How useful is Baclofen

[help2hand]

How useful is Baclofen to others? I was on it from before diagnosis, but it didn't really reduce spasms. My Neurologist then put me on to Quinine, but that didn't help either. I have now taken myself off both drugs (with the agreement of both GP & neurologist) and am on no medication apart from occasional Ibuprofen, which I find reduces my spasms more effectively than Baclofen ever did.

I deal with my spasms by relaxing and stretching out in bed (luckily I have a king size to myself) with my legs flat and supported, with an extra duvet to keep them warm if necessary. Much better than any drugs. I appreciate this will not work for all as my symptoms are milder than others, but I pass this on to see what others think.

How does the oncoming cold weather affect others? I find that the cold brings on spasms and causes me to lose balance, so I try to avoid being out on cold days.

[mariagno]

I have taken Baclofen since 1995 and have found it very useful. Timing and dosage levels are very important and overtime may need to be increased. I am in control of my dosing based upon how I feel or the climate. Cold can increase spasms but I also find exercise the day before can too. On good days 10 mg in the morning and 40 mg at bed time (reduces restless legs). On a bad day, 30 mg in am, 30mg in the afternoon, and 40 mg at night. I also take Gabapentin.

Also, a thin layer of long underwear helps me on cold days. On really cold days a thicker layer.

Be sure you are getting enough potassium, too. I find a vitamin and a banana a day is good enough. Keep up with the stretching throughout the day.

Long term daily use of ibuprofen, can cause gastric ulcers. Be sure to look out for any symptoms.

[julie_]

I am hoping that baclofen will help my mild spasticity as well. Actually, I was only just convinced recently to try baclofen by a new PT I've consulted. My symptoms are slowly getting worse, so I am hopeful. I understand that baclofen doesn't work for everyone.

[help2hand in reply to julie_]

I hope that Baclofen is helpful to you. It's just that I have found that neither it, nor quinine had any affect on my spasms. I have just seen my new neurologist and he has not been able to suggest anything different to help. Best wishes.

[lightnin77]

Baclifen has been a god send for me. Without it my elasticity is borderline like a CP patient.

[julie_]

Hello, I wanted to give an update on my experience with baclofen. This also relates to my experience with MS treatments.

Baclofen has helped me greatly with spasticity. I also have a touch of clonus so it helps with this as well. I am still working out the dosage, but generally, I take 5 mg in the morning, 5 mg in the late afternoon and my night dosage could be 5 or 10 mg, depending on how early/late I get to bed.

In November, I consulted a physical therapist who specializes in treating MS and Parkinson's patients. The therapist is the one who highly recommended my taking the baclofen, no question.

At this time, I began a program of PT exercises to help me with walking. I have/had a foot drop where the toes would drop down too soon and I end up tripping and falling. Actually, I haven't fallen in quite a while, but I am stiff and I don't walk very fast. Taking stairs, up and down, were getting more and more difficult. I felt I was losing balance and strength.

It has now been about 6 weeks and I am much improved. The therapist explained to me that I am not in fact losing strength, but I needed to relearn a skill. If something is causing me discomfort or pain, then I stop doing it. For example, I am always reaching for the handrails when taking the stairs. The program involves strengthening of the shins, stretching the calves and balancing. As long as I do these exercises a few times a day - shooting for 5 times a day - I function much better. There are some days when I can only do them 2 times a day and I notice the difference right away. In 6 weeks, I've only seen the therapist 4 times. The initial evaluation was one hour and subsequent visits were half an hour each. This means that it is up to me to incorporate the exercises into my daily life.

Anyway, I am in NYC and if anyone is interested in the name of my therapist, please send me a message. Other info about me: I am a 48 year old female and strength train once a week and practice tai chi once a week.