Here is My Question:
I have a few questions: 3 days ago, I took my 2nd FULL dose injection of Plegridy. Is it normal to experience a loss of appetite while on Plegridy? 

With the first 2 injections (1/2 dose & 3/4 dose) I had minimal side effects. But, the 1st full dose injection and the 2nd full dose injection gave me intense FLS. Although they only lasted 1-2 days, I wanted to know if it's normal that my side effects got more intense, particularly after the 2nd full dose injection? 

Lastly, after how many (full dose) injections can I expect my body to better handle the side effects and ease up a little? 

Answer:
Loss of appetite (usually labeled as anorexia in the PDR) is not uncommon as part of the flu like side effects of interferons. It is certainly not unusual for the side effects to worsen with the first few full dose injections. The side effects improve significantly in most people within the first 3 months at full dose. If they do not, I would certainly consider another DMT.

Premedication with ibuprofen (motrin) or naprosyn (aleve) helps a little but you need to take these medicines regularly for 2-3 days after using Plegridy because of sustained biological effects. Your MS specialist can give you other suggestions if these premedications do not work.

Some people get nauseous and loss their appetite because the Premedication they are using upsets their stomach. You may require a coated formulation or another better tolerated medicine if this is the case.

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:
I have been taking Tecfidera for three months. I take a stomach protecter, an aspirin too, and take Tecfidera with food, but I still have terrible stomach pain, diarrea and bloating...it is driving me crazy....

Answer:
I'd suggest looking at the prior blog about Tecfidera and side effect mitigation (see link below).  There is a section about GI side effects.  If this is insufficient for your side effects (and you find them unbearable), then you may need to discuss transition to another therapy with your neurologist.

http://www.healthcarejourney.com/q--a-for-virtual-ms-center/thoughts-on-tecfidera

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente

Here is My Question:
I know that "pins and needles" feelings is a symptom of MS, but what if it is a very mild sensation of "pins and needles. Can that be a symptom of MS? It feels like more of anoff and on shooting of pins and needles.

Answer:
Pins and needles sensation can be intermittent or persistent, mild or intense. Although these symptoms are common in MS patients, they are not all diagnostic of MS or even very helpful in establishing a diagnosis of MS. This is because pins and needles sensations are common in everyday life (limb falling asleep) and in people with other conditions.
​
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:
Stiffness with MS, especially legs and arms...Is this common and what is the reason? 

Answer:
Stiffness, muscle spasms, and tightness (i.e., spasticity) is not uncommon in MS.  This is especially true when there is a significant burden of disease in the spinal cord.  The spinal cord carries axons that provide an inhibitory (relaxing) signal to the motor neuron that then goes to the muscle.  When the inhibitory signal is affected, the motor neuron is left unchecked which can manifest as muscle tightness.

A simple treatment includes stretching.  Other medical options can include baclofen, tizanidine, klonopin, etc.  These medicines, if used, need to occur under the direction of your physician.

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente

Here is My Question:
I had a mild flare beginning of February and took 3 days solu medrol. A few days later had a feeling of numbness from head to toe so did another round of solu medrol and still the same. I'm on Avonex but they are switching me to Copaxone. My question is will this go away or is there anything else that can be done? It's interfering in the way I do things. I'm a cashier and currently on a medical leave because my hands are numb. Any ideas? Thanks.

Answer:
There are 2 topics/questions in your submission:  1) disease modifying therapy effects and 2) symptoms.  Briefly, the decision for when to switch from drug x to drug y is based on clinical course on drug x as well as MRI surveillance of the MS disease.  Whether you will do better on copaxone than avonex, is anyone's guess.  I would add that if you have spinal cord lesions from the MS, then medications like Avonex (not Copaxone) may aggravate the symptoms that come from the spinal cord lesions (in my experience).

Regarding your symptoms, if your problem is numbness (ie, can't feel anything) then time is likely to be required (to allow recovery).  If you are having problems with feeling abnormal sensations (ie, burning, tingling, etc) that are overwhelming, then your doctors can use medications temporarily to help take the edge off those sensations (medications like gabapentin, Elavil, etc).  Numbness (or complete lack of sensation) won't be helped by those medications, but time would be required for your nervous system to recover and re-establish connections around your MS lesion that cause the symptoms in the first place.

If you are also clumsy in the hands (ie, not able to reliably operate the register), then your doctors may use physical therapy and/or occupational therapy to hasten recovery.

Hope this helps.  

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente

Here is My Question:
I have MS, essential thrombocythemia (ET) and hemochromatosis. I take hydrea for my ET and Gilenya for my MS. My problem is my lymphocytes are .22 and my ast/alt are 4.5x the upper limit. I don't want to stop taking gilenya. It seems the two meds are amplifying the immune system suppression. I have read several cases of taking GILENYA every other day. Any opinion on doing that? Or should I medicate different for my ET? I only take hydrea 500mg every third day.

Answer:
Essential thrombocythemia (ET) is a condition where the megakaryocyte (cell in the bone marrow) release large amounts of platelets into the blood stream to aid the body in blood clotting (and avoiding bleeding out).  ET is a condition where you have way too much platelet production that can lead to several unwanted problems with blood clots, among other things.

There are a few early studies of the use of S1p modulation (this is the target of Gilenya) that may affect the differentiation (development) and activity of megakaryocytes.  Animal models suggested that S1p modulation may increased platelet counts.  On the other hand, there have been reports of lowering of platelet counts on gilenya in patient with multiple sclerosis.  If this is the case for you, then Gilenya may very well be playing a dual role for the MS and ET.  When reviewing the literature, I am not aware of any data that proves Gilenya helps ET.

The bottom line is that Gilenya, like our other therapeutics, are not benign and can cause unwanted problems (in your case, the liver function tests are quite elevated).  I'd strongly suggest that you speak with your neurologist about your unique situation (and your hematologist) to determine if Gilenya is helping the ET.  If the answer is "we don't know" or "probably not", then you may want to look to another DMT if your liver function tests continue to stay elevated.  However, as you point out, we do use Gilenya on an every other day basis with good results (this is off label) for many patients with MS.  That should also play a role in your doctors' (and your) decision making on transitioning to another therapy.

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente

Here is My Question:
I am currently working for a man with MS and trying to help. He is having a real hard time sleeping at night and is taking medications that are not working and really can't function or focus the next day and is not able to do much like go outside and get sun, think, etc. and is very unhappy. He also has restless leg syndrome and is on a medication for that as well. He is struggling...can you help please?

Answer:
There are lots of reasons for not sleeping, all of which require different treatments. If we assume his only problem is restless legs syndrome, then he either needs the dose of his current medication adjusted or he needs a different medication. He should discuss this with his doctor. Common additional reasons for not sleeping in MS patients include the following:
1. Leg spasms and nocturnal leg movements
2. Sleep apnea
3. Pain
4. Depression
5. Anxiety
6. Waking up to urinate frequently
Good luck with helping him. Have him start by contacting his MS specialist and ask for a visit visit to discuss only his sleep problems. I often find that people with MS do not establish clear goals for their visits and this lack of preparation means the doctor does his or her thing and never gets around to addressing the most important problem.  Have him write out the reasons he believes his sleep is disrupted before the visit and have him specifically ask for a visit to address this issue alone.

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

Here is My Question:
Hello, I am a 31 yr old male diagnosed with MS last year. I was also diagnosed with Erectile Dysfunction and low testosterone - my MS Specialist told me that it is related to MS. I'd like to know your opinion on this. Also, myself and my wife are eager to start our family, but due to these issues we are not able to. I saw a urologist last week and he recommended starting Clomid (50mg -3times a week) along with Cialis as needed. I would like to know if Clomid has any relation to a MS relapse or makes MS symptoms worse? Right now, I have very mild MS symptoms like tingling and slight numbness. I'd love to start Clomid and start trying, but I am just worried about the MS symptoms getting worse with Clomid? Thank you in advance for your response.

Answer:
While ED can be related to multiple sclerosis there are lots of potential causes that require a workup and examination from a urologist. If this is indeed found to be a cause of ED, there are a variety of approaches in terms of management. The use of Clomid can be justified and there is not a known contraindication.

Benjamin M. Greenberg, MD, MHS
Vice Chair of Translational Research and Ambulatory Care
Department of Neurology and Neurotherapeutics
Director, Transverse Myelitis, Neuromyelitis Optica Programs
Co-Director, Pediatric CONQUER Program
UT Southwestern Medical Center

Here is My Question:
I've been injecting Copaxone 20 mg and then it's generic form for three months now (newly diagnosed RR). I have also become incredibly sick with a virus one month (lasted five days), and bacterial infections (upper respiratory, eyes; lasting 5-7 days) the subsequent two months. I've also had a week of relapses all three months. My understanding was Copaxone/Glatopa was not an immune suppressant but was instead supposed to increase the amount of healthy white blood cells and their action in my immune system, reduce relapse rates and slow lesion/disease progression. Instead, I feel as if everything's becoming worse in my body. What is happening? How can I be this sick with a virus or bacterial infection monthly, continue relapsing (though I'm relapsing a bit less) and have any sort of life? Is this common for users of this drug? I'm beside myself. 

Answer:
There are many potential explanations for the recurrent infection but without knowing the details of your case it is hard for me to comment. What I can tell you is the following:

1. Copaxone or Glatopa does not suppress your immune system and I doubt it is responsible for the prolonged infection

2. Steroids can suppress your immune system, so if you received steroids in the past 3 months this may be your explanation

3. All disease modifying therapies like Copaxone take time to start working. It is not unusual for people to relapse in the first few months on treatment. It is the relapses beyond the first three months of treatment that create greater concern that the drug will not be effective if continued

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:
Is it possible to have multiple sclerosis with out having your lower body affected? 

Answer:
There is no rule that says the lower body must be involved for a person to have MS although it would be unusual for a person to experience MS for years without symptoms or examination findings eventually developing in the lower extremities.

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

Here is My Question:
I have MS and went blind in one eye for two days. Scariest thing ever. My doctor said this is common in MS. My questions are why is this common in MS? Why does this happen/what is going on in my body with the MS that would cause just one eye to loose sight (so weird), and is there anything I can do to prevent it from happening again??

Answer:
Losing vision in one eye can happen in MS due to a condition called optic neuritis.  The vision becomes blurry because of inflammation in the optic nerve (the optic nerve connects your eye to your brain).  With MS, the body's immune system can sometimes cause inappropriate inflammation and damage to the optic nerve leading to temporary vision loss. The immune system's attack on the optic nerve may flare up, and then the vision becomes blurry.  The vision returns back to normal (or almost back to normal)  when the inflammation resolves and the optic nerve has time to heal.  

Usually patients do not go completely blind but experience hazy or decreased vision associated with pain in the eye. 

The eye pain is typically worse with eye movements.  Usually the vision loss associated with optic neuritis will resolve after a few weeks but can improve more rapidly if treated with intravenous steroids.  

To prevent recurrent episodes of optic neuritis, patients with MS should be on some form of immunomodulatory therapy that is FDA approved for relapsing multiple sclerosis (for example, interferon therapy, glatiramer acetate, natalizumab, or one of the several pills now approved for MS). To figure out which medicaiton is best for you, consultation with your neurologist or an MS specialist is required.

Finally, not all forms of transient vision loss are due to multiple sclerosis.  If you or your neurologist are not sure what caused your vision loss, consider seeing a neuro-ophthalmologist for further evaluation."

Sincerely,

Benjamin Osborne, MD
Associate Professor
Departments of Neurology and Ophthalmology
Georgetown University Hospital

Here is My Question:
After visiting my GP he suggested to maybe think about using Avonex. My MS is inactive but he said this would slow things down as I have nerve pain and after activity things get worse. He said this medicine works before it gets bad or active. He was talking about injections once a week. Any advice on this?

Answer:
Avonex, similar to the other disease modifying therapies, have been shown to do 3 main things:  1) cut down on the frequency of MS relapses, 2) cut down the number of new lesions on the MRI scans, and 3) reduce the accumulation of disability in the short term (and likely long term).  Based on your question, I have reservations about the use of Avonex (or any disease modifying therapy) to help your "nerve pain" that gets worse after activity.  It sounds to me that you are experiencing the fluctuating symptoms of MS that occur due to old MS scars/damage.  In that case, use of symptomatic (rather then disease modifying) therapies are in order.

For MS to truly be "inactive", we look for no clinical relapses, new MRI activity, or accumulated disability over time.  To answer this question, it requires the expert care of an MS specialist.  I would encourage you to see one of these specialists to answer your question regarding a need to use Avonex (or similar therapy) versus symptomatic management.

Here is a link to help you find an MS specialist/MS team in your area http://www.healthcarejourney.com/just-been-diagnosed-with-ms.html

A. Scott Nielsen MD MMSc
Virginia Mason Multiple Sclerosis Center

Here is My Question:
I started to get tension headaches at the age of 14 yrs old and from the age of 17 yrs I had one every day to this day. Around 14/15 yrs of age I got glandular fever. At age 13 I had a head on collision car accident and broke my upper leg and thumb and spent 2 months in hospital. After that time I struggled with my health, especially my headaches. When I was diagnosed with MS 3 yrs ago it sort of solved the puzzle. I had my first attack 3 yrs ago with my eye. I am 43 yrs old now. My question is can you have MS for years without having an attack???? My neurologist said I have had MS for years. I think I've had it since around 17 yrs of age but I never had a attack, unless my headaches were a MS attack??

Answer:
It is widely recognized now that MS usually exists for years if not decades before a person develops identifiable symptoms. There is even a new descriptive category for patients identified by random MRI scanning for other reasons (often headaches) during the asymptomatic stage, called a 'radiologically isolate syndrome' or RIS.  Most recent studies suggest that about 1/3 of people with RIS will go on to develop clinically evident multiple sclerosis within relatively short follow-up periods. It is quite possible that the percentage of people with RIS who develop MS will increase as they are followed for more than a decade.

An MS diagnosis is frequently predated by unusual though non specific symptoms including headaches, tingling sensations, mental fogginess and fatigue. However, these symptoms are so common in otherwise healthy individuals as to render them of limited diagnostic utility in isolation.

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

Question:
I was recently diagnosed with R/R MS and began taking Tecfidera on 03/31/15. On 04/20/15 I started to notice hair loss which continues each time I wash my hair. I know it is not listed as a side effect however there have been no other changes to my routine or diet other than the Tecfidera. I see numerous comments on the MS Connection website about other MS patients with hair loss attributed to Tecfidera which caused them to stop taking it, including a concerning comment that the hair did not seem to regrow once the drug was stopped. My questions are, have you had other patients report hair loss with Tecfidera? If so did the hair loss subside with time or do you believe that this is a side effect that would typically subside with time? If so how long is reasonable to wait and see? If the hair loss does not subside and I stop the medication, would the hair loss typically regrow or would the hair lost potentially be permanent? Lastly, my second choice for medication was Copaxone, which also does not list hair loss as a side effect however I saw MS Connection comments regarding hair loss with this drug as well. I would hate to stop the Tecfidera only to find the same problem with Copaxone. Do all MS drugs have the potential to cause hair loss or is it perhaps caused by the MS itself? Any advice is greatly appreciated.


Answer:
Hair loss is a common concern expressed by many people when they visit their doctor. Unless your hair is falling off in massive amounts and leaving large patches of bald skin, as occurs after many forms of chemotherapy and called anagenic effluvium, you are likely experiencing a condition called Telogen Effluvium. To understand this better you need to know a little about the normal hair growth cycle. 

In most people 80-90 % of hair follicles are in an active growth stage (called the anagenic stage) and the rest are in a resting stage (called the Telogen phase) getting ready to fall off and make way for new growth. Any number of events including post emotional stressors, diet changes, hormonal changes, post partum, nutrient deficiencies, medical conditions (esp.  thyroid disorders) and many medications can push a greater number of hair follicles suddenly into the Telogen phase. Interestingly, the hair does not immediately fall out when this occurs; instead, the hair follicle stops growing and involutes over 2 to 4 months before it falls out.  The loss of hair or hair thinning is usually complete within 6 to 9 months after the condition that caused you to experience Telogen Effluvium. As soon as a hair falls off the new hair follicle begins to grow, but it takes months before this becomes noticeable. 

People with telogen effluvium will notice more hair on their brush and their pillow in the morning and the hair. A typical person will lose about 100 hairs per day whereas a person with telogen effluvium will lose 300-500 hairs a day. The hairs that you collect will have the typical appearance of a hair that has gone through the telogen phase. Most noticeable, is the small white hub at the end of the hair that was attached to the scalp. 

It is most important to understand that Telogen Effluvium is almost always a temporary condition though it takes time to recover.

Let’s return now to your question. You started Tecfidera on 3/31/15 and began to notice hair loss 20 days later. Telogenic Effluvium that begins this rapidly would also be expected to recover within 6 months, often without even stopping the medication. This is certainly the case with Teriflunomide. It is more typical for the hair loss to only become noticeable 2-4 months after the onset of the causative event, and then continue unless the offending condition is reversed or stopped.

It is impossible for me to determine if there is a causal link between the initiation of treatment with Tecfidera and hair thinning. We can only determine cause and effect from  placebo controlled trials and this was not an observed side effect attributable to Tecfidera in clinical trials. If your hair loss is severe and bothersome to you then you have a number of choices. First, ask your doctor if there are other potential causes of hair loss. For instance, antidepressants or recent stressors are common causes. If there no other identifiable causes you have some choices to make:

1. If your doctor thinks you are a good candidate for minoxidil, you can continue on Tecfidera, and take minoxidil for the next 6 months to stimulate hair growth.

2. You can stop Tecfidera and take another medication for your MS but don’t expect the hair loss to stop until it has run it’s course.

I hope this helps.

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

Question:
I have had MS for ten years. Is the burning and prickly feeling on bottom of my feet a relapse or is it normal for someone with MS and something that I need to get used to?

Answer:
Burning and prickling sensation on the bottom of the feet is very common in MS. This is not a relapse and can wax and wane during the day. If the sensation is too annoying, especially if it interferes with sleep, talk to your doctor about trying a medication like gabapentin or Lyrica, among many, to block these symptoms. The medications we use are generally well tolerated in most people are not addictive.

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

Here is My Question:
I am a 53 year old female. I am having intermittent numbness, tingling on my face, hands and feet, sometimes it would be right side, sometimes left. Sometimes I would feet heaviness in my arm, then it would go away. It's not sudden but a gradual sensation. I went to the ER twice. My MRI with contrast showed that I have chronic eschemic small vessels changes. They observed me overnight and put me on aspirin. What should I do now, what specialist I need to see?

Answer:
Great question. We see people like you in clinic every day of the week. Intermittent, multifocal paresthesias (“tingling”) and numbness are a common complaint associated with a long list of diagnostic possibilities. In patients over the age of 50 at onset of symptoms, MS is a less common cause of this symptom. You need to see a neurologist who will take a detailed history and examination followed by a thorough review of your MRI. Ask your primary care doctor for a referral and good luck.

Revere Kinkel MD
Director of the UCSD Multiple Sclerosis Program

Here is My Question:
I want to start by saying that I know I am very blessed to be dealing with the relatively minor issues that I do. I've done a little research, trying to learn a little about MS so I wouldn't have to ask silly questions, but it seems the more I read the less I felt like I really knew about the topic.

I am a 55 year old male and was diagnosed with primary progressive MS about 3 years ago. Symptoms like leg and torso numbness, burning pain in leg and torso, spasticity, fatigue, and pain associated with unrelated back issues as well as some cognitive and bladder issues have been gradually getting worse. 

The burning in my leg is pretty much constant now and too intense to tolerate at times, and the other symptoms have worsened also making walking much more difficult and range very limited. And sleeping...

My understanding is that my treatment options are limited to treating each symptom, and it seems to me at least that to this point that has had limited success. So anyway, the question I guess is really one of expectations. I just need to know...are the gradually worsening symptoms what I should be expecting and something I just need to deal with somehow? Is there any point to whining to my neurologist again? 

Answer:
I'm sorry to hear about your struggles with the progressive nature of your MS.  It is telling that you refer to your problems as "relatively minor issues."  I applaud you on your ability to take perspective and notice where things are good in respect to your MS and functional status.  Some individuals (regardless of whether they have MS) always focus on the negatives, which in my experience as a physician working with patients dealing with a chronic illness, is very disabling by that fact alone.

You are correct in that the current state of MS therapeutics is extremely limited for reparative strategies due to the underlying damage to the nervous system caused by MS.  There are some interesting experimental therapeutics currently being investigated in phase I and II clinical trials right now (anti-lingo and rhIgM22 antibodies), and we patiently wait on what we learn about these biologics.  You are also correct that the progressive phase of MS is primarily dealt with in terms of treating symptoms.  Based on the nature of the symptoms, strategies involving symptomatic pharmaceuticals, cognitive rehabilitation, and physical medicine and rehabilitation measures can be used (among others).  I would counsel you to always bring up your symptoms and concerns with your neurologist.  While it is important to recognize the limitations to medicine and the state of treatment for MS as it currently stands (which it appears you do), it is important to keep in mind that there are symptomatic therapeutic approaches that could be very beneficial to you.  As a MS neurologist, I must admit that I can't read my patient's mind, and I find it very difficult to know how to help unless they speak up.  We genuinely want to help, and you shouldn't feel that you are whining (your word).  Please see this communication from a patient perspective on this topic:  http://www.healthcarejourney.com/patient-blog/communication.

Many times, the physiatrist (a doctor who focuses of rehabilitation medicine) will play a lead role in the progressive symptomatic treatment of patients with MS in concert with the neurologist.  Most comprehensive MS centers have these physician subspecialists that can be integral in your treatment team.

Hope this helps,

A. Scott Nielsen, MD MMSc
Virgina Mason Multiple Sclerosis Clinic