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:

http://www.mstrust.org.uk/informatio...spasticity.jsp

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]

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 http://www.rlshelp.org/ 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.