Here is My Question:
I have suffered a severe attack of shingles and have just been prescribed 10 mg Nortriptytline. How long will this take to be effective?

Answer:
Answering your question on the treatment of shingles requires separating the treatment and management into two phases:

1. Acute Shingles refers to the classic rash in a single dermatome. This rash is usually preceded by itching or burning which continues after the rash subsides. Treatment of the acute rash, especially if started within 72 hours, with lotions (calamine lotion), antivirals (eg acyclovir, valcyclovir etc) and oral steroids can shorten the duration of symptoms and lessen the chance of developing post herpetic neuralgia (i.e. the persistent pain after the rash has disappeared that can last for months or even years). Treatment is more important for people over 50 and people considered immunosuppressed. People are often hospitalized for rashes over many dermatomes, rashes involving the region around the eye, for infected rashes or for involvement of other organ systems.

2. Post herpetic neuralgia is the pain that continues after the acute rash subsides. This pain can be debilitating and is treated with both topical agents ( capsaisin cream or lidocaine patches), anticonvulsant class medications (gabapentin, pregabalin, phenytoin and carbamezipine) and low dose tricylics (amitriptyline and nortriptyline); often many of these different treatments are required in combination to manage the pain: a common combination is the use of lidocaine patches applied for 12 hours with gabapentin during the day and low dose nortriptyline at bedtime. 

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

Question:
I have completed my 11th day of treatment of Cholestyramine. Does this remove all of the Aubagio and is it now safe to re-start Gilenya? Thank you.

​Answer:
You are correct. The Aubagio is entirely removed from your system after 11 days of cholestyramine.

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

Question:
I am experiencing a very frustrating tingling in my left foot, up to the left knee that is almost constant, for the last 4 months, and it is literally driving me crazy. I am taking Tecfidera and nothing is getting better. I used to love to run and walk-but now these things are painful. This is causing me to become very anxious and depressed. My last MRI was 6 months ago and there was no active lesions at that time. My physician told me that there is no treatment for these symptoms because they are not severe and they refuse to give me steroids! I am desperate and don't understand why they are not treating this like a relapse. I have not had a relapse since 2002 and I really believe this needs to be treated. I feel so helpless and alone. Any advice is greatly appreciated. Thank you!

Answer:
The tingling in your left foot may not represent a relapse, but it certainly requires treatment. We use many different medications to help manage these spontaneously generated sensations, called paresthesias. Some of the more common medications include gabapentin, pregabablin and carbamezipine. Please talk to your doctor about a trial of one of these medications.

You also mention a number of feelings and emotions in your message that indicate to me a significant amount of distress, if not depression. This level of distress can significant increase your symptoms, interfere with your sleep and worsen your daytime level of fatigue and exhaustion. The cumulative effect of this response of your mind to this stress over time dramatically increases your MS related symptoms and creates a viscous cycle that must be broken for effective management.

Please talk to your doctor about these feelings you are having as well. We and others have found that mindfulness training and other forms of relaxation/meditation are particularly effective ways to help control this maladaptive response to stress and gain an element of control over your symptoms. But remember, techniques such as Mindfulness or Meditation require daily practice to be effective. It is also possible that you may require more interactive counseling or even medication for this stress, but not as a primary form of treatment unless your doctors feel you are experiencing a significant level of major depression or anxiety. 

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:
Can Copaxone make your blood thicken?

Answer:
Copaxone can not make your blood thicken

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

Question:
Is a shingles shot OK?

Answer:
Here are a few previously written blogs about shingles...

http://www.healthcarejourney.com/q--a-for-virtual-ms-center/should-i-get-a-shingles-vaccine-if-i-have-multiple-sclerosis

http://www.healthcarejourney.com/q--a-for-virtual-ms-center/which-vaccines-are-safe-for-people-with-ms

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

Question:
I was diagnosed with MS in 1985. I was not told back then how important exercise was, but I did have young children who kept me active. I am having a problem with foot drop and my biggest problem is that I can't stand for a long period of time because my knees hyper - extend. What can be done for this? I have been to physical therapists but they haven't really done anything but stretch out my hamstrings and have me pedal for a few minutes on a recumbent bicycle. Is there a certain kind of physical therapist I should be seeing to help me with this problem?

Answer:
​Knee hyperextention associated with a foot drop is very common with MS. While it is important to work on controlling posture and strengthening various muscle groups, these remedies are often minimally effective once the leg gets too weak. The best solution is probably a three pronged approach:

1. First you need an Ankle foot orthotic (AFO) if you do not already have one; we generally prefer the carbon fiber dynamic AFOs but some people require more support than these offer
2. You probably require a hinged knee brace like a Swedish knee cage to prevent overextension of the knee ; you may be able to skip this step if you are not experiencing much knee pain
3. If your hip flexors are too weak to lift your leg forward, you may require a Knee flexor assist orthosis (KFAO)

Find a physical therapist who is a neurological specialist and a good orthotic specialist to work with to find an effective solution.

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:
​Daylight savings time is a killer for me. I have had MS for 5 years and struggled with it getting dark early even before I had MS but now things are getting even worse.  Would light therapy work for me? My doctor has me taking vitamin D so would light therapy give me even more vitamin D? I am getting depressed just thinking about it getting dark early.


Answer:
The issue you seem to be describing is consistent with seasonal affective disorder which is aggravated by the shortening of light duration this time of year, and less so about multiple sclerosis or vitamin D. It's possible that a SAD light box may be helpful. I'd suggest reading here http://www.mayoclinic.org/diseases-conditions/seasonal-affective-disorder/in-depth/seasonal-affective-disorder-treatment/art-20048298?pg=1

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

Question:
​Is there an effective alternative medication for Ampyra? My copay is a hefty $580 a month which is a budget buster for us. The ampyra seems to help with my mobility so really hate giving it up.

Answer:
Ampyra is branded 4 aminopyridine. We used to get compounding pharmacies to provide 4 aminopyridine to our patients before Ampyra was approved by the FDA. Insurance will not cover the compounded drug but the price used to be reasonable. Many neurologists will no longer prescribe compounded 4 aminopyridine for patients but you could ask your doctor. Their reasons are multiple:

1. There is no strict oversight of the compounded product for purity, shelf life etc. This is why I always used the same compounding pharmacy years ago when I used the compounded product.
2. 4 aminopyridine is somewhat unstable because of its chemical properties.
3. There is a history of batch to batch differences with the compounded product; # 3 and 4 can lead to increased side effects like seizures because of people adjusting doses upwards to gain benefits
4. There are potential medical legal issues of prescribing compounded 4 aminopyridine now that Ampyra is available.

If you do use the compounded product, do not take more than 10 mg twice a day regardless of whether you achieve the same benefit as you did with Ampyra.

Perhaps your best move is to call Acorda, the company that makes Ampyra and find out if they have a drug assistance program to help you with the cost.

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 a previously written blog:

​http://www.healthcarejourney.com/physician-blog/dysphagia-in-multiple-sclerosis

Here is My Question:
Is it possible to mistake a gastric bypass surgery with MS? Per this website to confirm MS MRI or symptom should be studied together....This means the symptom of Gastric bypass might be mistaken by MS symptom. There are many sources in internet confirming that as an example.

Answer:
Bariatric surgery can lead to a variety of nutritional deficiencies that in turn can cause a number of central and peripheral nervous system syndromes. These complications of bariatric surgery have been known for at least 2 decades. Most good neurologists screen for these deficiency states and consider them in the history of patients with bariatric surgery. The most common are copper and vitamin B12 deficiency.

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 on Tysabri for 2 relapse free years. Now I want to try for another baby. I was advised to gradually lengthen the intervals between the infusions. So my last three infusions were every 8 weeks. Are there any studies suggesting this approach will prevent rebound activity?


Answer:
This is one of many unproven approaches that neurologists use to avoid rebound during pregnancy after discontinuation of Tysabri:  The idea is to continue Tysabri during pregnancy, administered less frequently, but avoid administering in the 3rd trimester when the maximum protective effects of pregnancy on your MS takes hold. Remember, Tysabri will not cross the placenta during the first trimester of pregnancy. Once the the baby is delivered, tysabri is restarted. The rationale is that it usually takes more than 3 to 6 months off of tysabri for disease activity to return and pregnancy itself increasingly reduces the risk of relapse during the second and especially the third trimester.

It is important to note that not all people have an equal chance of relapsing after stopping Tysabri. Relapses after stopping Tysabri are more common in people with frequent relapses (more than 1 a year) or frequent MRI activity before starting Tysabri. Overall, about 1/3 of patients experience a relapse after stopping Tysabri and about 10 % or less experience rebound (an increase in disease activity compared to their activity before starting Tysabri).  This disease activity can usually be controlled with steroid treatments but there are some potential risks of steroids during pregnancy that must be balanced against the risk of Tysabri.

There are now several observational studies of exposure to Tysabri during pregnancy and no evidence of an increased risk of fetal malformation or other problems. There is some evidence that exposure to Tysabri during the third trimester increasing the risk of newborns experiencing low platelet counts and anemia and this must be understood by your obstetrician.

I hope this information helps. We (you) often have to make decisions in medicine in the absence of the ideal amount of information. Go over all this information with your doctor to make sure you are comfortable with the choice you make. If you are not in a hurry to get pregnant, there are several other choices to consider that involve switching to another DMT. Depending on your circumstances, switching to Rituximab or Ocrelizumab prior to pregnancy is one such choice. This could be administered before pregnancy with benefits lasting through pregnancy. Generally, there is no information that switching to any other DMTs after stopping Tysabri prevents rebound and most of these other DMTs (except interferons and copaxone) are small molecules that can easily cross the placenta in the first trimester and should be avoided.

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 DMD that doesn't directly impact immune system? I had been on Aubagio for 2 yrs. and developed a rare form of Eosinophilia (shown in blood and in various tissue biopsy). 

I changed to Copaxone and did fine for about 60 days. After that time, all injections caused (within minutes to hours) severe chills, then a high fever exceeding 102-103 for 6-8 hours. The next several days I had a low grade fever and flu like symptoms. I tend to have either a UTI or Chronic Sinusitis at all times. Looking for something that doesn't cause low immune system issues to become worse with use. 

Answer:
There are many causes of eosinophilia but your history makes me think of eosinophilic chronic sinusitis or another form of hyper eosinophilic syndrome. If the eosinophilia and sinusitis is chronic and persists after stopping the drugs then your responses are not caused by the drugs. You need to see an immunologist and allergist.

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:
I was involved in a clinical trial for Idebenone for PPMS for four years, and have just completed it. I did take the real Idebenone for at least one year, and possibly for three years during the double-blind placebo trial. Now that I've stopped taking the Idebenone, I'm noticing more difficulty with my hands and memory. Could the fact that I am no longer taking the pills do these things? Thanks.

Answer:
It is impossible to know if your symptoms are related to stopping the idebenone, are a consequence of stopping your participation in a clinical trial or are just a natural consequence of your MS. Make sure you contact the study personnel with these concerns. If you are not able to go on Idebenone as part of an extension trial you may want to start taking Coenzyme Q10. Ask your doctor about this.
Hope you feel better.

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:
Can I get lip fillers if I am currently on Tysabri for my MS? 

What would be the side effects or make it different than for someone who is not? I have heard the filler would not last long as opposed to someone who does not have MS. Please clarify. Thank you 

Answer:
Lip fillers are synthetic collagen or hyaluronic acid products. Theoretically, these products could activate the immune system but in practice I have not observed this yet or heard of it happening. Most reactions are local (at the injection site) or hypersensitivity reactions (an allergic response).  This being said, I doubt there is enough prospective experience of dermal enhancement procedures in patients with immune medicated diseases to be able answer your question with confidence at this time.

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

#plasticsurgery

Here is My Question:
I'm 38 years old. Diagnosed with ms in 2003, put on Avonex for 7 years (no progression on MRi's, no symptomsfpr those 7 years) stopped taking medicine in 2010, still continued with no symptoms and brain/spine MRi's had no change... No new lesions/symptoms ect. Had a relapse in December 2015 pins and needles on left side face hand. Dr suggests Tysabri? I'm jcv negative. What do you think about this medicine vs aubagio? I did have repeat MRi's sept 2016 and had a new enhanced lesion didn't feel any symptoms from it but the stress since they told me has pretty much caused me to feel horrible from worry. Thank you, debbie Boston mass

Answer:
Hi Debbie from Boston,

If I am understanding you correctly, you did fine on Avonex for 7 years and then for 5 years after stopping Avonex before having a relatively minor relapse (sensory symptoms only with 1 new lesion over 13 years).
​
My suggestion would be to restart interferon (Avonex or Plegridy which given ever 2 weeks)  if you were able to tolerate Avonex previously. If you hated avonex, Aubagio is a good choice. It’s a daily pill with few side effects or risks and patients tend to prefer it over injectable medication. Discuss it with your doctor. 

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