New Symtoms - Need help w what to do

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Post Reply
lhoff12085
Posts: 69
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

New Symtoms - Need help w what to do

Post by lhoff12085 »

I started on ropinerole .25 in Feb and by May increased to .5. It was like a miracle drug. My main problems are involuntary limb movements during the night (preventing me from sleeping) and achiness in my legs all day. Moving and stretching helps but doesn't sustain. I actively excerise moderately - and when I deviate from my routine, I'm in great pain.

For the past month, I am having severe achiness (I call it pain) in my hips and knees, especially at night, which keeps me up. It's an issue during the day but I move around, stretch, and exercise to help. I've also tried Kratom which helps enormously when I have to study or sit for a long period. I've tried taking another .25 of ropinirole and I don't know if it helps or if the symptoms just quiet down around 5 am. Ibuprofen doesn't touch it. I am afraid to increase my DA dose bc of I don't want to put gasoline on the fire (as in the Winkleman (I believe) webinar). Is anyone experiencing this symptom? Do you think this is beginning of augmentation?

I am so discouraged. I'm thinking of asking my dr to switch me to a non-DA drug. I also have some samples of Neupro - is this worth trying or am I just masking a problem?

Laura

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: New Symtoms - Need help w what to do

Post by ViewsAskew »

Hi Laura,

So sorry you're having these difficulties. I am almost positive that leg pain is a listed side effect of ropinerole. I'd suggest checking in with your doctor (and do a Web search to make sure I'm remembering correctly ) - you may need to switch. SO, definitely worth trying!
Ann - Take what you need, leave the rest

Managing Your RLS

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.

lhoff12085
Posts: 69
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: New Symtoms - Need help w what to do

Post by lhoff12085 »

Thanks.... I had some of it before but it's definitely a lot worse - especially my knees. I feel like I don't have a lot of strength in them which is worrisome. I'm too young for that. I hadn't thought of side effects..

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

Re: New Symtoms - Need help w what to do

Post by badnights »

Because you describe your primary sensory symptom as achiness, your first thought could be right as well - this new achiness could be augmentation. Hard to be sure. If you're augmenting, your regular evening dose of medication still works, but it doesn't last as long, and/or you start developing symptoms earlier (before you take it), or in more body parts, or you get more severe symptoms, or symptoms come on sooner after you become still. You might want to discuss this with a doctor who treats augmented WED/RLS; or learn as much as you can before bringing it up with an inexperienced doctor.

More technically, there are a few definitions of augmentation, and one of them is a list of criteria - for you to be augmenting,
1. All of the following must be true:
- you have had an increase in symptom severity as compared with when you started treatment
- the increase in symptom severity cannot be accounted for by other factors (change in medical status, lifestyle, natural progression of the disorder)
- there was a prior positive response to treatment
2. Also, either A or B has to be true:
A. persisting paradoxical response to treatment: RLS symptom severity increases some time after a dose increase and improves some time after a dose decrease; or
B. earlier onset of symptoms. This can mean either an earlier onset by at least 4 hours
OR and earlier onset by 2-4 hours accompanied by one of the following:
- shorter latency to symptoms when at rest, as compared to before treatment
- extension of symptoms to other body parts, as compared to before treatment
- greater intensity of symptoms, as compared to before treatment
- shorter duration of relief from treatment, as compared to before treatment
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.

lhoff12085
Posts: 69
Joined: Fri Apr 24, 2015 1:04 pm
Location: Sarasota, FL

Re: New Symtoms - Need help w what to do

Post by lhoff12085 »

Thank you Beth. I fit that criteria pretty well so it probably augmentation and maybe side effects as well. I've only been on it since Feb so it's happened quickly. My doctor is not experienced w RLS so you're right, I've got to do my homework to help him. Thank goodness for this organization providing that. I'm worried about coming off the Ropinerole. Any opinion on whether going from Ropinerole to Neupro is an good option or is it best to just get off of DA.?

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: New Symtoms - Need help w what to do

Post by ViewsAskew »

Tough question. Some docs would say to try rotigotine because it has less chance of augmentation. Some docs are starting to say that once you augment, it's time to switch.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

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

Re: New Symtoms - Need help w what to do

Post by Rustsmith »

I would guess that at this point you have two options. You can switch to an alpha-2-delta drug to see if that provides you with any control of your RLS. These help a number of people and do nothing for others. These drugs do not cause augmentation, so that is a definite plus if you are one that benefits. However, they can also come with some rather nasty side effects for others, so that are not the perfect alternative. The three drugs in this class are gabapentin, Horizant and Lyrica.

Your other option is to continue with a different DA, of which rotigatine is the logical choice. The time release nature of the patch helps reduce the chance or at least delay the time before you start to augment. It took me about nine months to augment on pramipexole and I lasted about 15 months on rotigatine. My doctor was expecting the rotigatine to work for longer than it did. Sticking with a DA would be easier on you in the short run because it would avoid the dopamine withdrawal issues, but the alpha-2-deltas could make more sense for the long term (assuming one of them works for you).

As for price, rotigatine (Neupro), Horizant and Lyrica are all still under patent protection and therefore can be quite pricey, even with insurance. Gabapentin is inexpensive.
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.

sleepdancer2
Posts: 222
Joined: Sun Jun 29, 2014 7:46 am

Re: New Symtoms - Need help w what to do

Post by sleepdancer2 »

As I advanced in augmentation, the pain in my knees, hips, legs and lower back increased. My interpretation was it was the accumulation of overuse - movements when the body should have been resting and being restored. I augmented on Mirapex then Ropinerole. I am fortunate to be one who has found use of a TENS Unit an effective treatment mode. Not everyone has had the same success.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Post Reply