spasticity meds?

[Cat Dancer]

I'm looking for suggestions I can make to my doctor re: spasticity meds. Got it bad in my legs in particular, and one hip. He has me on ropinirole, 2xday, but that is really a drug for "restless leg syndrome"-- which this isn't, or Parkinsons -- which this isn't. It works, for awhile...but wears off quickly. And by morning (I take a dose at bedtime) my legs are so weak and spasm-y that it's increasingly difficult to transfer from bed to chair to toilet and back...

so I need something else. For the first time in 20 years (!) I'm going to get a referral to a neuro, but what to have some idea of what he might be talking about when he suggests something.. Thanks.

Cat

[funnylegs4]

I have spasticity from Cerebral Palsy and have never used meds. However I hear botox is good for your type of situation. I am NOT an expert though. Wish I could help more.

[agate]

There's Soma (carisoprodol). I've used it often. Sometimes it caused slight light-headedness, and sometimes it didn't seem to help much. Other times it helped amazingly. I luckily haven't wanted it for the last several years but always keep some on hand.

All it would take would be another session with kidney stone pain and I'd be reaching for it.

[SalpalSally]

I don't use meds for spasticity. I never found one that didn't make me weak and dopey. I do the stretch exercise routine and it works some, but I must do the PT every day, twice even. If I skip it, I go back to weak and spasmy.

Here's hoping you find a solution, Cat.






..

[agate]

This might be of some help:

Only registered and activated users can see links., Click Here To Register...

Good luck with the neuro appointment. Will this be a neuro you already know?

[ssusan]

I take Baclofen. It helps some. I take five 10 mg tabs a day spread out. Stretching helps. Baclofen doesn't have sx for me.
fwiw
~Susan

[Cat Dancer]

Thanks to all of you for your suggestions. And Agate, that website is exactly the sort of information I was looking for. I've printed it out and will take it with me.

No, the new neuro is not someone I know. The neuro I used to go to, 20- plus years ago, died about 10 years ago. (which in part explains why I haven't been back). But the clinic I'm trying to get in to is the one he founded. Who knows, maybe some of those old records are still around there somewhere. Otherwise I have copies of most of my pertinent records anyway. :)
Thanks again, everyone..

Cat

[Burr]

I also have used baclofen for years now. It does help with the spasticity, but doesn't help with the pain. I take other meds for that. Come to think of it, I take so many different meds, I don't know which one does what now ! lol.

[snack]

RLS

I don't know if your doc is an RLS specialist so I thought I would mention that ropinerole (and Mirapex the other dopamine RLS drug) cause cramps and spasticity to get a lot worse when you try to get off of it or if you suffer from augmentation (when it stops working and or the dosage needs to be increased too often).

So when Ropinerole stops working spasms will increase to much worse than before. It normally takes a strong opioid to dampen/remove the spasms when getting off of it and depending on how long you have been on it it could take from a couple of weeks to a couple of months. I did not know this when I stopped using Ropinerole and I had two weeks of spasms hell. It is not a drug that is used for MS spasms. So if you stop Ropinerole and start taking say Baclofen right away it will probably not work at all until the Ropinrole mega spasms thing is over and done with in other words it does not mean that Baclofen does not work it just means it is not enough to remove the Ropinerole induced spams from stopping.

If you do have a bit of RLS spasms the new drug Horizant is much better according to my RLS doc (my neuro claimed he was an RLS expert but clearly wasn't), but often not covered by insurance. I tried it but it worked just so so on me, but better than ropinerole. It is a slow release drug that breaks down into gabapentin in the colon I believe so more better utilization than regular gabapentin and apparently works quite differently, but seems to reduce some pain as well in people which could be a benefit for people with MS and RLS.

On Only registered and activated users can see links., Click Here To Register... there is an RLS doc that answers questions, 100 pages worth and plenty of information on the various drugs including Ropinerole. And if my tired scatter brain post does not make sense the doc on the site does.

I alternate between MJ, Valium and Horizant as nothing seems to work more than a couple of months at a time for me.

[jendie]

I take generic Zanaflex- tizanadine. I took Baclofen for a few years after I was first dx with MS, but then switched tizanadine in 2002.

[joshremus]

I take a combo of baclofen (20mg/20mg/10mg) & tizanidine (4mg/2mg/2mg/6mg). At the moment that works for me.
A few months ago I was having more trouble with spasticity in the mornings, so they added the 10mg baclofen at night, and I went from 2mg -> 4mg in the mornings on the tizanidine.
I will mess around with the dosings trying to get things just right based on my current issues. If I find a combo that works better, I will call my neuro and update them.
The combo of the two was the key to controlling the spasticity for me.
Josh

[KellyinMD]

Hi Cat,

I have been through so many of them it's rediculous. When it got bad 5(?)years ago I started Baclofen (80mg per day) worked for sometime, but made me sleepy amd stopped working (I actually still worked back then). After a bad flare (the endless one that put me out of work) tried Soma, Flexeril.....no help. Zanaflex is about the only drug that has ever knocked me out completely (almost as bad as when my pain dr. tried me on methadone...NO THANKS!). Now the only thing I take for it is 5mg valium 3X a day and PT. When I go to PT I have knots in the muscles and it really helps to have them worked out. The spasticity pain and fatigue are my worst problems.

I have not been on a DMD for about 5 years. My Neuro is very "old school" and only uses ABCR. I have failed them (well B and C and the other 2 are the same). Ijust startede with a new neuro too. You are right, it is hard. She is my pain Dr's wife and I have to travel a little furtherbut it's worth it. I have had a horrrible summer. When she ran MRI's my brain lesion was enhanced and my C-spine has new damage. It is not good to be progressing and doing nothing about it. Since I no longer respond to IVSM, she put me on ACTHar gel and it seems to be working well. I also started Gilenya about 3 weeks ago and have dumped several meds that were not doing anything for me. It's nice to have a doctor that thinks whatever DMD works for YOU is the best one. She is very firm with that and won't make changes just because someone wants a pill.

Anyway, sorry for the book, spasticity stinks and I do hope you get some answers.

I have been gone for ages and just started coming back here recently. It's really good to "see" you again!

Take care,

Kelly

[Kittianne54]

When I was diagnosed (10/01) I was very spastic. I was put on baclofen, started small and gradually increased (I was told it had to build up). I knew when it kicked in because one day I was able to reach my feet! Eventually, I was taking my neuro's limit (100 mg per day) and still needed more. That's when I got the baclofen pump.

[soul]

Hello Cat Dancer its been a while
First CatD. I would recommend Marijuana if your uncomfortable with this option check out Sativex a Marijuana extract, I am not to sure if Sativex has passed FDA approval yet
soul

[andreagwolford]

Have you tried cyclobenzaprine? I read about it and got to know that it's relatively cheap and very much effective in treating spasticity. A friend of mine has MS and she also used the same medicine as a muscle relaxant to treat muscle spasms. A doctor recommended it to her. Hope it helps you out.

Love,
Andrea G Wolford