Question:
Can I inject Plegridy intramuscularly instead of subcutaneously?

Answer:
We have received several questions regarding the ability to inject Plegridy intramuscularly instead of subcutaneously. During the phase I development of Plegridy, Biogen determined that the subcutaneous and intramuscular route of injection, using the same product for both routes of administration, provides a similar pharmacokinetic and pharmacodynamic profile. This suggests that both routes of administration could be used with Plegridy in people with MS. However, Biogen has not done any clinical testing of intramuscular Plegridy with humans.

Given this information it may be reasonable for you and your doctor to consider a trial of intramuscular Plegridy, only if you are a patient who experiences significant and prolonged injection site reactions with subcutaneous Plegridy but you otherwise tolerate and benefit from this treatment.

This is an off label route of administration and would require your doctor to agree with this route of administration.

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

Here is My Question:
Is there a PML risk with Aubagio treatment? After 3 years with Gilenya I came out JCV positive (1.73) after another year without treatment I am JCV 2.26 and my MS is active. Is it safe to try Aubagio?

Answer:
I am not sure why you would stop Gilenya because of a positive JCV antibody test.  There is no evidence that this test is useful for helping to reduce the risk of PML in patients on Gilenya. The reason is that the risk of PML is so small on Gilenya and all other DMTs except Tysabri. 

So you could consider a large number of disease modifying therapies other than Tysabri.

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

Here is My Question:
Is there any connection between MS and epilepsy???

Answer:
Epilepsy can occur in the setting of MS.  The incidence is <5% (probably closer to 3%), and is likely a consequence of demyelinating damage from MS inflammation in the cortex (Particularly the temporal and frontal lobes).  If this occurs, treatment is the same for focal epilepsy.  It is also important to keep in mind that the MS symptomatic drug, Ampyra, can lower seizure threshold which leads to seizures in a rare minority of patients.  If seizures occur on Ampyra, a patient should come off the medication and be monitored (as there may be no increased risk of further seizures once off).

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente
​#multiplesclerosis #epilepsy

Question:
I have been on Avonex for more than 11 years (03/2004 – 12/2015) and it has been very successful. Because of my insurance, I had to switch to Plegridy in 01/2016 and, as many people, I am since experiencing the redness and rash on injection sites, since I had to switch from intramuscular to subcutaneous. The attempts to go back to Avonex have not been successful with the insurance company.

My neurologist confirmed that Plegridy has been developed also for intramuscular but has then been marketed only for subcutaneous, due to Biogen’s market research prior to the launch. He is claiming that I could use the subcutaneous Plegridy with a longer needle to inject it intramuscular and avoid the injection-site reactions. I could not find any literature supporting this claim and my understanding is that while the active ingredient is the same, the dosage and the non-active ingredients are designed for subcutaneous injection and not intramuscular. Assuming the needle can be changed prior to the injection (Plegridy also exists in pre-filled syringes) for intramuscular injection, how can I be sure that I can inject safely the subcutaneous formula by intramuscular? Can you please give me your opinion? I don’t want to trust blindly. Thank you.

Answer:
We are still waiting to hear from the Biogen clinical team as to whether Plegridy can be administered safely IM. We will provide a response if and when we hear back from them.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Director of Hillcrest Neurology
Professor of Clinical Neurosciences
University of California San Diego
​#Plegridy #intramuscular #multiplesclerosis

Question:
I started Tysabri about 3 yrs ago. I would get blood test about every 6 months and they would be negative, until NOW. They say it's positive. What should I do now. I don't want to die.

Answer:
If you turn antibody positive after 3 years of Tysabri infusions, you have a number of options:

Option 1: continue on Tysabri. This is a good choice if you previously tried 2 or more prior therapies of different classes that were not effective or tolerated, Tysabri controlled your disease completely over the past 3 years, and you have a high risk of worsening after stopping Tysabri. If these criteria are met and your JC Virus antibody index is less than 1.5, you can continue on Tysabri given every 8 weeks with monitoring MRI (for early detection of PML) every 4 months. If your JCV index is > 1.5, continuing Tysabri is still an option but most MS specialists would recommend an alternative treatment. Lemtrada and Rituximab (soon to be Ocrelizumab) are options for highly active treatments that can reduce the risk of severe relapses after stopping Tysabri.

Option 2: switch to another therapy: If Tysabri is the only DMT you have taken or you only took platform therapies before starting tysabri (either interferons or copaxone) and you do not have significant risk factors for severe disease, then it is reasonable to switch to an oral therapy at this time. These options include Aubagio, Tecfidera and Gilenya. 

Good luck. Discuss these choices with your MS specialist to help you make a good decision
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Director of Hillcrest Neurology
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
My dermatologist said that plasma treatment for facial scars and hair loss does suite MS patients, is that true? Also, Does fractional laser on the face cause any harm to MS patients? 

Answer:
We are not aware of any information to refute or support this claim. This lack of information in MS is common, so please share your experience with us if you go through with the planned dermatological treatment. Good luck.

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

Here is My Question:
My question is, I was on Tysabri 2 yrs doing great with no discussion. My doctor stopped my infusion. Said my titer test was high. For 30 days I didn't take anything (they gave me a shot that day before I left) After 30 days I went back to see him and was put on Aubagio. I haven't felt good since. They didn't do the MRIs or blood work that was required. When I questioned why they put me on this they said "oh you will be better off." I bruise badly now and my balance is a lot worse and my memory has gotten worse but when I say anything they say it will be ok. Me, my kids and my friends have all noticed a big change in my overall health in the last two yrs since they put me on this medication but how do I get them to hear what I'm saying? Im not just a number. Im 58 yrs old with kids and grandkids who love me. Don't I have any rights anymore?


Answer:
You absolutely have rights when it comes to selecting a disease modifying therapy. Doctors are trained to listen to their patients' concerns and incorporate their opinions and preferences into the decision making process. We sometimes disagree with our patients’ choices and will reasonably attempt to persuade and guide them to a choice we feel is more appropriate through further education and counseling. If there is a stalemate with the patient insisting on option X and the doctor disagreeing with this choice, you have several options depending on the degree to which you trust and respect the doctor providing the advise.

1. Draw up a list of pros and cons with your doctor and think about it a little more before making a decision
2. Ask to discuss all the options (not just aubagio vs Tysabri): see below
3. Ask for a second opinion from an MS specialist

You really need to know what is motivating your doctor’s opinion and you’re reasons for disagreeing. A common scenario is as follows:
You receive Tysabri for a period of time and feel great. Your doctor picked this treatment because you were JC virus antibody negative and it was the best treatment available at the time. 
After you started Tysabri more treatment options became available and your doctor learned more about the risk of developing PML when you receive Tysabri for more than 2 years. During the course of being monitored on tysabri for 2 or more years of treatment your JC virus antibody index became high (greater than 1.5) . You are now at an increased  risk of PML if you continue tysabri ( about 1 %). 

Your doctor now needs to decide if your MS is severe enough to warrant this risk of PML This is based on some facts and a lot of judgement. He or she needs your help to make this decision. Basically, you need to compare in 5 year intervals your risk of significant disability related to MS (?)  vs the risk of PML (1 in 100). If you just look at all MS patients, the data suggests that your quality adjusted life years (this is a measure that incorporates benefits and risks of treatment on quality of life) if your remain on Tysabri with a high JCV antibody index is about the same as an average MS patient receiving interferon treatment. Of course, you may not be an average MS patient. If your MS is worse than the average patient, then it may be worthwhile staying on Tysabri. 
You and your doctor need to come up with a probably of significant disability (or problems unacceptable to you) in the next 5 years and determine the best course of action

Options include:

1. Increasing the interval between Tysabri infusions to every 8 weeks with more frequent MRI monitoring to detect PML early. There is mounting evidence that this strategy may be effective. For instance, if PML is detected by MRI before the development of symptoms, the chance of  disability is low and the chance of death is 1 in 30. If PML is detected after neurological symptoms develop, the chance of disability is very high and the chance of death is 1 in 3. Therefore, those at higher risk of PML need to get an MRI scan every 4 months
2. Switching to another therapy of which there are many choices besides Aubagio. Some of these choices may have their own risks to discuss with your doctor

Good luck

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

Question: 
My friend was recently diagnosed with MS and she is getting cognitive behavioral psychotherapy to help with depression and memory issues. I have MS as well and have been dealing with depression off and on over the years. I had never heard of it before.  Have you seen this work for people?

Answer:
Here is a previously written blog about cognitive behavioral psychotherapy (CBP)...READ MORE

Question:
I'm 48 and was diagnosed with MS 3 years ago. I am divorced with two teenagers and life is hectic. My mother has pretty much become my caregiver in addition to helping me a lot with my kids. I am worried that I am such a burden to her, especially since she is 78. What can I do to help her?

Answer:
Here is a previous blog written about a great program called Powerful Tools for Caregivers...READ MORE