New Member, Hello!

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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jdusaf
Posts: 1
Joined: Fri Nov 13, 2020 6:49 pm

New Member, Hello!

Post by jdusaf »

Hi everyone,

I'm a 41 year old male, just recently given a working diagnosis of RLS despite no history of this in the past. Symptoms are a lot of what is described here...crawling, twitchy sensations in the legs, mostly calves. Only comes about when attempting to rest/relax and is abated when walking about. Worse at night but after a few nights of bad/limited sleep starts to encroach into the daytime. Muscle jerking at night when attempting to fall asleep can keep me up all night. As I write this I've probably gotten about 6-8 hours of low quality sleep over the last 72. Paradoxically, I dont really even feel that tired though as I would expect, so dunno what thats all about. So not much fun as I'm sure everyone on here knows.

Got referred to a Neurologist in my local area who ordered an Iron/Ferritin test (as well as a thyroid/B12 test both normal). Numbers seem normal. 110 ug/dL Iron, 124 ng/mL Ferritin. Prescribed me a couple days ago Ropinrole at 0.25 mg, have taken one each night past couple nights and nothing, no improvement. Just a slightly nauseous stomach. Was going to try to go for 0.50 mg tonight and if that's a fail just stop trying with this.

So anyways, kind of lost at the moment, since Im new to this was hoping to get in here before I get too far down the road on treatment for this to maybe avoid some common pitfalls that doctors or patients make while trying to find something that works. I have heard not great things about dopamine agonists like Ropinrole as a first cut, so maybe some folks have a better idea of what to try or suggest to my Neuro. My Neuro seems competent but the office itself is a bit of a mess, can wait for 30-45 minutes to get someone on the phone to make an appt, they faxed the wrong blood work order to the lab and i had to drive across town to get the right blood work done, etc.

So hello, wish I could say I was glad to be here, but I am encouraged that their seems to be a vibrant and committed community to help socialize the particulars of dealing with this disease and would love to hear any advice/experience anyone might have!

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: New Member, Hello!

Post by Rustsmith »

We are also sorry that you need to be here but are glad that you found us.

Your symptoms certainly fit with a diagnosis of RLS. The only criterion on the official diagnostic questionnaire that you did not tick off was that your doctor ruled out any other condition that would explain your symptoms. But that one is pretty much a formality since there isn't anything that simultaneously covers the need to move, relieved by getting up and walking around and only at occurs when resting in the evening or at night.

As you probably already know, your ferritin level is above the minimum recommended for RLS (100 ng/mL). That does not mean that increasing your iron levels wouldn't help, but oral iron supplements probably won't be effective at that level and you are not very likely to get a recommendation for an iron IV treatment.

Iron therapy is the first line of RLS treatment in the current consensus treatment guide. The second step is the use of one of the anti-convulsant meds. These are generally gabapentin, Horizant or Lyrica. Gabapentin is usually tried first because it is very inexpensive. Horizant is a modified form of gabapentin (and is expensive) and Lyrica is similar to them with a cost that isn't as high as Horizant. These meds only work for about 65% of us when it comes to movement urges, but they can be very useful to help with sleep. Many of us use them in combination with other meds because of this.

The dopamine agonists (pramipexole, ropinerole and rotigatine are very similar except that they can have different side effects (and the rotigatine patch is more expensive because it is not a generic). Your experience with stomach upset on ropinerole is not unusual, but that usually goes away after a couple of days. Your dose is still low, so it isn't too surprising that you didn't get much help at this level. Hopefully you do better on 0.5mg (which is still pretty low).

The final grouping of meds are the opioids and these are reserved for those who have failed the other three groups and are usually only used for those who have augmented on the dopamine agonists.

As for your experience with not being too tired despite several nights of poor sleep, that is a characteristic of RLS that isn't usually covered by the research because it is about the only "good" symptom. Most of us can function reasonably well despite consistent poor sleep. The only risk is that after a while, you feel fine but start having micro-sleeps during the day. When these gets bad, they can result in traffic accidents or falls, but you should have an idea that things are getting to be a problem before that happens. The current understanding of the neurochemistry behind RLS can explain this, but knowing the chemistry doesn't help us and the only current "treatment" is use of the anti-convulsants to help with sleep. And along those lines, don't bother trying any of the sleep aids. The OTC meds are all based on Benedryl, which is one of the strongest RLS triggers. As for the prescription sleeping pills, such as Ambien, Lunesta, Belsomra or Trazadone, these either do not work for us or can leave you wide awake but staggering around like a drunk because the med has reduced your coordination without letting you fall asleep.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New Member, Hello!

Post by stjohnh »

Welcome, and I hope you get better relief soon. If you still don't get good results with ropinrole at a higher dose, I'd suggest talking to the doc about switching to gabapentin, which is the action point that Steve was discussing. I'd try gabapentin for a week or so, increasing the dose slowly until either you get good control of your urge-to-move (calves jumping) or too sleepy the next day. At that point, if you still don't get adequate control to sleep, I'd suggest cutting back the gabpentin to a tolerable dose and add pramipexole at 0.125mg in the evening. Pramipexole for many people has less nausea than ropinirole.

Bear in mind, the goal is NOT to completely make you "normal." That would take too much medicine, meaning lots of side effects. The goal is to supress the symptoms enough that you can function and sleep adequately.
Blessings,
Holland

badnights
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Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New Member, Hello!

Post by badnights »

Hi and welcome. You've gotten good advice, so I'll just say hello. I hope the higher dose of ropinirole works.

Actually, I'll give a bit of advice (I can't help myself :) )
When you find a dose that works, be sure it's not over 1 mg, and from then on, monitor yourself for augmentation. If the dose that works stops working within a year or less*, it's quite possible that you're augmenting, as opposed to experiencing natural disease progression. If your symptoms spread to the arms or torso, or start earlier and earlier in the day, or increase in intensity, or start sooner after you sit or lie down, these are all possible signs of augmentation.
* Even if the dose stops working 3 years or 6 years from now, always evaluate for augmentation first.

A neurologist who is not educated about WED/RLS will suggest a dose increase when the patient is augmenting. Don't do it. When you're augmenting, usually it's time to get off the DA and try something else.

And remember what Holland said: total relief is not the goal. Augmentation seems to happen sooner in people who dose for total relief (anecdotally).
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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