I Have severe spasticity and the only medication that has worked for me is Baclofen. I have developed an allergy to it, it makes me itch like I have poison oak. Does anyone have any information on something else that may work? Maybe something natural? Would sure like to find an alternative. I have primary prgressive MS.
I have severe spasticity and PPMS also. I had to take so much oral Baclofen that I had a hard time with it, although not the same problem you're having. I now have an Intrathecal Baclophen pump that seems to work great. If the spasticity gets worse, which it does as time goes along, the doctor adjusts the amount going into my spine. The medicine is not going throughout my body so I don't have the side effects. I've had the pump for 2-1/2 years.
I have been diagnosed with RRMS, but before that when they were trying to figure out what was wrong with me and determine how to treat severe spasticity in my legs, for a couple years I was on a drug called Sulfasalazine, which seemed to bring me back to normal functionality. Later, when they were finding out I had MS, they put me on Baclofen...and it made me sicker than a dog. At that point, I stopped all meds and pursued 9-10 hours of sleep a day. I notice the spasticity kick in when I over do it or the other extreme of sitting all day.
Thank you Carol for your response. My Dr discussed that with me but I was afraid of it. Does it limit your ability to do things? Is it a problem bathing or wearing cothes around the area? I will discuss it with my Dr again. Anything you could share with me about the logistics of it I would appreciate. No side effects? That would be great!
The pump doesn't limit my ability to do anything that I can do. I use a scooter to get around, and go swimming on a regular basis (which is an absolutely amazing experience because in the water I can do all sorts of things I can't do on dry land). I can stand and walk with a walker short distances. The pump makes a buldge on my left abdomen but I just wear looser shirts, and pants with elastic waists. It doesn't hurt, and doesn't stop me from doing anything I want. The surgery was a one day thing. The test for it was spinal injections of increasing amounts of baclophin to determine if it was going to relax the spasticity. The actual amount of the medication I take is miniscule in comparison to the oral amount, and like I said no side effects. I can tell when it is time to up the dose and the call is mine.
I'll be glad to answer any other questions. I put it off for quite a while too. I was diagnosed 20 years ago.
I sure hope you find something that works for you. I tried Baclofen and found it ineffective for me and switched to Zanaflex. It's hard to believe that any spasticity or spasms could get worse on it because it makes me soooo zonked! But different people react differently to each med, that's for sure. I have been able to do okay on taking 2 Zanaflex tablets at bed time and it was controlling my issues well until recently and the doc and I are discussing increasing it now. I find that if I take it at bedtime my muscles stay very relaxed in my sleep, as opposed to tossing/turning as much in pain, etc, and the effects of relaxation seem to carry on 'somewhat without the sleepiness I would get if I took it during the day. I've been doing that for about 4 years but lately I've been worsening so I'm not sure if I"ll get away with that forever. I slip into denial at times and decide I can try to do without it and I pay for it big time with a good dose of reality check! Good luck, hope you find the right mix for you, wish I knew of something else to help out. SaharaRN
I wanted to share some quotes from a book written by Joan Bello entitled, The Benefits of Marijuana: Physical, Psychological and Spiritual to respond to the postings about spasticity. The author has a section concerning MS which runs on pages 107 through 113. The book is 160 pages long and can be purchased on-line through Amazon.com.
I’ll try summarize the information, but I also have the entire chapter available as an email attachment. The following details are all direct quotes from the book.
(Note: When I first tried to post this information I learned it was too long to accept. I’ll try to add the material in smaller doses over a few more postings).
....In hearings before the State of California to determine whether or not Marijuana Therapy ameliorated the symptoms of MS, the patients were sworn to tell the truth, and really had no reason whatsoever to lie, yet their “anecdotal” testimony was disregarded by the conventional health care professionals as being unscientific and therefore without value.
Valerie Leith Cover: “Prior to smoking, I was throwing up and suffering from spasms. However, within five minutes of smoking marijuana, I stopped vomiting, no longer felt nauseous, and noticed my intense spasms were significantly reduced. The sense of ‘shakiness’ which I constantly felt deep inside me seemed to diminish. At one point, without thinking, I stood up unaided!” (May 8, 1987)
Having been on a very high regimen of ACTH (which triggers the body to release mega-doses of its own steroids), and owing to severe and dangerous side-effects, Mr. Paufler, another MS patient, decided—for the third time—to stop using this medication.
Gary Paufler: “The ACTH was making me worse and the side-effects were overwhelming me. I was bedridden. If it was a choice between this treatment, I would rather have MS. I was placed on prednisone (a steroid) in its place. Medical records indicate I died that day...there was a nearly total absence of potassium in my body (from taking prescribed drugs). I stopped all steroid drugs but continued using valium.
“I began smoking marijuana...to get high. One evening some old friends came to visit, and we smoked several joints. When my friends got up to say good-bye, I stood up. Everybody stared. I was stunned. (Then) I walked. The longer I smoked marijuana, the better I got. My eyesight returned. I began walking, my spasms were nonexistent.” (May 11, 1987)....
Since MS is a disease that is treated mainly for its symptoms, the doctors have tried just about anything imaginable that might help this energetic failing—from electrical current, to diet, to vitamin therapy—in hope of spurring repair of damaged nerve fibers, they have used all range of depressants to dampen the spasticity associated with MS, and, most recently, the employment of immune suppressants to slow, or try to eliminate yet further deterioration to the nerve bundles....
The THC molecule has a unique receptor at the site of the Autonomic Nervous System which directs our involuntary body/mind reactions. Immediately upon smoking marijuana, we breathe more fully and our breath is more fully oxygenated. The severe weakness associated with MS is just as immediately lessened. More oxygen is delivered to the entire body—including to the atrophied or oxygen deprived muscles—which in turn feel stronger (because they are). The brain is likewise delivered more oxygen and, since THC provides a bilateral, balanced delivery to this bifurcated organ, this helps lessen symptoms of spasticity and vertigo....
Loss of coordination (ataxia) is a very common occurrence in MS; it is one of the main debilitations reported to be dramatically improved with Marijuana Therapy. In 1989, a study was done by the Federal Republic of Germany which showed that smoking marijuana:
...may have powerful beneficial effects on both spasticity and ataxia; the anti-spastic actions of marijuana in both clinical rating and electrophysiological testing are similar to those seen in patients after clonidine, diazepam...The important difference is that marijuana apparently also has anti-ataxic actions not described to any anti-spastic drug....
The drugs that are usually administered for MS almost invariably help one symptom while aggravating another. The drugs that decrease spasticity are depressants which, as a side effect, further the symptoms of weakness and loss of coordination. And they also have the dangerous side effects (already listed) common to one-sided drugs. Spasticity is an excessive activity of motor neurons and an associated lack of reciprocal innervation. Scientific studies discovered one of the secrets of Marijuana Therapy when they found that both THC and CBD (another cannabis compound) caused
...an increased firing of threshold in individual neurons. Maybe cannabinoids modulate the intra-cellular metabolism and regulate the activity of multiple cellular processes....
Actually, because of the way THC affects the entire physiology (slightly increased heart rate and increased capacity of the lungs), the damaged, oxygen deprived nerves are reinvigorated or upgraded in their capacity—if not to normal, then at least to “better-than-before” capabilities. The muscle spasticity is generally relieved, owing to the relaxation of the entire musculature....
No synthetic drug has yet been manufactured that has “immune modulating” effects; instead, drugs act in an either exciting or depressing fashion. The miracle of THC in its effect on the immune system, however, has now been found to be “immuno-modulating” (Kusher, 1994). This is a significant discovery and one which suggests that marijuana is not indicated just for the symptoms of MS, but may actually help to halt its usual progression....
According to Dr. Grinspoon, Marihuana: The Forbidden Medicine, patients report that they find smoked herbal cannabis better at controlling their symptoms than synthetic derivatives, and “cannabis may even retard the progression of the disease”. This is an absolutely astounding observation, and one that deserves serious and immedicate study! Dr. Robert Pertwee (Dept. of Biomedical Science, Aberdeen University) wants to carry out a proper clinical trial of smoked cannabis for MS. Unfortunately, especially for MS victims, he still needs proper funding and a source for legal cannabis.
Dr. Philip A. Denney, M.D., 1522 Charles Dr., Redding, CA 96003, (530) 242-6784, specializes in "medical cannabis evaluation." The first visit costs $200 and after that he charges $100 to renew each prescription yearly. Unless prices have changed. I don't think anyone's insurance covers this yet.
Dr. Denney's office is professionally run and the staff is very helpful. He does a lot of teaching during the appointments and can probably answer any questions you might have about marijuana therapy. In my opion, he's not active in this field for the money, but is honestly convinced cannabis is an important medicine. Dr. Denney is also one of the pioneering MD's in California trying to raise awareness about this therapy.