Restless Legs Syndrome (RLS) Discussion Board

It is very difficult for me to find a doctor who would prescribe opioids. When I mentioned opioids to my pharmacist, he did not react positively.
I am on the patch as it is said to be a way of getting off an augmented short-acting DA (pram) without going through the hell of dopamine withdrawal. Using
a 2 mg patch helped me to reduce the pram from .50 mg per day to .375 mg without much trouble. However, going from .375 mg to .25 mg
(with the patch increased to 4 mg) has been more problematic. Considerable rebound starts to happen around 3 a.m. to 4 a.m. and continues
until I get up between 7 a.m. and 8 a.m. I imagine the symptoms will get worse as I keep reducing the pram.
Fortunately my days and evenings are free of rls symptoms. My GP is supposed to be arranging a meeting with a consultant pharmacist to sort this all out.

An update on my treatment.

While I was just on a DA (first pramipexole and then Neupro), I had continuing issues with insomnia. The issue was not that my legs were causing problems, I just could not all asleep. I had been taking a small dose of gabapentin as treatment for migraines. At my first appointment with Dr. Ondo, he dramatically increased my night time gabapentin dose. From that first night, I had NO problems falling asleep. In fact, I had to plan to be in bed an hour after taking it because I was going to fall into a deep sleep at that time. Unfortunately, I would wake up wide awake at 4A with no chance of going back to sleep. Then it was 3A, then 2A. I was taking 900mg at night and tried 1200mg, but saw no change. Also, as the time kept getting earlier the accumulated lose of sleep was starting take a toll. I did not feel sleepy during the day, but started to experience short sleep attacks where I would quickly need to sleep for 5 to 10 minutes. If I tried to fight it, I would start blanking out for a second or two, obviously not a good thing while driving!

So, this week Dr Ondo switched me from gabapentin to Horizant. He said that the Neupro was doing an adequate job in controlling the urge to move part of my WED, but that apparently I was adsorbing enough gabapentin to get me through the night and that going to a higher dose would not improve matters because increasing the dose would not increase the amount getting into my blood stream. Horizant is adsorbed differently and is an extended release drug, so hopefully I will start getting more than 4hrs/night of good sleep. The only issue that I see right now is that this puts me into a situation of using two drugs that both max the co-pay on my insurance. That isn't a particular problem for me, but it isn't exactly what I would wish for in the long term.

So, more to come.

Hope his solution works.

Good luck.

As opioids are not an option where I live, I am attempting to get off pram. by using Neupro (4 mg.) I was led to believe
the transition would not be all that difficult because both are dopamine agonists. It has not been so for me. It has
been increasingly difficult, the more I lower the pram. For the past two nights, I have been on .125 mg of pram (titrated
down gradually over a period of weeks from .5 mg) My body has been letting med know that it is not pleased with
less pram

Do I understand that as you have reduced to .125mg, you have titrated up to 4mg neupro.
How were you doing at the level just above the .125mg?
Is it possible to go back to that level for a few days and then reduce by a lesser amount.

I recall a member talking about shaving pieces off a pill in order to reduce at a gradual enough rate.

Further update on Horizant. It did not do anything beyond what I was getting with regular, generic gabapentin. So the Horizant experiment is over.

Since the only difference between the two is the way that they are absorbed in the intestine, I guess that I am part of the group who are able to absorb gabapentin fairly easily and do not need the extra help that Horizant provides in that respect. Since the cost of Horizant is many times the cost of gabapentin, I will stick with gabapentin and see what Dr Ondo suggests next.

Polar Bear wrote:Do I understand that as you have reduced to .125mg, you have titrated up to 4mg neupro.
How were you doing at the level just above the .125mg?
Is it possible to go back to that level for a few days and then reduce by a lesser amount.

I recall a member talking about shaving pieces off a pill in order to reduce at a gradual enough rate.

Last night was very bad. I think I will go back to 4 mg. of Neupro and .25 mg. of pram. I am wondering if
I am augmenting on Neupro.

So what Neupro and pram dosages have you been on.
You had reduced to .125mg pram but I wasn't sure what dosage neupro you were actually taking.

You say you are considering going back to .25mg pram and 4mg neupro.
Would you consider increasing one of them i.e. the Neupro to see what difference this makes, before increasing both.
Could you consider not increasing the pram in the meantime, as this is the one you are trying to get off.

What a difficult journey this is, At times we feel at sea, what keeps one sufferer afloat just lets another sufferer sink.

Right now, I only have 2 mg. patches. As I take 4 mg a night, this means 2 patches. Increasing this
would mean going from 4 mg to 6 mg.or 3 patches. What I need to do is to get 6 mg. patches. However,
I am concerned that 6 mg might bring on augmentation if I don't have it already. This is why I want to
check with my rls specialist before going to 6 mg. However, he has not returned my phone call about
this.

If you are already on the 4mg patches it would be a big jump to go to 6mg without medical supervision.
We are all very fearful of augmentation.

The cold shower on the legs can sometimes give temporary relief, for others it takes a hot shower.
A bath using epsom salts works for some. Some of us get no benefit from these home methods.
We are all so different.

I do hope you hear from your specialist, especially as it is the weekend.

[quote="Polar Bear"]If you are already on the 4mg patches it would be a big jump to go to 6mg without medical supervision.
We are all very fearful of augmentation.

I think I have already augmented on Neupro. I thought it was relatively easy to get off pram. by using a
longer-acting DA like Neupro. This started off by working quite well but now my symptoms are worse.
I hardly get any sleep. I'm often flailing around like a crazy person. The only good thing is that I am okay
during the day. WED has never been a day-time issue. If one has two augmented DAs, is it more difficult
to get off them? How does one do this if one cannot gain access to an opioid? Pregabalin or Gabapentin
are the usual agents where I live to get one off a DA, but are they enough to cover the symptoms??

To be honest, I believe that to get off the DAs will take more than the Gabapentin type medication, although it may ease the pathway somewhat, depending on the dosage prescribed. Tramadol is another option which might be easier to get from your doctor.

I always advocate this book, it is easy reading and worth having to discuss with your doctor. (I am at risk of boring everyone but truely believe it is worth the expense)
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

This is an extract from a document of Dr Buchfuhrer with regard to WED/Augmentation and opiods. The same Dr B who is a co-author of the book mentioned above.
. Patients with moderate to severe RLS typically require daily medication to control their symptoms. Although the dopamine agonists, ropinirole and pramipexole have been the drugs of choice for patients with moderate to severe RLS, drug emergent problems like augmentation may limit their use for long term therapy. Keeping the dopamine agonist dose as low as possible, using longer acting dopamine agonists such as the rotigotine patch and maintaining a high serum ferritin level may help prevent the development of augmentation. The α2δ anticonvulsants may now also be considered as drugs of choice for moderate to severe RLS patients. Opioids should be considered for RLS patients, especially for those who have failed other therapies since they are very effective for severe cases. When monitored appropriately, they can be very safe and durable for long term therapy. They should also be strongly considered for treating patients with augmentation as they are very effective for relieving the worsening symptoms that occur when decreasing or eliminating dopamine agonists.

Polar Bear: My WED doctor finally returned my call this morning. When I told him that Neupro and pram
were giving me such a terrible experience, he wants me to go on Lyrica. The side effects of this drug
don't sound too jolly but what choice do I have? My son thinks I should try marijuana. BTW, I already
ordered Dr. B's book earlier today

I haven't personally used Lyrica, or any of the anti convulsants.
We do have members who have tried Marijuana...
Searches will bring

You are likely to need guidance to switch from the DA (ropinerole) to Lyrica.
Yes, I know the side effects of Lyrica are rather alarming. It's a good idea to be aware of them and be alert. Of course this can be said of most medications.
And also, we all react differently to different medications and may experience few or no side effects.

It is the middle of the night here in the UK and I will go to bed now forever in hope of more than around 4 hours sleep.

Please keep us updated as to your change over to Lyrica and your progress, good luck.