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How long before I should worry about augmentation?...

Posted: Mon Apr 29, 2019 10:35 pm
by jerrymeadlucero
I have been on 1 mg tablets nightly of ropinirole for over two weeks now. It seems to have helped some but not fully relieved my symptoms. With 1 mg of ropinirole and 600 mg of gabapentin the burning sensation in my legs is gone and they are less sensitive to touch but I still feel some muscle twitching, tightness and soreness. Unfortunately, the soreness and tightness in my muscles is there during the day as well and I am starting to take 300 mg of gabapentin during the day to deal with that.

What I am really looking for an answer too in this post is how quickly does ropinirole augmentation set in? Am I ok with sticking with this treatment for a few months at least to see if things improve? Am I risking augmentation by staying on ropinirole for say 3 to 4 months? I really need to get my life back to some semblance of normal. I need to start working again (Uber driver) haven't been able to for over 3 weeks because of this. I am supposed to travel out of state for a month from mid-June to mid-July for family matters and am fearing I need to cancel now. Plus my doctors (primary and neurologist) are reluctant to see me more than a few months apart so making quick changes to medications is hard.

Any guidance is very much appreciated!

Re: How long before I should worry about augmentation?...

Posted: Tue Apr 30, 2019 2:35 am
by Rustsmith
The first question is whether you have RLS or neuropathy. Neuropathy involves painful feelings near the surface of the skin whereas RLS involves discomfort that is much deeper in the muscles or it can even feel like it is in the bone. RLS also usually involves sleep issues, as in a form of insomnia that does not respond to normal insomnia treatments, such as sleeping pills or improvements in sleep hygiene. This is why RLS is classified as a sleep disorder rather than a movement disorder, even though both are involved. It is the problems with sleep that originally drove most of us to seek out treatment, not the discomfort in our legs.

As for how long before augmentation occurs, that varies between individuals. There are a very small number who can augment in a matter of days. The normal time is on the order of months or years. Some people go without augmenting for more than 10 years. Did your doctors run blood tests to measure your ferritin levels before starting you on ropinirole or tell you to take an iron supplement? Having your ferritin above 50 and better yet over 100 will help extend the time until augmentation occurs.

As for muscle twitching, that is not part of RLS. RLS involves an uncomfortable sensation that can only be relieved by moving. The questions that need to be asked to diagnose RLS can be found at http://irlssg.org/diagnostic-criteria/. You need to answer Yes to each of the questions. If even a single question is answered by No, then you don't have RLS.

Re: How long before I should worry about augmentation?...

Posted: Tue Apr 30, 2019 3:54 am
by stjohnh
Usually ropinirole works well and quickly for people with mild RLS. It can sometimes be used as a sort of diagnostic test, since nearly everybody with mild RLS gets good relief. The fact that you have only had slight relief suggests, as do your symptoms, that there is some other problem, not RLS. Check the link Steve sent and see how much of that description fits with your symptoms. RLS for most people starts gradually with mild symptoms slowly progressing over years. Symptoms can progress much quicker if precipitated by surgery, trauma, or iron deficiency.

Re: How long before I should worry about augmentation?...

Posted: Tue Apr 30, 2019 3:56 am
by jerrymeadlucero
Rustsmith, thank you so much for your reply. I am really desperate and depressed and any info is really welcome right now.

To answer your questions, on ferritin levels, I took a blood test a week ago. I have not heard back from my neurologist yet. I am going to call tomorrow to see if they have the results.

On neuropathy, this whole thing started three weeks ago following an EMG nerve test as I am diabetic (though well controlled for now, 6.5 A1C). The test was purely precautionary and found no neuropathy. But for whatever reason, the test, particular the needles in my calves, set off what I am experiencing now. Though I am told that is impossible. Though some of the symptoms are on the surface like the burning sensation I was getting before starting the drugs, most of the pain, tightness, pulling is deep in the muscles.

On the diagnostic tool, yes, I can answer yes to every question but always on "partially" or "usually" side of the question. For example, walking partially relieves the symptoms and generally feels better than sitting but does not relieve the soreness in the muscles in particular. And the symptoms are worse at night but some persist through the day.

I realize that this is not really the right place in the forums for this, but since I have already relayed much of my symptoms and gone well beyond a discussion of augmentation, I will post here a detailed history I wrote up today to try to explain to people what I am experiencing. Please excuse me if I am breaking board etiquette rules by posting it here...

Since early adulthood, I would get terribly painful muscle spasms in my calf muscles. Like most people, this was usually at night and I would wake up suddenly with a knotted calf muscle. I am terribly afraid of them because the pain is so intense and they are such a shock when they wake me up. Luckily even though their frequency has increased over the years I rarely experienced them more than twice in a year. However, since at least my early 30’s (I am now 49) I have had extremely sensitive calves and they will become tight and threaten to spasm at even the lightest touch by someone other than myself. If I go for a massage I have to warn the masseuse not to touch me below the knee or above the ankle for fear of getting a muscle spasm. I have also noticed over the years, especially more recently little rippling feelings in my muscles, including the top of my thighs. I can actually see it ripple occasionally. And occasionally in the last 2 years or less I would feel like something is poking me in the leg on my calf or thigh. I would check for something on my clothes, maybe a biting insect, but nothing. All of this, despite my deep fear of muscle spasms, was really a minor annoyance as the actual spasms happened at most a couple of times a year and the rippling and other weird muscle feelings were easy to ignore.

On April 9th I went to a neurologist for an EMG nerve test. I have type 2 diabetes and have been having occasional annoying itching on the bottom of my foot once and awhile that wakes me up at night and often bothers me during the day, especially when I am driving. My doctor had some concern over possible diabetic neuropathy from diabetes hence the test. When the technician let me know he needed to insert needles in my muscles for the muscle portion of the EMG test I warned him about my sensitive calf muscles. I had no trouble with the needle in the other locations on my leg, but as I expected, when he inserted them in my calf and turned on the current my calf muscle immediately tensed up and threatened to spasm. I eventually had to ask him to end the test earlier than he wanted because it was bothering me so much. I have been living in hell ever since that day.

When I left the neurologists office my calves were tight. I had to walk around for about an hour trying to loosen them up before I felt I could drive home. On the drive, they were twitching and threatening to cramp. I assumed that day all I needed was time to recover from the test. I figured by the next day at the latest my legs would be back to normal. But I had troubling sleeping that night due to the twitching, tightness and fear of cramping in my calves. Was only able to sleep a few hours. Next day it was still there but I did my best to go on with my normal routine. I am an Uber driver and so the next night I went out to work but could only work a couple of hours as I kept having the twitching, cramping session and felt I needed to stop the car and stretch my legs. Walking and stretching my legs did improve the feeling for a while each time. The next few nights I kept having trouble sleeping, usually getting about 3 maybe 4 hours in the night but in half-hour segments as I kept waking up. This went on until by Sunday, 5 days after the EMG test which seemed to start it all, I couldn’t stand it anymore. I had so little sleep all week and the tightness, twitching and cramping feeling had moved up from my calves to the back of my thighs. I could no longer sit comfortably at all. Only slow walking provided relief. That night I went to the emergency room. They gave me a blood test but found my electrolytes, potassium, magnesium, all that stuff was OK and I wasn’t dehydrated. They gave me two days supply of the muscle relaxer Flexeril and sent me home. I still did not get much sleep and the drug was only mildly helpful at best. The next day Monday I contacted my primary care doctor. She started me on 1 mg of Ropinirole which I have been taking every night since. It has helped a bit perhaps but has not completely relieved my symptoms. The pain in my thighs soon became worse than the twitching and feeling of cramping in my calves. The backs and the insides of my thighs feel bruised and make it hard to sit down. The skin on the surface often feels like it is burning on both the thighs and the calves. I visited the neurologist again a week later and he increased my gabapentin nightly dosage from 300 mg to 600 mg (I had been taking the 300 mg of gabapentin for months already to try to relieve the foot itching phenomenon but it made no difference). He told me the EMG nerve test had nothing to do with it and I had restless leg syndrome. The 1 mg of Ropinirole and 600 mg of Gabapentin a night have helped, especially with some of the twitching in the muscles and the burning feeling. But the bruised feeling in the muscles on my thighs and the tightness in my calf and thigh muscles is still very much a problem.

In trying to figure out what could have caused all this outside the EMG nerve test I considered other changes I had recently made in my life. The only other significant change was two weeks prior to the nerve test my psychiatrist who I started seeing over mild depression and anxiety symptoms had prescribed for me 50 mg of trazodone at night and Bupropion XL 150 mg during the day. I thought perhaps they might be causing the problem so I stopped taking both. But that seemed to make no difference. The neurologists blames my problem on the Trazadone, but I stopped taking that weeks ago and I still have the symptoms. And everyone else I have spoken too (psychiatrist, several pharmacists) and everything I have read online indicate that Trazodone is not a trigger for RLS and can actually help. Regardless I am staying away from it given the neurologist recommendation.

At this point, it seems unlikely however that the trazodone or the bupropion (Wellbutrin) was the cause of my problems. The neurologists insists the EMG nerve test is also not to blame and is coincidental. So I don’t understand what caused all this, why it is persisting and why the medications I am taking for it (gabapentin and ropinirole) seem to be only mildly effective. The psychiatrist has also prescribed 15 mg temazepam tablets for sleep. They work wonders. I have had them for 6 days now but only used them twice as I am so fearful of the dependence/addiction issue. But the two nights I did I actually got 7 hours sleep!

My biggest question is still is this RLS or is this something else?

I know these symptoms match RLS…
Twitching, rolling feeling in the muscles
Feels better when I walk and move and stretch them, rather than when I am at rest
Worse at night

But these aspects do not seem to match RLS from what I read…
Tightness in the muscles that requires stretching to relieve
Cramping
Bruised sore feeling in the thigh muscles, almost like I have been punched in the leg
Soreness in the tendon area behind the knee
This sudden onset of symptoms that occured all at once and has not diminished for 3 weeks

I am desperate to know if this RLS or something else. Does RLS come on so suddenly like this? Is it this painful with the bruised, sore feeling as well as the tightness and the twitching in the muscles? Is this my life from now on?

Re: How long before I should worry about augmentation?...

Posted: Thu May 02, 2019 1:58 pm
by badnights
Based on your description here, I change my mind about the situations you describe in your other post -

Re: How long before I should worry about augmentation?...

Posted: Thu May 02, 2019 2:03 pm
by badnights
I have put my thoughts in your Topic in the Just Joined Forum.

It is easier to keep track of people's responses, and easier for other people to follow the story, if you keep everything in one place. But not essential.

Re: How long before I should worry about augmentation?...

Posted: Fri May 03, 2019 3:57 am
by jerrymeadlucero
Good point Beth! I will focus on my post in the "Just Joined" section moving forward I think. And apologies to all if I have been overdoing it with posts in multiple sections of the forums.

Re: How long before I should worry about augmentation?...

Posted: Fri May 03, 2019 5:04 am
by badnights
No apologies needed, lots of people do it. You are a bit complicated so I mentioned it. Anyway, we're a small community here, as far as bulletin boards go, so you'll have much the same audience in every Forum. I'll add more in the Just Joined soon.

Re: How long before I should worry about augmentation?...

Posted: Tue May 07, 2019 11:21 pm
by ViewsAskew
jerrymeadlucero wrote:Good point Beth! I will focus on my post in the "Just Joined" section moving forward I think. And apologies to all if I have been overdoing it with posts in multiple sections of the forums.


As Beth said, no apologies needed. It is for your benefit, ultimately, as it ensure no one misses something and says something they wouldn't have said had they known, so that you get a better response and the help you need.

Re: How long before I should worry about augmentation?...

Posted: Mon Jul 01, 2019 1:58 pm
by gfischer4
Hello, What is Augmentation? Tried to find an explanation?

Thank You Gene

Re: How long before I should worry about augmentation?...

Posted: Mon Jul 01, 2019 3:04 pm
by Rustsmith
Augmentation is the situation where a dopamine agonist stops helping control RLS and starts making it worse. It is a medication "side effect" that is specific to RLS and the use of dopamine agonists. The only way to "treat" augmentation is to stop taking the dopamine agonist, which can often be very difficult because many doctors do not know about it or how to set up RLS treatment for someone who is experiencing augmentation.

Signs of augmentation include:
1. Urge to move symptoms start earlier in the day. At first it may just be late afternoon, then early afternoon and eventually pretty much 24/7.
2. Movement urges can extend beyond the legs to arms, neck, torso, etc. Pretty much any muscle group can get involved.
3. The time between when you start to rest and the onset of movement symptoms decreases until you get to the point that they begin as soon as you sit down or try to lie down in bed.

To find out more, take a look at the posts in our Augmentation forum.

Re: How long before I should worry about augmentation?...

Posted: Mon Jul 01, 2019 6:24 pm
by badnights
In addition to the signs Steve wrote, a fourth sign is that symptom intensity increases.

The dopamine agonist medications used most for WED/RLS are ropinirole (trade name in North America is Requip) and pramipexole (Mirapex). Another dopamine medication, not a dopamine agonist, causes augmentation even faster than the dopamine agonists, and that's levo-carbidopa (Sinemet).

Augmentation is horrendous. Most doctors still have not heard of it, so they treat your worsening symptoms with an increase in your prescribed dosage, which causes the augmentation to get worse, which leads to another dose increase, and so on. By far the most visits to WED/RLS specialists are patients whose disease has been augmented by ignorant doctors meaning well.

Some people take dopamine agonists for years before they augment. Others (like me) augment in under a week. The lower your serum ferritin, the sooner you will augment. And the higher your dose, the more likely you will augment.

To avoid augmentation, if you are taking a dopamine-type medication (that is, a dopamine agonist or levo-carbidopa),
1. keep the dose as low as you possibly can (and consider taking a break from it for a week every couple of months, perhaps using a medication from the anticonvulsant class, like Horizant or Lyrica); and
2. make sure you are getting extra iron to treat the brain iron deficiency that underlies WED/RLS. Brain iron can't be measured by any simple test, so as a proxy, we use the concentration in the blood of ferritin, which is a protein used to store iron in all the body's tissues. Low ferritin in the blood correlates with a higher chance of augmentation. Not only that, low ferritin correlates with worse symptoms.

If your doctor confirms that you're not at risk of iron overload, and your ferritin is below 100, supplementation with oral iron might help. If it's below 75, supplementation will probably help, and if it's below 50, almost definitely. The most commonly used supplement is ferrous sulfate 325 mg, which equates to 60 or 65 mg of elemental iron. Take one or two with 500 mg vitamin C to aid absorption, assuming your doctor says it's OK.

Re: How long before I should worry about augmentation?...

Posted: Tue Jul 09, 2019 8:17 am
by Bridgercan
So question for the community: has anyone augmented on the Neupro patch, and if so, how did you go off of it?

After taking it for ten years, I augmented on pramixepole a year ago. My doctor at the time told me to stop taking it and prescribed 20mg of OxyContin which really wasn’t effective. I writhed for hours on end and began taking kratom to get a bit more relief. In addition I realize now I augmented on Requip about eleven years ago and didn’t know then what the heck was happening.

I’ve been on Neupro patch almost a year, going up by 1mg every few months. I’m up to 4mg, and my Mayo doctor wants to raise it to 5mg and get me off the 5mg Oxycodone I take. In addition to the patch, I take Horizant ER 600mg 1x/day. Each drug on its own does not reduce my symptoms. The literature I’ve come across recommends 4mg Neupro patch as the highest does for RLS.

A year ago my serum ferritin was 99; I had a course of IV iron treatment. It did nothing for me. Last week my ferritin level came back at 115.

I’m reluctant to go on a 5mg patch. I expressed my concerns in an email to the Mayo doctor, but she can take days to get back to me. So I’m kind of stumped as to what to do next. I’m really considering trying another doctor, but it could take months to get an appointment...ugh. I’d like to hear if anyone else has been in similar circumstances.

Re: How long before I should worry about augmentation?...

Posted: Sat Aug 10, 2019 7:37 am
by badnights
I'm so sorry we didnt see your post earlier. People have definitely augmented on the Neupro patch - Ann who posts as viewsaskew is one.
I fully support your inclination to not increase your dose, and to seek another doctor. Meanwhile, bring your doctor some information about augmentation and tell him it's happening to you. Your reasons should be clear, though. First, symptoms worsening fast enough to need a 1mg / few-months increase is well beyond what would be expected from "natural" progression of the disease. And one or more of the following should also be true: your symptoms are starting 2 or more hours earlier in the day than before the patch; symptoms have spread to your arms or other body parts; and symptoms start up right away when you sit or lie down instead of waiting 5 minutes, or they start after 5 minutes instead of 30, or similar such change. These are signs of augmentation, and as you know, it is not appropriate to increase dosage of a dopamine agonist for an augmenting patient.

You've been through it. You don't want to go through it again.

Are you presently taking iron? You probably should be. Some of us need our blood ferritin concentration to be well over 100 to reduce symptoms. If you only had one infusion, it was probably not enough to raise your brain iron concentration adequately. I think the protocol that works best involves a number of infusions - I don't know how far apart they're spaced - and a period during which you might not see the benefit. But eventually you do feel it (if you're among the roughly 75% who will). Then comes a long period of relative calm until your symptom severity increases again; then you need another round of infusions. (Others can provide more info on this.)

So your route to happiness might involve more iron infusions. A knowledgeable doctor would be a real help, and worth starting the process for now.

EDIT: a quote from Holland explains the infusion route better:
stjohn wrote:The first treatment usually lasts a few months. Subsequent treatments longer. Average after the first one or two is about a year, up to two years. Not everybody responds, some have no improvement at all.

This is the main IV iron thread if you want details. viewtopic.php?f=4&t=10227