Ask the Experts: Treatment
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Q: I am Secondary-Progressive MS; I was on Novantrone very successfully, but reached my dose limit 2 plus years ago and I have an adverse reation to the betaferons. An MS clinic suggests Cellcept - I am not sold - all I read is 50/50 and have not read anything about its use specifically
with MS - What are your thoughts? Where can I learn more about the pros and cons of Cellcept and MS treatment?
A: Unfortunately there is no currently approved treatment for Secondary/Progressive MS except for Mitroxantrone, and you have apparently recieved the full allowed dose.Several drugs are at times tried including Rituximab, but unless there is evidence of inflammatory activity, as defined by a positive gadolinium enhancement, MRI treatment would usually be directed to helping to manage the effects of the disease rather than treat the condition per se.
If you are uncertain, a second opinion at an MS center is usually a good idea. I would suggest talking with your neurologist and asking for a referral suggestion for this purpose given the severity of possible side effects of all the common alternatives ( Cellcept, IVIG, Cytoxan, Daclizumab, Natalizumab.) Newer oral agents including Cladribine and Fingolimod are likely to be approved this year, but have only been evaluated for Relapsing/Remitting MS.
Q: I am interested in taking the probiotic flora more for better digestion and overall health. Are you aware of any adverse side effects of taking them?
A: I cannot tell from the labeling what the nature of the bacteria present in this product are. In general, it is unlikely to have any effect on MS, but there are no studies or available references on the labeling material to help make a judgment. In general, it is not likely to be a useful addition.
Q: I started Copaxone at the beginning of January this year. After all this time, I am still having symptoms of being so cold I shake. Is this part of MS or could it be side effects of the Copaxone?
A: Fever and chills can be a rare side effect of Copaxone. If your neurologist agrees, you might consider stopping the drugs for 3 or 4 days to see if the chills disappear. You may then be required to choose between this side effect, or an alternate treatment plan.
Q: My neurologist, who I have a lot of respect for, has suggested that I add to my Copaxone treatment a drug that has not been tested for MS. I do not like taking drugs and really do not want to start a new one. What are your thoughts on Cellcept as a viable treatment plan to compliment Copaxone. I am beginning my research on the drug and at this time I don't think I can live with the side effects of the drug; they seem overwhelming to me.
A: Much depends on your attitude toward the proposed drug and your clinical state. It may be that your neurologist feels there is no other reasonable alternative to an untried medication in your set of circumstances. It seems that he (she) was forthright about its lack of approved indication, hence I would suggest you ask for the reasoning behind the suggestion.
I applaud your efforts to research the drug, but absent a medical/neurologic background, you may find as many new questions as answers. Perhaps a consultation at an MS center would be helpful. It may turn out that the drug in question is already being studied, but data has not been published. It is likely that the information can best be gathered by a discussion with your neurologist and if that is incomplete or not reassuring, further help should be sought.
Q: I have MS since 1997. For the past year or two, I have leg spasticity on maximum medical therapy. I was told about Botox use. Would Botox help me to walk easier and have less stiffness in my legs?
A: It all depends on the pattern of spasticity. Botox is good for specific problems related to spasticity, such as related pain, joint mis-alignment, facilitation of the use of orthotics, with scissoring of the lower limbs making hygiene and dressing difficult, dystonic positioning of one or the other or both feet, etc., but it is not in my experience, good for generalized increase in tone in the legs to make walking easier. It is expensive and cannot be relied on to last more than three months (although it might last 1 or 2 months longer). It is important to optimize medical therapy- backing the total dose of Baclofen into the waking day and using Tizanidine in the pm and at bedtime.
Q: I was diagnosed with MS about 16years ago. I have done very well, mostly having symptoms of optic neuritis. Recently, I started with numbness in my feet and legs up to my waist. I saw the Physician's Assistant at my neurologist's office. I had bloodwork and a urine done. I did have a Urinary Tract Infection. For this reason he said I could not go on the Solumedrol. Why is this?
A: It is generally unwise to administer cortisone derivatives to someone with an active infection for fear of reducing resistance which may lead to spreading of the infection and interference with the effects of antibiotics. That may have been the reasoning behind the decision to withhold the treatment at least until the infection was controlled. Another concern is that bladder infections commonly increasing underlying MS symptoms which may resolve when the infection is controlled.
It would be reasonable and useful for you to ask your neurologist what the reasoning was. Your new episode (if it was the first of this nature) may suggest involvement of the spinal cord. That might lead to a change in your treatment as well.
I hope this is useful information, and I urge you to call your neurologist for further discussion.
Q: I am a 37 year old African American female recently diagnosed with MS. Saw a local neurologist who after MRI and spinal tap said confirmed MS and wanted to start meds. Got second opinion at Mayo and Dr. doesn't want to start meds now. Wants to wait and repeat MRI in a year. This scares me that I have 2 very different opinions and want to know am I doing more damage by "waiting for an attack" or should I go ahead and start meds. I only have some slight numbness on my right side, fatigue and neck stiffness. All of these except neck issues have been there for 4 to 5 years. Light spots shown on brain and thoracic and spinal tap showed bands. I don't know what to do - get a 3rd opinion?
A: This is hard on you. You find yourself in a position, with regard to MS, that is right in the middle of an ongoing controversy. I'll explain what the problem is.
There is a category of MS called benign MS. Altogether, maybe 20-30% of MS patients have this type of MS, which never causes much trouble, the symptoms remain the same for many years, and the MRI scans show no change, However there is no good way at present to identify these patients. They look the same as the others, who definitely do need treatment. The Mayo clinic opinion, shared by some neurologists but certainly not all, is that you can wait and see; if the scans look worse, or there are new symptoms, then you start treatment. The other view, which your original neurologist has, is that you can't tell who is benign and who isn't, and the safer way to go is to start treatment right away. If that kind of approach is being followed, or course, 20-30% of the people are being treated with treatments they do not actually need.
Also the treatments that are now used have their problems. You probably know this. All of them are injectable. The side effects are not dangerous but they can be unpleasant. And the treatments are not time-limited, that is you're on forever.
If you have any sense that you are worse than you were 5 years ago, you should start treatment. If you think you are exactly the same as you were---no new symptoms that you attribute to MS, then you can probably wait (Mayo style). I wouldn't wait a year, however, I'd get a scan in six months. If you do start, then my own choice would be glatirimir (Copaxone).
Good luck. It's a complicated situation.
Q: I have been hearing and reading that Copaxone is not an effective therapy in the management and treatment of RRMS. Can you comment on this? Thank you.
A: Copaxone and the other primary drugs (so-called disease modifying agents) are all roughly equally effective. Overall, the frequency of relapses is reduced by 30-50% and the severity is reduced by about 30% (of relapses).
Sadly, there is no cure yet for MS, and a substantial number of new drugs are in the testing pipeline, some of which can be taken in pill or capsule form. It is important to take one of the DMA's as soon as possible to delay the development of more serious complications of the disease. This position is strongly supported both by the Multiple Sclerosis Society and by the American Academy of Neurology.
You should discuss your concerns with your neurologist who can provide you with substantial amounts of information on the topic. Certainly controversy exists, and the degree of effectiveness has been challenged by at least one collection and review of several studies, but the overwhelming opinion of physicians support early treatment with a DMA including copaxone.
Q: I was diagnosed with MS in May 2008. The MRI showed what could have been lesions, but wasn't clear. The spinal tap showed some banding. I was started on Avonex at the recommendation of my neurologist for Relapsing/Remitting MS for which I have noticed no significant improvement. I still have right leg weakness and dragging at times. I am also being treated for sarcoid in the right eye. I will be going to an MS specialist in February to get a second opinion and to make sure if it truly is MS. Since I have not noticed any change since using the Avonex, is it wise for me to discontinue the use of the Avonex until the final findings of the MS specialist?
A: If your local neurologist has confirmed a diagnosis of relapsing MS and has initiated treatment based on your neurological examination, MRI, and spinal fluid results, I would continue with that pending your meeting with the staff at the MS Center in February. If the diagnosis is correct, you are ahead of the game and should be on some form of treatment. It would be up to the treatment team at the MS Center to continue with the interferon, to add additional medication, or to switch to something else. The goals of treatment are largely to reduce the number of new relapses or attacks, to cut down on the chance for future disability, and to limit new change on the MRI. In general, most of the available medications do not reliably get rid of the symptoms or disability you are already experiencing. The purpose of the interferon is to ward off new problems and not necessarily to reduce the symptoms you already have. Hang in there and good luck with your next appointment!
Q: My doctor would like to treat me with three treatments of Novantrone-once a month for three months. I am 23 years old and want a family. My question is:
What are the studies out there and what are the statistics of the possibility of the Novantrone causing infertility?
A: The short answer is yes, and it has also been associated with heart problems and even in some rare instances with leukemia. However, it is likely that your doctor feels your MS condition is fairly active and may wish to give you a better chance on having less long term disability. The initiation of treatment for MS with Novantrone is more common in Europe, and it is viewed by some as more powerful agent given in a smaller dose than the usual amount used to treat more progressive MS followed by more standard Disease Modifying Agents (DMA'S). If you are uncomfortable with the approach and/or the risks, and second opinion in an MS center might be helpful. You could discuss this idea with your neurologist.
Q: I recently developed a new active lesion on my lower spine. I have now developed terrible pain on the bottom of my feet. I have tried Neurotin, but had an allergic reaction. Tried Lyrica, and had no luck with that. I am currently taking Vicoden, every four hours, and this is the only thing that helps. Is there something else that is used for this type of pain?
A: There are other medications which may be helpful including carbamazepine and steroids. Some of the other antiepileptic medications may also be useful but generally are not as effective. If these measures fail, although the scientific rationale is poor, lidoderm patches occasional are quite helpful. I would suggest you review some of these possibilities with you neurologist and if not effective request an opinion from a pain center as well.
Q: I have been diagnosed with Primary Progressive MS (PPMS).
Why are there no treatments for PPMS like there are for Relapsing-Remitting MS or even Secondary Progressive MS? It also seems that there is limited information about PPMS.
A: There are two components to ms---the inflammation phase, and the nerve fiber damage phase. Most of what is known about MS, and most of the available treatments, pertain to the inflammation phase. Unfortunately in PPMS that phase is very short, or never exists at all, and one is left with nerve fiber damage, which may be ongoing and slowly cause a loss of functional abilities.
But some things are known, and various trials have been ongoing for some years----a trial with copaxone seemed to have some slight promise, and one with retuximab was recently completed. This is an area where stem cell research is liable to have some relevance.
So keep up your hopes.
Q: I just returned from a doctor's appointment with my mothers neurologist. She is 61 years old and has Secondary Progressive MS.
While she exhibits the usual mobility impairment, her cognitive function has been severely impaired. I was surprised to hear that there's nothing that can be done for her besides over the counter drugs. Is this true? Are there any studies being performed to address this stage of the disease?
A: There is considerable research being done to address the needs of people with progressive forms of MS. Unfortunately, at this time, there is no "standard" treatment regimen with an attached guarantee. There are a number of options to consider, however, including immunosuppressive or chemotherapy, but recommendations must be made on a individual basis. As with other treatment decisions in MS, we must balance the ongoing risk of the disease against the risk and the benefit of every medication we are considering.
In addition, there is a Phase III trial (MBP8298) recruiting patients with secondary progressive MS who are not currently taking a disease modifying treatment. For further information about this, you can search the http://www.clinicaltrials.gov/ website or call our research coordinator at 617-789-3171.
In addition to disease modifying treatment, there are a number of avenues for symptom management, including non-pharmacologic treatments (physical therapy, etc) as well as medications. This includes agents for spasticity, mobility, bladder impairment, and to some degree, cognitive impairment. An approach that stresses a comprehensive program of care is generally the best way to proceed.
Q: I am a 53 year old female diagnosed with MS in 2005. Over the last few months, I have been having spasms in the back of my legs-it feels tight like a rubber band and is very painful. Sometimes bending my leg at the knee helps; but the most concerning symptom is the gripping pain in my right hip. The only thing that helps is to lie down, or sometimes sitting helps. Does this sound like a "normal" MS symptom?
A: The answer depends on the nature of your MS. Your problem sounds more like a typical middle age back disorder, but MS can produce these kinds of symptoms if there is a substantial degree of spasticity in your lower back and legs because of spinal cord involvement. Your neurologist is likely to be able to separate the two issues.
Q: I've been diagnosed with Relapsing-Remitting MS since 1999, after a knee injury that ended with numbness in the leg that went away after a month. The diagnosis was made after the neurologist learned that I had optic neuritis in 1982 and one other episode of hands/feet tingling in 1983, with no MS diagnosis made at those times. I have had no visible-to-me exacerbations since my diagnosis, although annual MRIs do occasionally show new lesions, none active at time of MRI. I am taking Copaxone since 2005. I have 2 questions: the neurologist told me that optic neuritis is a definite sign of MS. Is this true? And, in the last year or so, I have been experiencing frequent leg & foot cramping ("charlie horse") , mostly lying down at night. Is this a symptom?
A: By definition you have benign MS—that's good news. If copaxone is causing no side effects—it does occasionally cause skin lumps and bumps—then that's a good medicine for you.
Optic neuritis, in the great majority of instances, is one of the manifestations of MS. I'm sure it is in your case. You can find people who have only optic neuritis, nothing else, then there could be an arguments if that is MS or not.
The cramping by itself may not mean very much. I'd suggest some stretching exercises before going to bed.
Q: I was diagnosed with MS six months ago and I'm reading my most recent MRI results. I had chemotherapy for the first three months, and Avonex for the past three months. The MRI showed that I have one non-enhancing FLAIR hyperintense focus in the right frontal centrum semiovale in the vertex, which is new compared to the MRI had three months ago. In addition, the is new enhancement in the left occipital subcortical white matter lesion. So here are my 2 questions: 1) In layman's terms, what are these two parts of the brain and what do they do, and 2) Since I have new lesions, does this mean the Avonex is not working?
A: Most MS lesions in the brain are actually quite small and many do not result in symptoms particular to their locations in the brain. This is very likely the case with the lesions you describe in the front and occipital white matter. Our assumption is that much of the time it is the accumulation of these lesions in the brain which contribute to disability over time. This is less true in the brainstem and in the spinal cord, where even a small lesion is more likely to result in location-specific symptoms.
Your second question relates to the treatment effect of your interferon. All of the disease modifying drugs we use in MS have an induction period. This is the time it takes for a full treatment effect to be realized based on clinical trial data, and although this is probably variable, we assume that in most patients, the induction period is somewhere between two and four months for patients taking interferon. Therefore, it is really too early in your course to judge the full effect of this treatment.
More importantly, it is important to say that we judge treatment effect and make decisions on treatment based not only on the MRI test, but also on your clinical history of MS flares or relapses, your history of progression, and the findings on your neurological examination. Looking at your relapse history, examination, and MRI findings, we have a composite view of how you are doing and whether your treatment should be changed or adjusted at any point in time. I would assume that based on your requirement for chemotherapy early in your course, your disease is active. The new lesions on MRI must be interpreted in that context, and I would encourage you to discuss this further with your neurologist and treatment team. Good luck with this as you move forward !
Q: Vitamin D supplements seem to make some sense to me—it's something we need anyway and living in New England with its long winters and the need for sunscreens in the summer, we probably aren't getting enough from sunlight.
How is it suggested that a person start taking Vit D?
Are there any at least somewhat conclusive studies about its use?
Would it matter that I am on Copaxone?
Would I need to inform my neurologist with an interim phone call or could I wait until my next visit?
A: Recent data suggests that many Americans are deficient in vitamin D and starting a daily dose of 400 mg is appropriate in most adults excluding those with certain metabolic disorders and kidney stone formers. It is an especially useful idea in post menopausal women, and in people who because of physical limitations have reduced exercise options. You can certainly wait for your next appointment to tell your neurologist, but your primary physician may suggest other tests depending on your size, weight and age. It will have no effect on your Copaxone use.
Q: I have MS, and I keep getting very painful bouts of Trigeminal Neuralgia. Thankfully they only last for approx. 3 days. Then I may not have it again for anywhere from 1-4 weeks. Is there something I can take to help with the pain?
A: It has long been recognized that trigeminal neuralgia can be a symptom of MS, although it is relatively uncommon. Approximately 2% of people with trigeminal neuralgia have MS, and only 1-2% of individuals with MS will develop trigeminal neuralgia. The nature of the pain does not differ from the idiopathic form seen in people without MS, except it is slightly more likely to be bilateral (on either side of the face) in MS. The most effective treatments are anti-convulsants (medications used to prevent seizures), and those most commonly used are carbamazepine (Tegretol), valproate (Depakote), or lamotrigine (Lamictil), although others may be effective as well. If these medications are not effective enough or not well tolerated because of side effects, other avenues of treatment include surgical procedures, such as radiofrequency rhizotomy or radiosurgery with a gamma knife procedure. Your neurologist should be able to confirm the diagnosis of trigeminal neuralgia and help you with a choice of treatment. As you well know, this can be a terrible pain, but fortunately there is a very good chance that treatment will help you get rid of it. Good luck!
Q: My husband was diagnosed with MS almost nine years ago and has been on Avonex. He just experienced his first real exacerbation, which has rendered his entire right side without strength. His neurologist recommended a three-day course of IV steroids, which actually seemed to worsen the symptoms. This began Christmas Eve morning and has progressively worsened. Since we are new to the world of researching treatments, is there anything that has worked for others who have not responded favorably to the steroids? Any suggestions or assistance that you can provide would be most appreciated. We are trying to stay optimistic; however it is becoming increasingly more difficult with no improvement at all.
A: In general, the degree of a person's recovery from any attack is unpredictable, but it is not uncommon to see recovery continue for 5 or 6 months; hence it is far to early to despair about possibilities.
I would suggest reviewing this with your neurologist. As far as medications that reverse the effects of an MS attack, there is little to offer. By and large treatments to date are directed to lowering the chance of an attack or reducing its severity but these are given in advance, much as the Avonex treatment is designed to do. It might be reasonable to ask your neurologist to arrange for an antibody test to determine whether Avonex is still as effective as hoped for.
Q: I've been diagnosed with relapsing-remitting MS; however, no neurologist has ever answered my question. I want to know exactly when these disease-modifying drugs, such as Copaxone and Rebif, actually kick in? I was on Copaxone for almost 12 months and stopped it because of site reactions, only to find out, through a nurse, that it didn't even begin to kick in until the 10th month. I would have liked to have known that when I started it! Now I'm considering Rebif since it's a 3-day-a-week injection vs. every day. I'd like to know when the actual disease-modifying benefit begins.
A: The best data suggest that both drugs start to have an effect very early on. The issue with Copaxone is that its effect on MRI is seen later than the MRI effect of the interferons, but the clinical effects occur much sooner. There is probably little difference between the onset of effect, but it is not possible to quantify it further. In terms of the derivative measurements, such as protein induction, those are immediate. It is important to remember that none of the current agents cure MS. They reduce the frequency of attacks and may, over the long run, result in less overall disability. They are clearly an important advance, but there is a long way to go.
Q: Could a patient with Primary Progressive MS, who appeared to be benefiting from Copaxone, start having MS symptoms (tingling/numbness) a few weeks after stopping Copaxone?
A: There is little data on the effect on Copaxone on primary progressive MS; most neurologists think it is probably not effective, but the question is not answered. It would seem unlikely that a progression of MS (which is a progressive disorder) occurring in such a short time is related to the absence of Copaxone, but again the jury is out.
Q: Does IVF (in vitro fertilization) affect Multiple Sclerosis relapse rate? Is it better to get pregnant naturally (and stay off medication longer) or get an IVF.
A: There is a very limited amount of data on the subject of infertility drugs and their effect on multiple sclerosis. One very small study of six women with MS, published in 2006, suggested that the use of LHRH agonists, hormones sometimes used during IVF, increased relapse rate. Although there is some information on this topic, both in women and in animal models, the numbers are too small to draw any clear conclusions. The data is not strong enough to suggest a blanket recommendation to avoid IVF if you have multiple sclerosis.
Your question comes down to a judgment call, ones that we make with our patients in the office frequently. Most women would have a preference to try to conceive naturally, and this is the starting place in all cases. However, based on the status of your MS, your age, and the issues relating to your infertility, it is sometimes very appropriate to proceed with procedures, like IVF, to increase the likelihood of a pregnancy. In most cases, we encourage our patients to proceed with their plans for conception, delaying treatment during this interval. We monitor patients in this situation very closely and jump in with treatment as needed on an individual basis. Good luck with your plans!
Q: I was diagnosed with MS last year at the age of 46. I started taking a DMD as soon as I received the news, but now I was told my MS is Primary Progressive instead of RRMS and I am trying to decide if it is worth staying on the treatment or not? Also do I now have a greater risk of disability? What is the difference between RRMS and PPMS? The spasticity in my legs has gotten worse and I now have it in my arms, hips and shoulders sometimes.
A: There is currently no FDA-approved treatment for patients with primary progressive MS (PPMS). Patients with PPMS have a gradually progressive course from the beginning, compared with individuals with relapsing MS, who begin with a series of "attacks" or "relapses," with symptoms lasting days or weeks followed by partial or complete improvement.
Data from clinical trials on the currently available disease modifying agents for MS fail to show significant benefit in PPMS. A recently completed trial with daily Copaxone suggests a possible benefit in men with PPMS, but the trial overall was negative. There is a risk of disability over time in both groups of patients, although we hope to be able to avoid or delay disability to some extent with the currently approved treatments for relapsing MS.
Although disability in PPMS is likely to be progressive over time, this is not necessarily linear, and many patients enjoy good stability over long periods of time. There is great interest in developing new treatments for patients with primary as well as secondary MS, with considerable active research in this area. Results of an ongoing phase III trial using rituximab (Rituxen) for primary progressive MS should be available later this year. If these results show any benefit, this may be a good option for many patients.
As we wait for new avenues of treatment for PPMS, it is most important to maximize symptomatic treatment of gait, muscle stiffness, and other symptoms with a program of good nutrition, exercise, physical therapy, and medications, if appropriate. These measures can make a huge difference in day-to-day functioning and quality of life.
Q: My boyfriend has secondary progressive MS, but I do not. He is presently on cellcept for his therapy. I would like to know if it is safe to consider having children or would he have to come off his meds?
A: I cannot find any data about the effect of cellcept on the male recipient's likelihood of causing any fetal damage. It certainly is contraindicated in pregnant women and an explicit warning is given in that regard.
The effectiveness of cellcept in the suppression of multiple sclerosis is not proven. I would suggest you have a frank discussion with your gynecologist and your boyfriend's neurologist before attempting to become pregnant. They may be better able to answer questions about its effect on sperm formation and presence in the ejaculate. A review of relevant literature did not answer the question.