Here is My Question:
Are there any known cases of elderly (85-90 year old) MS patients discontinuing use of Avonex? My mother is considering this, she has been taking the injections for about 10 years. She gives as her reasons: we do not know for sure if they are effective, it is a hassle to get to the weekly appointment, etc. I do think she has not gotten much worse, but she is 89 so she is slowing down! I have spoken to her doctor, and though she does not recommend discontinuing, she would not argue with my mom!

Answer:
It is hard to provide personalized advice without knowing the details of your mother’s case, so let me provide some thoughts to help you and your mother consider your question.

1. At the age of 85 to 90 we would expect an MS patient to be functioning at a reasonable level for her age (a relatively benign longstanding form of MS) or severely disabled. A person falling into either category would not be expected to benefit from Avonex or any disease modifying therapy
2. Relapses are exceedingly rare in the elderly with MS. This means there is little reason to be on disease modifying therapy if the purpose is to prevent relapses
3. There is no evidence that disease modifying therapy will alter disease progression in this age group

It is far more important for your mom to remain physically and mentally as activate as possible and continue socialization with friends and family. Instead of a weekly visit for an Avonex shot she might consider a weekly visit with friends for a mutually enjoyable and stimulating activity. Again, I do not know the details of this case, so please discuss the points above with her physician.

Best of luck to her.

Revere Kinkel MD
Director of the UCSD Multiple Sclerosis Program

Question:
After years of clear MRI's and good neurological exams, why should I keep taking the DMT? I have been through Copaxone, Avonex, Tysabri and now Tecfidera. Would it be unwise to take maybe a month, six months or a year off from everything and come back to treatment if things change?

Answer:
This is a good question, but not one that I cannot reasonably answer over a blog.  (Mainly because I do not know your full story and I haven't had the opportunity to review your scans or examine you in person.)

What I can do is speak on DMT-governing principles which you can take back to your physician for discussion.

Some guiding principles in the use and prescribing of DMTs:

1. DMTs are partially effective but serve an important purpose.  To read more, see my blog here:  http://www.healthcarejourney.com/physician-blog/a-commonly-asked-question-about-disease-modifying-therapies-for-multiple-sclerosis
2. We define disease free status as:  no clinical attacks (or relapses), no increase in disability status (as measured on the neurologic exam), and no change on the MRI scans (no new/enlarging/contrast enhancing lesions).
3. If you have been "disease free" for 10 years, then odds are that the DMTs are not doing that (since they are partially, and not completely, effective).  This may prompt discussion with your physician to monitor off DMTs with periodic MRI and clinical follow-up.
4. The "disease free" status is a high bar and difficult to achieve (in fact, this has to be confirmed by a neurologist).  If it is met, then I have a conversation with my patients about monitoring off DMTs.

In your specific case, I have no way of knowing if you've met the criteria of "disease free" status.  Cycling through different DMTs usually means that your physician has found something that suggests that your prior DMTs haven't been effective enough.  I would suggest you speak with your physician about this.

I hope this helps.

A. Scott Nielsen MD MMSc
Virginia Mason Multiple Sclerosis Center

#MS #diseasemodifyingtherapies #multiplesclerosis #DMTs

This study is being conducted by Brigham and Women's hospital in Boston (but you can live anywhere in the United States and participate).

HealthCare Journey is posting this study because it applies to so many of our readers who have asked about the chances of their family members getting MS if they have MS (or vice versa). 

Featured Project Genes and Environment in Multiple Sclerosis (GEMS)

Mission
The Genes and Environment in Multiple Sclerosis (GEMS) Research Study is dedicated to identifying genetic, environmental and immune factors that may increase a person’s risk of developing MS.

Description
This research study will ultimately enroll 5000 subjects who are at risk of developing MS. This increased risk is correlated with having a first degree relative (parent, sibling, or child) with MS or with having taken certain Anti-Tumor Necrosis Factor alpha (TNFa) agents. Obtaining information about who is at risk for MS will be beneficial in the future in identifying effective ways to screen orprevent this disease.

Here is a Q&A for the study: Q&A

Contact us for more information
For more information, please visit our facebook page or email us at bwhmsstudy@partners.org

Here is My Question:
I am 64 years old and am having symptoms that might be related to MS. My first MRI showed a cavernoma in the temporal lobe with a small bleed. After the second MRI, I was told that it was healing. I am still not well. Would it make sense to have the MRIs looked at by a specialist in late onset MS. If so, who.

Answer
You can certainly have Multiple Sclerosis as well as a cavernoma, but I don’t think this is your main question. Making a diagnosis of MS over the age of 60 is often difficult and requires advice from an MS expert, not only to review the MRI scans but also to review all other elements of your case. 

We have a service we will be adding to this website soon that allows you to upload your MRI scan (if you have it on a CD) and have it reviewed. If you would like to use this service, please lets us know.

You didn't indicate where you are located to let you know what specialists are in your area.

Revere Kinkel, MD
Director of the UCSD Multiple Sclerosis Program

Question:
I have challenged my neurologist's current treatment plan based on information I have obtained from more than one reputable source. He is offering to give me a referral to UT Southwestern in Dallas. Who should I ask for there?

Answer:
For adult MS patients, Darin Okuda and Josh Beh are open for new referrals

Benjamin M. Greenberg, MD, MHS
Director, Transverse Myelitis, Neuromyelitis Optical and Pediatric Demyelinating Disease Programs 
Director, Neurosciences Clinical Research Center 
UT Southwestern 

Question:
I have been advised to take interferon beta 1 three times a week...I am on the injection for 2.5 years now and have suffered I relapse in the this period....is it advisable to taper down and stop my injections?

Answer:
Whether any therapy is achieving your goals and should be continued really depends on the circumstances. A single attack in 2.5 years, especially if it was minor with full recovery or occurred early in treatment (first 3 months) may not be a good reason to stop any therapy. Much depends on your particular risk factors and, in your particular case, whether you’ve developed high titer neutralizing antibodies against interferon. If you’ve developed high titer neutralizing antibodies, interferon therapy should be stopped regardless of how well you are doing. Discuss these issues with your MS specialists and consider quantitative changes on exam and repeat MRI scanning in your decision process. Good luck.

Revere Kinkel MD

Question:
Is MS ever considered dormant or benign ? If so, is it safe to stop MS medications?

Answer:
This is one of the best questions I’ve been asked in a long time. We can theoretically define a state of total remission from MS,  but it would be difficult to prove in a typical clinical setting without improved technologies and practices. This state of remission would probably include the following features:

1. There would certainly be no further relapses, but this is probably a minor point since relapses become rare even in untreated patients as they get older

2. There would be no new or enlarging white matter lesions or gray matter lesions. This can be difficult to define accurately with the type of MRI scans obtained in clinical practice but this could be accurately accomplished with newer  image sequences and quantitative image analysis

3. There would be no progression of disability over time in excess of what is expected in the context of normal aging occurring in the context of a previously damaged nervous system from MS

4. The rate of both regional and global brain atrophy should be no more than age and sex matched healthy controls

5. Better biomarkers of both inflammatory or degenerative disease activity would also help define this state of remission but these are not available yet

I have always felt that patients with few risk factors for disease activity or progression at onset who remain stable by MRI or clinical criteria for 10 years on older partially effective injectable therapies, can probably discontinue these therapies at that time. Specifically, if a patient with a single attack, a small number of white matter lesions and no brain atrophy completely recovers and remains without relapse, progression, new MRI lesions or change in atrophy over 10 years on a partially effective therapy, they probably would have been stable even without the therapy. 

Revere Kinkel MD
Director of the UCSD Multiple Sclerosis Program

Question:
I am having symptoms which are listed among the symptom descriptions for MS but the electric muscle conductivity test was perfectly normal. An MRI also did not find lesions. Does this mean that I don't have MS.

Answer:
The electrical test you mention (an EMG or nerve conduction studies) are usually normal in MS. MRIs can be normal early in the disease but this is not common. You should see an MS specialist for an opinion.

Revere Kinkel MD
Director of the UCSD Multiple Sclerosis Program

Question:
After a three day round of high dose steroids is the immune system suppressed? And if so, how long does that last. Should extra caution be taken in public places with avoiding germs? Thanks.

Answer:
There is minimal if any immunosuppression with a three day course of steroids. Unless your immune system is suppressed for other reasons we do not recommend any isolation.


Revere Kinkel MD
Director of the UCSD Multiple Sclerosis Program

Here is my question:
I was diagnosed in 1996 with RR and based on recent MRIs have little to no increases in lesions but for last 2 years been suffering with constant vertigo episodes and my neuro has been giving me low dose IV steroid treatments. I was on Avonex for 12 years beginning in 1996 before my physician Dr. Phillips recommended me to stop and in 2006 recommended that I remove myself from stress by retiring. All of which I did and was fine until May 2013. That is when the constant vertigo began. So now I am seeing a new doctor who doesn't seem to think I should go on any other type drug program but is treating me with steroids monthly 3 months at a time. However I have been told many times that these steroid treatments are done all at once (like for 3 straight days) so I'm not sure where I go from here. I'm thinking about changing doctors. What is your suggestion?

Answer:
It seems like you have two unrelated questions; what is causing your vertigo and what is an appropriate dosing frequency for IV steroids? First, dizziness and vertigo are very common symptoms even in the absence of MS. It is important to determine the cause so that the most appropriate treatment is applied. There are doctors who specialize in this problem who are called neuro-otologists and seeing one of them would be a good first step. You mention Dr Phillips in your message. If you live in the Dallas area, Elliott Frohman would be a great person to sort out the cause of your dizziness since he is an MS specialist trained in this type of problem.

Second, there are many different IV steroid dosing regimens. How they all got started is story unto itself. One regimen I have never understood is the single dose infusion given once every month. There is no evidence that this regimen in any dose is beneficial. In fact this dosing regimen was initially used as a convenience control group in studies to demonstrate that other monthly therapies like monthly IV cyclophosphamide or monthly IV steroids for 3 to 5 consecutive days were beneficial. In other words patients were blindly treated (i.e. didn't know what they were getting) with a single monthly dose of cyclophosphamide or a monthly single dose of IV methlprednisolone (steroids) and cyclophosphamide was better. We never intended for doctors to treat patients with the control regimen (the single monthly dose of IV steroids) but they do it anyway out of convenience. Similarly, multiple consecutive doses of IV steroids for 3-5 days have been compared to a single dose many years ago and found to be more effective at treating relapses. So I do not advocate the use of monthly single dose infusions of steroids.

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

Here is My Question:
How long can MS go into remission? I was diagnosed in 2008 but my 2013 MRI shows no major progression?

Answer:
On average, MS patients have clinical relapses and MRI lesions throughout the course of the disease. The frequency and rate varies from patient to patient, but in general lesions and relapses are more frequent early in the course of the disease. Based on natural history studies, it is estimated to expect anywhere from 5 to 10 new lesions every 18 months in the first 10 to 15 years of the disease, and of those lesions, 1 out of 10 will likely cause symptoms (relapses). These numbers are estimates and is a generalization based on large number of patients. In general terms, the longer the time patient goes without new lesions/relapses, the better the prognosis. 

Augusto Miravalle MD
University of Colorado Multiple Sclerosis Center

Here is My Question:
My last infusion of Rituxan was Dec 17th. I just found out I'm pregnant Feb 11th. I'm currently 6 weeks. I'm worried that the medicine will effect my baby. I have emailed my doctor but I haven't got a response. Can you please tell me if my baby is at risk of birth defects? 

Answer:
Reports of pregnancy outcomes after maternal exposure to rituximab generally report excellent outcomes. Many of the woman exposed to rituximab prior to or during pregnancy were also exposed to chemotherapies known to be potentially harmful to a fetus, so this is good news. There is no evidence yet of any major birth defects.

Rituximab is present in your blood for up to 3 months and eliminates B cells expressing CD20 from your blood stream for a variable period of time depending on the dose you received. If you received the standard dosing regimen for MS, you can expect rituximab to lower your B cell count for more than 6 months.

Rituximab is an IgG1 class monoclonal antibody and is able to cross the placenta and enter the fetal blood circulation. This ability of IgG antibodies to cross the placenta is time dependent with very little IgG antibody crossing in the first trimester, more in the second trimester and the maximum occurring in the third trimester just prior to birth. As a result, maternal treatment with rituximab prior to or very early in pregnancy often results in less fetal exposure to the drug.

The most common abnormality noted in children born to mother’s exposed to Rituximab is a temporary lowering of blood cell counts. This can exclusively affect white blood cell counts or also include platelets or red blood cell counts. These low counts tend to recover quickly after birth. Both pregnant mother’s and their newborns should be monitored for signs of either infection or bleeding during or after pregnancy although these complications are rarely observed. You should definitely be followed by a maternal fetal medicine specialist during your pregnancy. Make sure you start taking prenatal vitamins if you haven’t already.

Good luck and congratulations

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

Question:  
I know that too much salt in general is not good for anyone but is salt something someone with MS should avoid?

Answer:
Here is a previously written blog about MS and salt. READ MORE

Here is My Question:
Does eating fish daily help MS patients?

Answer:
There is some data that suggests an association between regular consumption of fatty fish and reduced incidence of MS.  However, these studies do not establish a "cause and effect" relationship between the two (only a randomized clinical trial can do that).  The hypothesis is that fatty fish have large amounts of vitamin D (which also has demonstrated an association with lower MS incidence and disease activity).  I typically suggest to my patients that supplementing their diet with vitamin D3 is advisable as doing so may help MS (although we don't know this or sure) and it can also help with bone health (which we do know).  Hope this helps.

A. Scott Nielsen MD MMSc
Virginia Mason Multiple Sclerosis Center

Here is My Question:
When I urinate it takes forever because it comes out little by little. It is embarrassing when I go out with friends and I am in the bathroom so long. I try to limit what I drink so I don't have to go but I'm probably dehydrating myself. First why does this happen and second what can I do about it?

Answer:
You probably have a condition called Detrusor Sphincter Dyssynergia  or DSD for short. Check out a blog I wrote a year ago called, “An Idiot’s guide to urination and MS”. There are definitely treatments that may benefit you so make sure you tell your MS specialist about these symptoms, so he or she can help you. The blog describes many of these treatments.

Also, here is a blog written by a person with MS about what you are describing: Let's Talk Blog 

Rip Kinkel MD

We are starting a new type of blog...with all the flood of information about MS on the internet it can be very confusing and overwhelming.  In an effort to 'boil it down' to something that people can read quickly and get an overview of the highlights/interesting things going on with MS we are starting the "Five Things To Know About MS" and we would like YOU to contribute.  Please send in events, articles, and information that you think everyone should know about MS and we will put the top 5 together.  We are planning to do this each month.  Let us know what you think below!

Here is the blog...FIVE THINGS TO KNOW ABOUT MS

Here is My Question:

I am a registered nurse and the ward is closed due to norovirus. I have RRMS, ao should I be working in that environment? 


Answer:
Use of standard contact precautions and vigilance to protocol should allow you to work safely in that environment.  Any infection can theoretically lead to a "pseudo-attack" or "pseudo-exacerbation" of MS.  This means that old symptoms can re-appear or become more noticeable.  This does not reflect a new MS attack or relapse, but is a reminder of old symptoms (and scars) due to previous MS disease.  Resolution of the infection typically leads to resolution of any co-occuring MS symptoms.

Hope this helps.

A. Scott Nielsen MD MMSc
Virginia Mason MS Center

Question:
With all of the concern about the measles outbreak, I am concerned about the longevity of the measles vaccine. My daughter did receive her childhood vaccinations, but it is necessasry or advisable for her to get a booster now that she is 25 and has had MS for over 15 years ?

Answer:
A 25 year old who previously received the standard 2 doses of the MMR (measles, mumps, rubella) vaccine or 1 dose of the MMR and a 2nd dose of measles vaccine alone will not require a booster as an adult. If you have any doubts about your vaccination history it is easy to get tested for your immunity against measles (a blood test). 

Some individuals vaccinated in the early 1960s received an older, less effective inactivated measles vaccine. Most of these individuals later received the live attenuated MMR vaccine. Again, if you are concerned that you may be one of these people it is easy to get tested or simply get the two doses of the live attenuated measles vaccine

Lastly, people born before 1957 do not require vaccination. Because of the repeated epidemics prior to vaccine availability, all of these individuals are immune.

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

Here is My Question:
How can I get into a clinical trial stem cell research program?

Answer:
Any clinical trial can be found at www.clinicaltrials.gov

If you search for stem cell trials in Multiple sclerosis, you will only find one actively recruiting study in the United States. This is run by Dr Burt at Northwestern University in Illinois. 

You will also come across mesenchymal stem cell trials. These are entirely different from the stem cell trials recently reported with no evidence of benefit yet in Multiple sclerosis

Revere (Rip) Kinkel
Director of the UCSD MS Center