Hi from UK! Have been taking Stalevo for nearly 2 years but restless legs still a trouble in evenings. Anybody tried Horizant?

[simplesoul13]

Stalevo alleviates restless leg on Parkinson's side but I also get restless leg on right side! which I can't shift. I've had restless leg syndrome for years before PD started and I used to run on the spot to shut it up but that doesn't work anymore. Useless PD nurse refuses to believe I have RLS which can't be relieved by Stalevo! Recently read about Horizant - if anyone can help? Thanks

[Hikoi]

Hi

Are you on an agonist? Thats the usual treatment for RLS.

[ldq1997]

Google says that Stalevo is Carbidopa, Levodopa and Entacapone, a drug for Parkinson's. Horizant, however, according to Google is a drug for RLS (gabapentin enacarbil).

[simplesoul13]

Hi there! Yes Stalevo is for PD and does keep RLS under control on my PD side (left) but I also get RLS on right side which Stalevo does not help. I have read up on Horizant which is for RLS but not sure if I like the sound of the side effects! Wonder if anybody uses it and can tell me about their experiences. Sounds mad doesn't it having two legs operating independently?! but I have times when the left leg starts and then when I move about and then sit down again it calms down and the right leg starts up! Absolutely drives me mad - I want to cut my legs off for some peace!!! Desperate of UK!!!

[Pete-1 in reply to simplesoul13]

You would probably still have RLS in the phantom limbs.

[beauxreflets]

Have you a good physiotherapist - If so ask them to give your lower back a massage and some follow on exercises

[Norton1]

Hello simplesoul13,

Please buy yourself some magnesium citrate tablets today and start taking the recommended daily dose. About 80% of us in western countries are deficient in this essential mineral, you are probably one of us. If you take up this suggestion, please keep us informed.

Regards

Norton

[allofatremor]

Could I ask how long you have had PD? and were you put on Stavelo from the start? The reason I ask is because my Husband was put on it about 2months ago, after he did not show much improvement from Sinemet plus. He is slightly improved, just wondered what comes next, he was diagnosed in february, but has been unwell for about 18months prior to that. The specialist says he will have back to 95% him old self within a year??? it just seems to be one big long waiting game. Regarding RLS I don't suffer with PD but have suffered with RLS for years, my whole family get it (defo hereditory) I even get it in my arms sometimes, and some family members get it in their feet!!!! the only relief I get is from getting up and moving about, it is the most awful thing to have, without also having PD. One thing I have been told to try is Aloe Vera, apparently there are different kinds of aloe vera on the market, some more powerful then others so i am trying to get the right one I know it is quite expensive (the one that works,that is) the cheaper ones you can buy are not as effective. My heart goes out to you, xxx

[PatV in reply to allofatremor]

Sinemet plus is pretty useless. My neuro finally told me that it will NOT be absorbed unless taken on an empty stomach. When is that exactly?? besides first thing in morning. I take it in addition to Sinemet. I would inquire about regular sinemet. In the meantime I would recommend as much exercise as possible!

[allofatremor]

PS

I was going to try magnesium supplements, but heard that it can play havoc with your bowels, but everyone is so different, my sister swears that it gives her copious amounts of energy, so maybe I will give it a go.

[simplesoul13]

Hi all from UK! Thanks for all the interest and help. I already take a magnesium supplement in the form of magnesium oxide 200mg every other day as part of a multimineral supplement. Perhaps the citrate form is better? Have taken dolomite in the past (naturally occurring magnesium and calcium). The only trouble with magnesium (despite all its good points) is that it makes my bowels loose (for want of a better expression!). I'm already having problems with Stalevo having the same effect! My Stalevo dosage at the moment is 4x100mg levodopa+25mg carbidopa+200mg entacapone and 1x125mg levodopa+31.25mg carbidopa+200mg entacapone - the last is taken just before bed - supposedly to last the whole night! but even taking it at 1am it doesn't last all night and the mornings are always my worst time of day. The physio is a possibility although it takes weeks to get an appointment with the NHS, I will investigate further.

[simplesoul13]

Hi again from UK! Pressed the wrong button just as I was about to finish! I started on Sinemet about 4 years ago - only a low dosage to start - but I find Stalevo is much better. Nothing is perfect of course. Thanks for everything and hope to keep the dialogue going! Bye for now and good luck with everything!

[Pete-1]

Yes Stalevo is just a combination of Sinemet and Entacopone both very definitely PD drugs. Horizant has loads of web entries. Try drugs.com/horizant.html.

Drugs known collectively as Dopamine agonists are often used to treat RLS. Examples Ropinirole and Pramipexole. Some say that Pramipexole is the most effective in countering RLS.

The snag with these types of drug is when you want to stop taking them. Very difficult due to very unpleasant withdrawal symptoms. Search for DAWS (Dopamine Agonist Withdrawal Syndrome). Very often people need professional help to rid themselves of Dopamine agonists.