking a Avonex then Tecfidera and I've also tested positive for the JC virus.

Answer:
I suspect your neurologist is telling you that your absolute lymphocyte count dropped to 200, not your blood count. This is very low. I would recommend stopping Tecfidera, if your neurologist feels this is safe, and waiting until your absolute lymphocyte rises back above 800 before you start the Aubagio. If it takes too long for your lymphocyte count to return to normal, you may need to start another DMT while your lymphocyte count is still low. This will then require ongoing monitoring
Good luck

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Question:
My question is how relevant are 11 copies/mL of JCV DNA in my LP CSF? Dec '15 I stopped Tysabri after 30 infusions with a view to start Lemtrada. Whilst on Tysabri I have always tested JC negative with a titer of 0.18 Now after a further LP test with the same result and a course of G-CSF my neurologist is saying it might be too risky to start an induction treatment. Rituximab has been suggested as an alternative. Over the last couple of months I am sure I have had a relapse and in any case my walking/balance has deteriorated, however this may have been due to a particularly bad infection of my right axilla which has been treated by 2 weeks of oral high dose antibiotics. Should I wait longer to if PML develops or should I start on Rituximab?

Answer:
We and others have observed transiently positive JCV PCR studies on CSF samples from Tysabri treated MS patients with no evidence of PML. In the absence of symptoms or MRI findings over a 6 month period this is not likely significant. However, the results should be become negative on repeat CSF testing and your JCV antibody testing should remain negative. Depending on where the testing was done this could also be a false positive test. Have your neurologist contact the Biogen Medical Science Liason to obtain more specific testing from one of the research labs.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Question:
I have noticed swollen lymph nodes in my armpits and groin since starting Copaxone almost 3 months ago. Can Copaxone cause swollen lymph nodes? Is this a common side effect? If so, anything that can or should be done to help?

Answer:
Copaxone sometimes causes swelling of draining lymph nodes. THis is rarely a problem unless painful. There have been some case reports of cancerous swelling of lymph nodes in people on Copaxone but it is not at all clear that there is a causal relationship. There is nothing to do about the swollen lymph nodes except stopping the Copaxone.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

Question:
I have MS in the brain but, was never told what kind of MS I have so I can educate myself and my family. What kind of MS do I have if it is located in the brain?

Answer:
We do not categorize MS types by apparent location in the Central Nervous System (CNS). The CNS includes the brain and spinal cord and almost all MS involves both, even if it is difficult to see involvement of certain regions of the CNS on standard MR imaging.

But you do raise an interesting question. We do see different types of MS with relatively selective involvement of certain regions in the CNS. Some people have almost exclusive involvement of the spinal cord or the spinal cord and optic nerves with relative sparing of cerebral structures. Others have extensive involvement of the brain with prominent cognitive difficulties and hardly any problems with mobility. We do not as yet know if there are pathogenic differences between these different types based on region of involvement. 

If you are interested in reading how we currently classify MS disease types, please see my most recent blog on this issue ​READ MORE

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego