Dantrolene anyone?
 

Jim's neuro is going to have him try Dantrolene. It is a medication for muscle spasms. He will need routine liver checks as it can damage the liver. :rolleyes:

If this medication works, she will begin withdrawing him from Baclofen and Tizanadine at our request. She agreed to this because we voiced our concerns about the amount of medication he is on. If only they would pass the medical cannabis bill he wouldn't even need new medication. However, that is hurdle to be addressed another time. ;)

Anyone here try Dantrolene?

I've never heard of it, Sandy, but I hope it helps Jim. Baclofen really didn't help me much when I was having spasticity in my legs but I know it has been a lifesaver for many who take it. Let us know how he does on the new med.

I havent heard of it either, but if it helps, we are counting on you to tell us all about it. :cool:

I always get the freshest scoop at NT. Sometimes I surprise my neuro, knowing stuff he doesn't. One neuro had to Google stuff as I sat there.

Cant wait to hear outcome. I get them severely with 120mg baclofen/day.

Still waiting for the script to get here. The VA hospital mails it out. It was ordered on the 11th. I called the pharmacy and they told me it was pending. I of course asked why and was told they have hundreds of scripts going out. They processed it today. Funny how they were able to get to it when I called. :rolleyes:

Anyway, I called the neuro and she will call a script in tomorrow to Walgreen's before we go on vacation. I doubt the one from the hospital will get here before then.

Stay tuned! :D

Well, it's been three weeks now and Jim has titrated up to three pills, 25mgs each, a day of Dantrolene. His legs no longer cross over each other and have a mind of their own. It's not a cure all, he still has stiffness, but it's working better than Baclofen and Tizanidine. He will see his neuro on Monday and I suspect we'll start weening off the Baclofen and Tizanidine. He's also using medical mj to help with the stiffness and this may be the perfect cocktail for him. If they legalize medical mj in Illinois, he will try to ween off Dantrolene, but until then we stay on it.

He also has a blood test to check his liver enzymes Monday. If all is OK, he gets to stay on Dantrolene. If his liver enzymes are elevated, he can't take it. Fingers crossed the enzymes are not elevated!

Fingers crossed here too!:hug:

And toes!!:)

Waiting to hear with fingers crossed.

Wish you (and the rest of us that need it) luck!

Sandy,
I couldn't believe it when you said yesterday that Jim was on both Baclofen and Tizanadine (sp).
Know that my prayers are with Jim,and you of course. He is such a warrior...his body is weak, but I could tell how truly strong his spirit is...give him a hug for me...and you're a blessing! Thanks for working so hard for all of us who are in such pain...:hug:

Debbie, I am so happy your going to be part of our team! It's the patients of Illinois that are going to make the difference. :hug:

:Dancing-Chilli: IT WORKED!:Dancing-Chilli:

Jim's liver enzymes were normal and he is now on his way to weening off Tizanidine and Baclofen, as well as Zanax which was used for his hand tremors! Of course we will watch him closely for any signs his symptoms come back. His neuro will be increasing his Dantrolene as needed, if any.

The Dantrolene is working, not perfect, but it's working! Much better than Baclofen or Tizanidine.

Sad news, his neuro is retiring in December and his spinal cord doctor is leaving this August. So good and sad news.

Awesome congrats! Are spasms almost squashed?? 120mg baclofen for me and I still get TERRIBLE spasms!

The terrible shaking and uncontrollable crossing of the legs is gone. He used to wake up with his legs twisted like a pretzel but not any more. The legs are still stiff at times but a little medical cannabis takes care of that. :wink: Overall, 10x better.