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Hello,
With my AMN (diagnosed in 1986), spasticity is main issue (along with tightness and weakness in my legs). I've been on baclofen since my diagnosis, but I feel that the benefits are less. I've looked into the baclofen pump but I just don't like the idea. Other medications that I've tried (e.g. zanaflex) makes me too lethargic. Does anybody have any approaches to share?
Thanks,
Jason
Exercise Zanaflex Seizures Spasticity Baclofen Weakness Pain Neurontin Tegretol Diazepam
Hi Jason, I also have AMN and are on Baclofen. I also feel that Baclofen is not helping, but have not found anything that works better. I'm on 60mg daily. I spoke to my Nuerologist just recently and told him that I didn't think it was helping and he sujested that I cut back to 40mg and see what the effect is. I have now been on 40mg for approx 1 month and I feel that I'm not getting around like I was. I think I will go back to 60mg again. I just wish that there was something else that would be more benifical. If anyone knows of anything that can be sujested I would be more than willing to try it. All the best Jason,
Dennis.
One thing that I have heard about, but have yet to investigate is botox. Apparently, it can be used to combat the pain associated with spasticity. By the way, I have AMN, but do not currently take anything for spasticity.
My son had botox injections - they only worked for a very short time. He has a baclofen pump and it worked miracles on the spasticity and it does not affect him with lethargy.
My husband has CTX and extreme spasticity. He took Baclofen for many years. It helped, but not enough. He has had a Baclofen pump for about three years and it has not helped much. What has actually helped him most is Mirapex - it's a medication for Restless Leg Syndrome. Basically, we asked my husband's neurologist about it and he said it was worth a try. It has helped my husband with the tremors associated with the spasticity.
I take 40 mg. of baclofen 3x a day. Baclofen is pretty safe even in larger doses. I did the botox about 9 years ago (in my calf muscle to reduce spasticity/cloneness in my ankles).
I've heard Fampridine has worked. It was originally developed for MS. But there has been some success in 2 ALD patients.
Am I missing something ?
My interpretation of the discussion to date is that some persons are still able to get around (with or without mechanical aid ?) whilst using Baclofen.
Our son suffers from spacticity in the lower limbs but no pain (yet). So we have decided to live with the spacticity as he remains able to bear weight. We were advised this would not be the case if he was on Baclofen. Have we been given flawed advice ?
I believe that some patients experience some weakness while on baclofen, but it certainly does not restrict a patient from walking or other weight-bearing exercise. When I started on baclofen in 1986, I was still getting around pretty well. The baclofen pump uses an even smaller dose of the drug.
If your son started taking baclofen orally, he would probably start with a low dose (i.e. two 10 mg. doses a day) so that he could see if there were any side effects.
Thanks for the advice
Any other side effects of which we should be aware ?
Cliff
None that I am aware of -- at least any that are common.
I find it interesting that no one has said they experience a total loss of taste. Both my mother and I have absolutely no sense of taste! On one hand it's annoying, but on the other, you can eat beets and broccoli all day and it makes no difference....
Best wishes to all.
Andrea
Jason - my kids doctor has added Diazepam to the Baclofen. He said that it is enough to relax the muscles and help with spasticity. It does seem to help, and it is a low dosage. I give it at the same time as the Baclofen. When she was hospitalized it was hard to make the hospital staff "understand" that the Diazepam was for the spasticity and not "nerves". Donna
I also had a lot of success with Botox, but it didn't last for the "months" that the Doctor told me it would. In fact, it lasted only 7 days or so. But it was a great 7 days. I had flexibility that I hadn't had for years.
The cost was thru the roof, several thousand dollars for each injection into my inner hamstrings.
I have been on Baclofen for a few years now. I take 10 mg 3x a day. It has really helped me alot. Without it I have alot more problems walking.
I have taken Baclofen for many years, and it has not affected my mobility detrimentally at all. As a matter of fact, without the drugs my legs are way too heavy feeling, and I can hardly get around. I also take Tegretol (I do not have seizures), along with the Baclofen and Neurontin. It sounds like a lot of medication, but it works for me and I work full time as a teacher.
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