Ask the Doctor
By Dr. Jack Burks
Q: Is plasmapheresis still a procedure being used in the treatment of MS? What are the risks and benefits, and where can I find out more information on this treatment?
A: Plasmapheresis, also known as "plasma exchange," is a procedure which extracts blood from the patient and sends it through a machine. This machine separates the blood cells from the plasma, and then replaces the plasma with a solution before returning the blood to the body. Plasmapheresis works by removing or diluting elements of the plasma in the blood that may contain antibodies, which can increase the damage caused by MS.
Plasmapheresis is used by some doctors in extreme cases, when a serious exacerbation does not respond to intravenous steroids. While this treatment improves the chances of recovery from that specific attack for some patients, the long-term benefits still remain uncertain. However, this temporary improvement may allow time for long-term therapy to be initiated.
The procedure is expensive and may need to be repeated. Numerous risks can occur with any such type of procedure, and your treating physician will need to discuss these risks with you. Usually people tolerate the procedure very well.
The Mayo Clinic has been a leader in the field of plasmapheresis for MS patients. According to the website for the Mayo Clinic (www.mayoclinic.com), "Plasma exchange may help restore neurological function in people with sudden severe attacks of MS-related disability who don't respond to high doses of steroid treatment... Replacing your plasma may dilute the activity of the destructive factors in your immune system, including antibodies that attack myelin, and help you to recover. Plasma exchange has no proven benefit beyond three months from the onset of the neurological symptoms."
I recommend that you first talk with your treating physician about the procedure and inquire about the feasibility of visiting an MS-specialty clinic. These clinics may be involved in MS clinical trials for you to consider.A list of clinics is available through the Consortium of Multiple Sclerosis Centers' (CMSC) website at www.mscare.org. If you don't have internet access, MSAA's Helpline consultants are able to assist you with finding an MS center near you. The MSAA's Helpline number is (800) 532-7667.
Q: Do you think that participating in an MS trial is a good idea?
A: Without clinical trials, we would have no scientifically valid treatments for multiple sclerosis and no FDA-approved treatments. I personally would like to thank all of the courageous MS patients who have taken certain risks to participate in such trials. By doing so, they have enabled the scientific community to develop the six FDA-approved medications that have helped so many MS patients over the past 14 years. Additionally, treatments now being studied for MS will offer even more therapies in the near future.
Therefore, from my perspective, I recommend that patients pursue learning about new clinical trials being conducted in their area. Those considering becoming a participant need to weigh the risks versus the benefits, and discuss these with their treating physician.
Additionally, I recommend that patients interested in clinical trials establish communication with specialty MS centers in their areas (see CMSC website listed on page 23) to be informed of future potential opportunities. I also advise that interested MS patients evaluate NARCOMS, which is a project of the CMSC. This program enables patients to participate in important research questions via the internet.
Clinical trials are becoming available for patients with primary-progressive disease (PPMS) and secondary-progressive disease (SPMS). These will provide new opportunities for patients who were not eligible for treatment trials previously.
Also, MS patients who are of African-American descent may respond differently to specific treatments, compared to Caucasians. Future trials may help us to understand the different responses within ethnic populations.
Q: I have had MS for about 10 years, and although I have had few exacerbations, two recent bouts have startled me – with symptoms of vertigo, headaches, numbness, and blurred or double vision. I had been taking Avonex for one year but have switched to Copaxone for the past four months. I am a 34 year-old African-American woman, and in the small town where I live and work, my situation appears to be very uncommon... I do see a neurologist, but my feeling is that he does not specialize in MS, so I wanted to get your advice.
A: While I am not your treating physician and do not give specific medical advice, your situation concerns me. The fact that you are an African-American woman with MS increases my concern, because as I noted in the answer to the previous question, African-American patients may respond differently to specific treatments, in comparison to Caucasian patients. You do not mention whether your two recent attacks occurred on Avonex or while on your new treatment with Copaxone.
My advice is to discuss your specific situation with your treating neurologist and ask if he or she would recommend you receive a second opinion from a specialized MS center in your region. I would suspect that if you have had no new attacks while on Copaxone, your neurologist would not recommend a change to your treatment plan. However, you need to be under close observation for the foreseeable future.
Q: My daughter had a terrible MS exacerbation two months ago, and while she is better, things are still not back to normal. Having been diagnosed at age 19, she's now 37 with three toddlers. She has never taken any of the medications for MS as she was doing great. Her MS specialist at a university has suggested participating in a clinical trial with Copaxone, where some participants receive a double dose. Patients are monitored every three months with MRIs, blood tests, etc. Do you have any opinion on this as far as her safety, and are getting several MRIs dangerous? We do have complete confidence in her MS specialist, but feel it never hurts to get another opinion. Thank you.
A: I feel badly that your daughter had a "terrible exacerbation" two months ago. I am pleased that she is getting better. While I do not give specific medical advice, I am strongly supportive of her MS specialist recommending treatment. In my opinion, the clinical trial with Copaxone is an excellent opportunity to evaluate a potential added benefit to an already FDA-approved MS treatment, which has helped so many patients. Your neurologist's recommendation to participate in the trial should be seriously considered.
In the preliminary trial of double-dose Copaxone, the clinical and MRI results were very encouraging. However, your daughter needs to discuss the potential increased side effects that might occur with any medication trial. I am not concerned about safety issues with numerous MRIs, unless she has had problems with the contrast material infused with this test. MRIs are not dangerous. You may also want to get a second opinion from another MS center in your area, although I believe you are receiving excellent advice.
Q: Recently, someone suggested a treatment of 3mg daily Naltrexone for MS (the website is www.LowDoseNaltrexone.org). I appreciate hearing your views about the treatment. I have had SPMS for the last 15 years and I take Copaxone.
A: From my perspective, low-dose Naltrexone has not been adequately tested in multiple sclerosis. Some of my patients who take this medication (against my medical recommendation) have reported feeling better, which may be due to endorphin changes in the brain or a placebo response. Does this treatment really change the course of MS? The data is just not available.
The first thing I recommend is to consult your treating physician and inquire about their impression on the benefits you have received from Copaxone. If your physician is not satisfied with your response to Copaxone, I would discuss other FDA-approved options for MS treatment. The bottom line is that I strongly favor treatments that have good scientific data versus treatments that primarily rely upon anecdotal experiences. Historically, more than 200 MS "treatments" have failed to demonstrate a benefit after being studied scientifically.
Many patients experience improvement even when they are placed on the placebo arm of a clinical trial, which means they are in the group receiving an inactive drug (trial participants do not know if they are in the group receiving a placebo or receiving the active drug being studied). Referred to as the "placebo effect," this positive response is not specifically related to the inactive drug they are receiving. Unfortunately, many of these patients have a short-lived response, which is unlikely to affect their long-term outcome of their disease. I would also ask your treating physician about clinical trials in secondary-progressive MS (SPMS), which have positive preliminary results. For example, MBP8298 is being tested in SPMS at more than 50 specialty centers in the United States.
For more information about drugs under development, please refer to this issue's cover story, "MS Research Update," beginning on page 7. Also, you may find information on experimental drugs in the Research News column of MSAA's Fall 2006 issue of The Motivator, which can be found by visiting www.mymsaa.org, clicking on "publications," followed by "The Motivator," and then selecting the desired issue. Readers without internet access may call MSAA's Helpline at (800) 532-7667 for assistance.
PLEASE NOTE: While several questions in this issue's "Ask the Doctor" column reference Copaxone, this is merely coincidental. MSAA does not endorse any one treatment over another. The policy of MSAA, and the opinion of our Chief Medical Officer Dr. Jack Burks, is that all individuals with MS should consult their treating neurologist or local MS center about FDA-approved, long-term treatment therapies for their MS. While not all individuals with MS are candidates for these treatments, the majority of patients can benefit from one of the six approved medications for MS. Additionally, MSAA receives a large number of questions for the Ask the Doctor column. Unfortunately, we are not able to print all of these questions, but in many cases, similar questions have been answered in previous issues of The Motivator. We try to include those questions which are either new to the column, or have not been recently addressed. Readers may refer to previous Ask the Doctor columns by viewing earlier issues of The Motivator on MSAA's website (www.mymsaa.org).
Jack Burks, MD, is a neurologist who specializes in MS. He is chief medical officer for MSAA, as well as president of the Multiple Sclerosis Alliance. Additionally, Dr. Burks is a clinical professor of medicine in neurology at the University of Nevada School of Medicine in Reno, Nevada, and a member of the Medical Advisory Board of the National MS Society. He has edited two textbooks on MS, and in the 1970s, Dr. Burks established the Rocky Mountain MS Center.
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|Last Updated on Monday, 25 March 2013 10:30|