Ask the Doctor: Why Don’t Approved Drugs Work for Progressive MS?
By Dr. Jack Burks
Chief Medical Officer for MSAA
Q: Since my diagnosis almost six years ago, it seems as if research is truly making progress with medications to treat MS relapses. The really great thing is that MS patients now have an oral medication available to them, in addition to the medications given through injections or infusions.
Most of the new medications are for those with relapsing-remitting MS (RRMS). Is there any effective drug for those of us with progressive MS? And, if the medications for RRMS can reduce relapses, why wouldn’t these same medications work to slow the progression of MS for individuals who do not have relapses?
A: Thanks for your excellent thoughts and good questions. No medication is approved by the FDA (Food and Drug Administration) for MS-disease progression, unless relapses are also present. The postulated mechanism of action of current MS treatments is a reduction of inflammation in the brain and spinal cord. Inflammation is thought to cause relapses.
The cause of progressive symptoms is not as well understood.We think a degenerative (versus an inflammatory) process is partially responsible for MS progression.While the eventual understanding will likely be much more complicated, this theory says that antiinflammatory drugs work against inflammatory cells but do not work well on degeneration, the cause of progression.
Our hope is to find medications that will help both inflammation and degeneration. The good news is that research into treatments for progression (and even remyelination) is in progress. Therefore, the future for those with progressive MS is looking brighter.
Q: I was diagnosed with MS in 2007 and have done really well. After trying two other injectable disease-modifying therapies, I am now taking Betaseron. I had to have a catheter once to help me urinate. The urologist put me on Flomax and that straightened everything out. I am off Flomax at this time and doing well.
My question is: can MS cause problems in the vaginal area? I have problems sometimes with my vaginal area becoming inflamed, swollen, and very irritated. I have had these problems for years. I have also had diarrhea for years. During my last episode I went to my gynecologist and he really did not know what was going on.What kind of doctor should I see for this problem?
A: I am pleased that you are doing well with your MS. Vaginal symptoms are not uncommon in MS. Dryness with poor lubrication, irritation, pain with intercourse, and intense muscle spasms with (or without) intercourse may be related to MS.
However, something else may be going on and I would suggest that you seek another opinion from a second gynecologist. Your urologist may also have some helpful suggestions. I would also have your thyroid checked since a low thyroid can contribute to this problem. Vaginal infection is another possibility. Some MS patients with vaginal muscle spasms are helped with anti-epilepsy drugs or drugs used to treat painful sensations in other parts of the body. Neurontin® (gabapentin), Lyrica® (pregabalin), and Cymbalta® (duloxetine HCI) are examples.
Diarrhea is also seen in MS patients, but it is not as common as constipation. I recommend that you discuss this issue with your neurologist or a gastrointestinal specialist. The specific treatment will depend on the exact cause of your diarrhea.
Q: I am a 45-year-old female and was diagnosed with MS a little more than two years ago, but had symptoms for more than a year before that. This year I have steadily gotten worse, and have gone from a cane to a walker, then a wheelchair and now a power chair. It has recently started to affect my hands quite badly.
My question is about my legs that are always cold, and it feels as though they are sitting in a bucket of ice. I have other family members and friends who also have MS, but no one else has this issue. My legs have been like this for about a year and a half. Is there anything that can be done about my legs feeling cold? It isn’t too bad in the summer, but in the winter I am freezing all of the time. I know that too much heat is not good for people with MS, but the hotter the better for my legs, although it still doesn’t warm them up completely. Any suggestions would be most helpful!
A: Your first paragraph is very disturbing. The rapidness of your declining neurological condition is extremely unusual. In one year, going from a cane to a power chair leads me to suggest that you consider a second opinion about your MS and its treatment.
“Cold legs” can be a symptom of MS, although other causes are also possible. Your doctor may send you to a specialist for consultation. Treating this symptom is a challenge. A specialty MS center near you might be your best source of information. Neurontin® (gabapentin), and other medication, as well as biofeedback, selfhypnosis, guided imagery, massages, warm (not hot) towels, vitamin B-12 shots, and niacin are suggestions that have not been proven in clinical studies, but may be of help to you. In extreme cases, an autonomic nerve block may be considered.
To Submit Questions to Ask the Doctor…
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c/o Dr. Jack Burks
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Cherry Hill, NJ 08034
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Jack Burks, MD is the chief medical officer for MSAA. He is an international MS neurologist, writer, lecturer, and researcher, who assists with the development of new MS therapies.