Here is my question:
Hi, I just watched a short interview with Dr. Foley from Rocky Mountain MS center by Dr. Kantor at ECTRIMS. They were talking about Dr. Foley's study on transitioning patients from Tysabri to Tecfidera, but they didn't mention the principal findings. Do you know what they observed, or where we can find these results? Thank you!

Answer:
Dr Foley’s study showed that approximately 75 % of patients on long term Tysabri treatment were able to switch to Tecfidera and 25 % had to restart Tysabri because of recurrent disease activity.
38% of patients experienced a relapse after stopping Tysabri and switching to Tecfidera.
These numbers are similar to the rate of relapse observed when Tysabri treated patients are switched to other disease modifying therapies.

Below is the abstract and poster that was presented at ECTRIMS.

A PILOT STUDY TO ASSESS DISEASE STATE STABILITY, EFFICACY, AND TOLERABILITY IN A NATALIZUMAB TO DIMETHYL FUMARATE CROSSOVER DESIGN

JF Foley1, T Hoyt1, A Christensen2, D Blatter2
1Rocky Mountain MS Research Group, Salt Lake City, UT, United States, 2Mountain Medical Physician Specialists, Salt Lake City, UT, United States

Background: While natalizumab therapy is highly efficacious for the treatment of multiple sclerosis (MS), it does carry significant risk for progressive multifocal leukoencephalopathy (PML) in patients who have an immunosuppressant history, >=24 natalizumab doses, and JCV index of >=1.5. A crossover to dimethyl fumarate (DMF) is an option for many of these patients. The data regarding a crossover of this nature does not yet exist.

Objectives: To determine disease stability for 24 weeks in patients who have crossed over from natalizumab to dimethyl fumarate therapy.

Methods: 30 subjects at high risk (>2 years on therapy, JCV index >= 1.5) for developing PML on natalizumab were enrolled in a study to monitor their transition to dimethyl fumarate. Patients were observed for 24 weeks, starting from their last dose of natalizumab therapy. Outcome measures included disease stability defined by EDSS, annualized relapse  rate, modified fatigue impact scale (MFIS) and the symbol digit modalities test (SDMT), visual analog scale (VAS), and timed 25 foot walk test. MRI activity including spectroscopy was measured at Week 0, Week 4, Week 16, and Week 24.

Results: Of the 15 patients who have completed the study, mean MS disease duration was 16 years, mean number of natalizumab infusions was 67, and the mean length of the last 6 infusion cycles was 37 days. From the date of the last infusion, it took an average of 22 days to begin the 120 mg dose of DMF and another 6.8 days to titrate to the 240 mg dose. At baseline, the JCV index scores ranged from 1.24-3.95. EDSS score increased by 0.5 in 4 of the 15 subjects. Thus far, 2 of the 15 subjects have transitioned back to natalizumab.

Conclusions: The data lock completing the study will occur in August of 2014. All outcome measures will be presented.

You can download the poster (PDF below) or go to the ECTRIMS website (see link below). The Poster Number is P877.

Here is My Question:
What effect does the Butrans patch have on pain associated with lesions on the cervical and thoracic vertebrae?

Answer:
The Butrans patch is a long acting narcotic only indicated for severe chronic pain requiring around the clock narcotic pain relief. I would not recommend this treatment for the central or neuropathic pain and abnormal sensations associated with the spinal cord lesions of multiple sclerosis. There are many options other than chronic narcotics to treat the type of pain associated with multiple sclerosis. In my experience those people with MS who start treatment with chronic narcotics rarely get off these medications and often develop many additional problems related to narcotic dependence. I would recommend discussing additional options with an MS expert or a pain expert.  Good Luck.

Rip Kinkel, MD

Here is My Question:
Would you consider an allergic reaction to Tecfidera if after taking the DMD for 2 weeks I had an increase in my eosinophils with symptoms of bloating, sharp, burning stomach pain, loss of appetite, and fever. Along with this, included a drop in WBC from 5.8 to a 3.5 and a UTI?

Answer:
I would certainly call these side effects of Tecfidera but not an allergic reaction:

1. The elevated eosinophils and the slight drop in white blood count is common and not a specific concern. Your doctor will or should be monitoring your blood counts over time to make sure this is not a problem with longer use of Tecfidera

2. The fever is likely related to the cutaneous reaction that occurs with Tecfidera or the urinary tract infection; the urinary tract infection may just be a coincidence, since these are common in people with MS

3. The gastrointestinal symptoms are all most likely related to Tecfidera and treatable

I would talk to your MS specialist or nurse as soon as possible about ways to decrease or eliminate these side effects. These solutions may include temporarily decreasing the dose of Tecfidera and/or prescribing certain medications to alleviate the gastrointestinal symptoms. In the meantime, try eating something fatty like peanut butter or almond butter immediately before each dose of Tecfidera to see if this helps with the stomach pain.

Good luck and I hope you feel better soon.

-Rip Kinkel

PLEASE NOTE:  The information/opinions on this site should be used as an information resource only.  This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment.  Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.

We have listened to you about wanting to connect with other people with MS, and based on what you want we have come up with the concept of HealthAllies.  We are starting with MS, but will design this to work for all diseases/health issues.  Please watch the video and then CLICK HERE to sign up!

Please sign up on our home page http://www.healthcarejourney.com/! We will contact you and let you know the next steps.  If you find out more and decide not to be a part of the beta test, that is no problem. What have you got to loose?

Here is My Question:
I have a question regarding pediatric cognitive problems, caused by lesions.

Our story:
We noticed that our little girl has some learning problems at about age 5, when she had difficulties to start reading and basic math. First year at school she struggled, and after that the homeschooling was recommended as nor teachers, nor doctors were able to detect her problem. Overall a bright, savvy child just “lost” some she learned again and again. The guess was – she can’t tolerate the stressful environment in the classroom.

Last November, at age 11, she had a bout. After an usual morning at 11 am she announced that she can’t remember how old is she, she become sleepy, then didn’t recognize numbers on computer screen (asked “if that’s 47” while looking at number 132), then vision went blurry (“why it’s snowing inside the room?”, and then within an hour whole left side was fully paralysed. She was conscious all the time.

Hospital: after first series of tests in ER she was appointed to neurology. MRI showed two small, sharp edged lesions in brain, no lesions in spinal cord. No fewer, no previous vaccination or fly symptoms. No inflammation of any kind. Doctors decided that there is no point to put her on steroids or any other medications and just monitored her closely for two weeks. The complete paralysis of the left side eased the next day, and about 24 hours after the attack she was able to make few wobbly steps with a support. The weirdest part – while she seemed normal herself mentally, she didn’t recognize some numbers (mixed 6 and 7, 8 with 9) and was not able to count up to 10. She was not able to even add 2+2.

The series of tests showed: LP - no oligoclonal bands, EP – unilateral ON.

Doctors just shrugged shoulders – very unusual case of ADEM, OR, most likely, beginning of MS. We were released after 14 days when girl was able to walk without a support 5 steps and was improving.

Physically now, 10 months later, she has improved a lot. Severe fatigue that kept her in bed for days has nearly gone now and while she gets tired easier than before, she is almost able to live normal (she takes a nap right after school work now which helps). She starts limping lightly only when she feels tired, and her left foot is a bit crooked out at ankle.

Mentally situation hasn’t improved much, especially with math. She had worked very hard and went through all the math from beginning up to her year now, but she can’t do arithmetic without a calculator. She understands, what she must do in math, but mechanical arithmetic she hasn’t got back despite her efforts.

Her language also has some problems – she gets very tired with reading (hard concentration tires her out), and has started to mix up words (like using “yesterday” instead of “tomorrow”, and not even noticing such a mistake) or even loosing meaning of simple words ( one day at the shop she pointed to cigarette packs, asking what’s that, and after long explanation it was like “oh, yes, that’s what you light with the lighter!”, weird things like this).

Three months after the first MRI both lesions were still in place, no new lesions.

Nobody is able to predict will this turn into full scale MS or not right now, but I would like to find some OPINION on these cognitive problems. Is there any chance that they will disappear, and - if not – what to expect?

Right now I see two options – pressing hard on her schoolwork in hope that it will improve, or – let her do things at her pace, leaving all academic aspirations behind.

It’s only medically related question, and you can only give an OPINION, but it would be a great help if you would share your experience from similar cases – if child had shown cognitive problems long before the first episode, is there any chances she will regain the cognitive level back to normal at some point or, when cognitive decline is detected at early age, it remains for the rest of the life?

I do not want to put the pressure on her schoolwork if that’s basically pointless, but I also do not want to pussy her around and let her slip hopelessly behind her peers thus destroying her future.


Answer:
I am sorry to hear about your daughter’s difficulty but glad to hear that she is making some progress towards recovery. Cognitive problems are very common in pediatric onset MS and require a management approach that differs from adults for two reasons; first, children like your daughter are at an age when the brain is potentially very adaptable and can recover from injury to an extent not possible in older adults. This makes it worthwhile to get expert assessment and individual learning plans and cognitive rehabilitation started as soon as possible. At the same time their brains are uniquely vulnerable to a variety of stressors and injuries; for this reason it is important to treat them aggressively and be attuned to the development of psychiatric issues (anxiety and depression) that may hinder their recovery. It is also important to solidify the final diagnosis as soon as possible.

There are a group of Pediatric MS Centers around the country and in Canada where you can take your daughter for an expert evaluation. In addition many comprehensive MS Clinics at academic centers around the country have programs for the evaluation and management of pediatric MS. You may want to start by contacting a  pediatric MS Clinic in your geographic region: options include the National Pediatric MS Center at Stoney brook (Long Island New York), The Pediatric MS Clinic at UT Southwestern (Dallas Texas), the University of Buffalo Pediatric MS Center (Buffalo New York), or the Pediatric MS Center at the University of California San Francisco. As for support for you as a parent, the PMSA (Pediatric Multiple Sclerosis Alliance) might be able to help and understand what you are going through. (READ MORE)
 
- Rip Kinkel, MD

Dear Ann,

So sorry to hear about the challenges and frustrations regarding your daughter's experience and symptoms. This process is difficult and diagnoses often require time.

While we cannot give you specific guidance on your daughter's condition, we can get you connected with folks who have abundant expertise with these issues. Cognitive changes have been documented in children with all forms of brain based inflammation (ADEM and MS). The key is to be seen at a center that has a neuropsychologist integrated into the MS practice - these individuals have a unique ability to sort out the cognitive deficits and advise on management.

There are many centers that can do this, but a few to consider would be Children's Medical Center Dallas, CHOP, Brigham and Women's, UCSF and University of Colorado in Denver

--Ben Greenberg, MD

Question:
I have had MS for 5 years.  Lately I have found myself either crying or laughing a lot and I can't seem to control it. I'm staying home a lot because it is so embarrassing. Does my MS have anything to do with this?  Thanks.

Answer:
Pseudobulbar Affect (PBA) is a disorder of emotional regulation that occurs in about 10% of people with MS. We have written about this and also have a link to use the Neurologic Study-Lability Scale (CNS-LS) for pseudobulbar affect (PBA) CLICK HERE. You can answer the questions to see if they apply to what you are experiencing and then should contact your doctor for further follow up. Good for you for seeking help, as there are treatments available and no one should have to stay at home because of this.  Keep reaching out.  Good luck.

Hi Everyone,

We have received requests from some of you asking to write blogs for the site.  We think this is great! We have added a space for people to submit blogs…please let us know if this makes sense/works/is easy to use, etc. Here is the page on the website where we added the ability to submit a blog…http://www.healthcarejourney.com/patient-blog

What are the rules for blogs?  The only rule is that since this site is dedicated to helping those with MS empower themselves with information to have the best quality of life possible, we request that your blogs share your knowledge/experience with MS so that others might learn from you in a positive way.  You could write one and never write another.  You could write one every day.  They can be as long or as short as you want.

We will read them before posting them, so no need to proof them or worry about typos, etc.  We will do that. Please provide your name and email address so that we can contact you if we need to.  Also note that we will NOT post your name, unless you explicitly ask us to do so.

Help others with MS learn from your knowledge and experiences with MS!

Best,
The HealthCare Journey Team

Here is My Question:
I have been taking various DMTs since I was diagnosed with MS 17 years ago.
Currently I am taking a compound of estriol and Copaxone due to the promising results posted so far by Dr. Voskhul. Currently there are studies of estriol with other DMT in 4 universities. In your opinion, due to the simplicity of taking an oral pill (Gilenya) along with Estriol, would this be sufficient? Dr. Voskhl chose Copaxone because the results of this drug would take a long time, so the study of estriol could be examined exclusively. Thank you!

Answer:
I am not aware of any ongoing or published studies of estriol in combination with any DMT other than Copaxone. This is confirmed by a review of registered studies at the clinicaltrials.gov website.
Rhonda Voskhul’s preliminary phase II study showed potential benefits of estriol in combination with Copaxone on the reduction of relapse rates in the first year of treatment; this benefit disappeared over the second year of treatment. There are many potential reasons for this loss off efficacy over time and it is too early to advocate for using this or any other DMT in combination with estriol in clinical practice. Phase III studies will resolve this issue and, more importantly, phase III studies will help us understand if estriol has any effect on physical or cognitive disability progression or surrogate markers of disability progression.

Rip Kinkel

PLEASE NOTE:  The information/opinions on this site should be used as an information resource only.  This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment.  Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.

Here Is My Question:
What is the status of anti-lingo, and will it be available as an FDA approved drug for MS by 2018?

Answer:
Two Phase II trials of anti-Lingo are currently enrolling patients; the results of these studies will determine if phase III trials are warranted. Since this is a therapy being developed for a new indication it is unlikely that it will be available by 2018. 

Rip Kinkel, MD

Here is My Question:
My partner has been recently diagnosed with MS. She is having difficulty sleeping through the night and is "hotter". She needs a fan directly on her while trying to sleep. Appreciate your thoughts.

Answer:
There are many reasons people with MS, especially women, may feel hotter at night and require a fan or air conditioning to sleep. The most common reason is hormonal fluctuations as a woman approaches menopause (for various reasons menopause may occur earlier in some MS patients). MS may also affect temperature regulatory mechanisms, such as normal vasodilation in the skin, and make a person feel hotter. Lastly, certain medications like those given to patients at night to control bladder urgency and nocturnia may create problems with temperature regulation. Have your partner discuss these issues with her doctor and see if he or she can find a remedial cause.

-Rip Kinkel, MD

Here is My Question:
Why did I have severe problems switching to 40 mg Copaxone? I have been on the 20 mg for 14 years. On the 40 mg I have had loss of appetite, mood swings, sleep problems and have felt so unwell. I saw another woman reported the same problems. How long should I wait to make the switch back? I was on the 40 mg for 6 weeks before things went south. Thanks for any feedback.

Answer:
I am sorry to hear about the problems you’ve experienced since you switched to the new formulation of Copaxone. To my knowledge loss of appetite, mood swings, sleep disruption and generally feeling ill on a daily basis would not be problems related to Copaxone. These are all common symptoms of depression which by itself is very common in people with MS. There are other possibilities as well that only your doctor, who has an intimate knowledge of your case, can assess adequately. You should discuss these symptoms with your doctor as soon as possible to get you on the road to recovery. Good luck.

Rip Kinkel, MD