Anyone Know About Restulex?

[mparmy98]

I have had a pretty bad case of RLS for years. My doctor has me to the max medication he will give me, 3mg Ropinirole once a day. It is fine for sleeping at night once it takes effect, but I don't like the side affects (tired, sometimes nausia). And, it doesn't help any for the rest of the day when I have RLS issues. I read about a natural medicine for RLS called Restulex (http://www.restulex.com/), but can't find enough about it to support my decision to try it. So, I thought I'd throw it out to see if anyone knows about this FDA-Approved product. Thanks.

[Polar Bear]

My first reaction is that most folks find that over the counter medications don't do the trick for RLS/WED symptoms. But we are all different and I guess anything is worth a try.

I think that Ropinerole can be given up to 4mg as a single dose once a day, but of course your doctor has to be willing to do that, and personally I feel it is rather a large dose to take all at once. As I have symptoms 24/7 I take medication 24/7 but supplement my ropinerole with tramadol to keep the doses of each drug as low as possible.

Have you discussed with your doc how to deal with daytime symptoms, or using a different medication during the day. Please see the link in my signature which provides good information and suitable for discussing with your doctor.

Your nausea may be helped by taking your ropinerole with food.
Also, did you have daytime symptoms when you first started taking ropinerole and how long have you been on it. Did you start at a much lower dose and has the dosage been gradually increased. Have the daytime symptoms been recent otherwise why has your doctor not taken them into consideration.

Please consider having your ferritin level checked. Ferritin is the blood storage level in the brain and the test is not done automatically with general bloodworks. You are seeking a level of around 100, even tho your doc may consider 20 to be normal. 20 is not high enough for RLS/WED sufferers. To take ropinerole or any DA it is best to have a ferritin level of near 100 before starting.

[mparmy98]

Thanks for the info. I have a good doctor but I get the feeling this is not one of his strong topics; I moved 2 1/2 years ago, so he is new to my personal condition. My doseage has been gradually increased over the past 5 years. I started with 1mg for several years, but as they got worse I was increased to the 3mg I take now. Initailly, it was strictly in the evening and a night. But, as my RLS has grown worse it has extended to any time of the day. I have taken nothing else with it, nor have I ever had a Ferritin check. I am due a physical, so I will include that in my list of things for him to run on my bloodwork and will bring the information so I can have a good discussion with him on it.

Thanks again for the help. I think I'll look into these before I try something new on my own.

[Polar Bear]

My own opinion is that 1 mg ropinerole was quite a high starting dose.
Yes, have your ferritin checked, you need to know what your level is, especially as augmentation is more likely when on the higher DA doses and also with lower ferritin.
My own GP had little knowledge of RLS/WED, he said that I knew much more than him (he was not being sarcastic) and was pleased that I had researched and could provide him with Mayo Clinic information. He was willing to discuss the information with me, and one day actually rang me at home while he was on the RLS Foundation site so I could speedily direct him to the relevant information. So he and I were both on the site at the same time and discussing the issues. A doctor who is willing to learn can be your best friend.

[badnights]

If your doctor is reluctant to exceed 3 mg, I would be pleased with him; too many horror stories on this board lately of doctors giving way too high doses of the DAs.

As Polar Bear suggests, it's important to test the levels of ferritin in your blood, and it's not part of the normal iron workup. Ferritin is a protein that transports iron and for some reason can reflect low levels of iron in the brain (which is one of the main problems in WED/RLS). A study published in 2011 showed that low ferritin levels are associated with greater liklihood of augmentation on DAs (augmentation is when the medication makes the symptoms worse - check the doc in Polar Bear's signature for a more accurate description). As PB says, the recommendation is to have over 100, even though some labs will say "normal" for levels of only 20.

Be sure to discuss the daytime symptoms with your doctor. Sometimes we're so grateful for relief that we don't mention how incomplete that relief is.

As for Restulex, I have heard of it a few times on this board, so you could try the search function. One (two?) people said it worked for them but had only been trying it for a few nights. Since WED is strongly susceptible to the placebo effect, I would be more interested in hearing how they fared over time.

[mparmy98]

Thanks for the replys. Since my RLS is getting worse, I am really try to find answers that don't include increased or additional medication. My doctor is not big on medicine being the total answer, so I printed out the checklist and will spend more time chatting with him on my next physical. One of my problems could also be that I drink a couple cups of coffee each morning, although I don't otherwise drink much soda or tea. I'll keep on it.

[rthom]

Any aspartame in your diet? That and chocolate can be aggravating as well.

[mparmy98]

No, I stay away from that. Nor do I don't eat much chocolate.

[JanDell]

Hi, I'm new to this board and have been reading on here for the last 2 days. I've learned a great deal that I'm sure will be helpful. One thing I wanted to say to mparmy98 is that even 1 cup of coffee has always set my nerves on edge. Any caffeine does that to me. Have you tried cutting out all caffeine? I've only had this 1.5 years where it really started to bother me, but currently it's pretty bad and sleeping is difficult. Until until recently my RLS was on and off every few weeks or so, then about 3 weeks ago it started up every day and has grown progressively worse every day. Yes I have lots of stress in my life, but there is no way I can avoid it, but I can tell you, caffeine would absolutely make it much worse...and that goes for salt and sugar too. Hope that helps a bit. I really know how you feel.

[mparmy98]

Thanks for the input. Caffine is definitely an issue with me and I do believe it contributes. I really need to work on it. I, too, am getting a bit worse with it as I get older. It now spans more than just the evenings. Best of luck.

[badnights]

The half-life of caffeinne in the body ranges from 5 to 7 hrs in most people, so having two cups at 8 AM means there could be as much as one cup's worth of caffeine still in your bloodstream at 3 PM and 1/2 cup's worth still at 10PM.

On the other hand, it might be largely gone if you metabolize it quickly. you have to see how it affects you personally.