New Member - Medication Issues

[Aviatrix]

I'm so glad there is a board for WED/RLS. I'm 55 and have been struggling with WED/RLS for many years. I have clinical depression and generalized anxiety disorder. I'm taking 200mg of sertraline and 150mg of buperion each morning. In the evening I take 900mg of gabapentin to help me sleep. I was taking .25 mg to 1 mg of mirapex for WED/RLS. Over the past year my WED/RLS symptoms have increased and can occur any time from early afternoon.

My doctor has changed my WED/RLS medication to ropinirole and ramped it up over 2 months to 3mg. The plan was to eventually get to 4mg each day. She has also added 324mg daily of ferrous gluc. My insurance company will not cover the 1mg ropinirole pills anymore. So, I've been on the 4mg pills for 3 weeks. I'm nauseated, sometimes vomiting, and very tired 45 minutes after taking the 4mg dose of ropinirole. I thought the negative symptoms would eventually subside, but they have not. Has anyone else run into this?

[ViewsAskew]

Please read about augmentation. I'd just about bet that this is the issue. While they did suggest higher doses of ropinerole and pramipexole originally, the most informed doctors no longer use dosages nearly that high. For pramipexole, the max is .25 mg now! In the book, "Clinical Management of Restless Legs Syndrome", the authors (4 well-respected RLS/WED doctors)suggest a max of 1.0 mg per day of ropinerole.

When you took the pramipexole, you likely augmented. That increase? That was augmentation, not the disease getting worse. I went through the same thing - many of us here have.

I highly recommend the aforementioned book. It helped me find doctors who were in line with the most current therapy.

Anxiety and depression are so common with WED. And, it can be so hard to treat because drugs for one can make the other worse. I feel for you - you're in a tough spot.

[badnights]

There's also a good book (getting a little dated now) by Buchfuhrer, Hening, and Kushida; interestingly enough, Google books used to let you read this online for free, but it must have been a mistake, because I can't anymore :
http://books.google.ca/books?id=hFNifHw ... da&f=false
It's full of good info, including this description of augmentation:

"Severe augmentation invariably causes such distress that people are desperate for relief. Increasing medications further provides little relief and may ultimately intensify symptoms. Stopping the drug will eventually relieve the augmentation, but this may take some time - leaving the patient in great distress. The time it takes for the effects of augmentation to wear off can be quite variable, lasting several days to weeks. Opiods can be used short term to control the intense RLS symptoms in these cases. There are other options for therapy once the effects of augmentation have resolved. Another dopamine agonist may not reproduce augmentation ....."
From: Buchfuhrer, Hening, and Kushida, 2007. Restless Legs Syndrome. American Academy of Neurology Press, Quality of Life Guides, Demos Medical Publishing, New York, p. 106.

Augementation is a paradoxical worsening of symptoms caused by the dopmainergic drugs (Sinemet/levo-carbidopa, Mirapex/pramipexole, Requip/ropinirole). It is very likley to happen in people with low ferritin levels, and is more likley at higher doses of the medication. It is also more likely the longer you've been taking a dopaminergic drug. Once you have it, increasing the dose increases the augmentation. Sometimes it can be controlled (for a while anyway) by an additional, earlier dose. If you have augmenation, your regular evening dose still works, but you start developing symptoms earlier (before you take it), or in more body parts, or you get more severe symptoms.

It seems your doctor is aware of some of this but does not have a deep understanding of the complications, and is not aware of the latest recommendations. As Ann said, the maximum dose recommended by specialists is 1 mg ropinirole, quite a bit lower than the FDA's maximum dose.

Another thing your doctor missed was the need to wean you completely off one DA before starting you on another. The reason is this: withdrawal from a DA, especially if you've been augmenting, consists of worse WED symptoms. (Your doctor might not understand this because Parkinson's patients can stop the medication without getting worse Parkinson's symptoms. It's novel to WED that this happens.) It's also a fact that higher doses of DAs increase your chances of augmenting. So if you have elevated WED symptoms from withdrawal from the first DA, you will need high doses of the second DA to cover the symptoms - which means you could very well start augmenting on the second DA right away.

Finally, although your doctor seems to be aware of the importance of iron, I think she missed the connection (recent research) between low ferritin, taking a DA, and augmenting: that is, people with ferritin below 100 ng/ml are at a much higher risk of augmenting on a DA than people with high ferritin. So probably you should not be taking a DA until
your wtihdrawal is over, and
your ferritin is over 75 or better still, over 100.

Be sure to ask to be tested again in 3 months to see if the iron is having an effect. Most people have poor results with the gluconate, and better with the sulfate or fumarate, though they also have more of a tendency to cause abdominal pain.

Your doctor needs to know a bit more about the latest research on augmentation and how to treat it. You can help her by downloading one or two papers, printing them, and bringing them to your next visit. Tell her you were directed to those papers, and ask her if she can take a look at them and tell you her opinion of them - do they contain useful information, might they help her decide how best to treat you? Some of us have done this and the doctors usually react well. They can't possibly know everything there is to know about every disease, so it's not that crazy to do. Here is an important excerpt from paper, that you might want to highlight in the copy you give her (from Buchfuhrer's 2012 paper):

Although the FDAapproved,
maximum doses for ropinirole and pramipexole
are 4 mg and 0.75 mg, respectively; many physicians exceed
this dose, especially when treating daytime symptoms that
may require 1 or 2 additional doses per day. However, after
10 to 15 years of experience with these drugs, concerns
regarding augmentation of RLS symptoms by these drugs
have made many RLS experts rethink the doses used to treat
RLS, and even whether these drugs should be first-line
drugs of choice for this disease. Due to concerns regarding
augmentation of RLS, In the opinion of this author and
several other RLS experts, the maximum doses of dopamine
agonists should be much lower than the approved FDA
doses (such as 0.25 mg for pramipexole and 1 mg for
ropinirole).

***************ferritin and augmentation links
Buchfuhrer's 2012 paper, a good review of treatment, including comments on ferritin and augmentation:
viewtopic.php?f=5&t=4749&p=66971#p66971

Three papers that deal with ferritin and augmentation
viewtopic.php?f=5&t=6532&p=61601#p61601