Symptom Free

[Restlesssufferer]

Everyone is different, and what works for one may not for another. I suffered with RLS for so long, I can’t even remember how long. However in the past 5 years it had become unbearable. I wouldn’t sleep for days on end. I was depressed, tired, and thoughts of suicide starting dancing around in my pea brain. It was just that unbearable. I started seeing a neurologist about 6 months ago. It took a few months to find the right combination of medications but we finally did it. I take 1200 mg of Gralise which is an extended release gabapentin, and .5mg of pramiprexole. In addition to this I have purchased foot wraps from Restiffic. The wraps are the first drug free treatment for RLS that has been approved by the FDA. Check out the wraps on Restific.com. I am finally free of the insidious, unbearable, brutal symptoms of RLS that were ruining my life. I hope all find relief. It’s out there. Don’t give up and work closely with your doctors. If something’s not helping speak up, demand something else be tried. If the doctor won’t work with you find another doctor!! By the way, my insurance would not pay for the Gralise because my RLS is not one of the approved uses for it. The cost $1000+change a month. My neurologist directed me to a online pharmacy, Avella, and I now get the med for $10 a month.

[Hidden]

It's great that you've finally got relief for your RLS.

I hope however that you were made aware of the possible consequences of taking such a high dose of Pramipexole.

There's not too great a worry in the short term, but it's good to be forewarned of what might happen in the longer term so you can detect any problems earlier rather than later.

The main problems that arise with any Dopamine Agonist, such as Pramipexole are loss of efficacy, (it stops working), augmentation ( instead of relieving RLS it makes it worse) and Impulse Control Disorders, (such as compulsive eating and weight gain, shopping addiction, gambling problems or promiscuity).

The latter is a lesser risk but loss of efficacy and augmentation is quite common.

Unfortunately the higher the dose you take, the greater the risk. Certainly never let your doctor increase the dose of Pramipexole.

[Parminter]

Do you really mean 0.5mg pramipexole? That will certainly knock your RLS on the head, but it will also knock your brain/dopamine receptors. Please ask your doctor about this high dose - the latest suggestions are a maximum of 0.25mg.

Augmentation is real, common, and awful. Your brain might consider suicide again.

Please take care.

[Parminter]

Can you not obtain Horizant where you are? That is approved for RLS, and it sounds similar to Gralise (which I have not heard of before).

[Jumpey]

Pleased you have found relief. And I agree about being cautious with the DA. Also think about getting your ferritin levels checked and if necessary take an iron supplement to get it to around 100 if it is low. Good luck. X

[involuntarydancer]

I really hate to rain on the parade because relief from RLS is such a wonderful thing but the latest thinking is that dopamine agonists such as pramipexole can cause permanent damage to dopamine receptors (as well as all of the problems highlighted by other posters). I would be very loath to start one of these drugs in light of the current state of knowledge of experts.

Have you had your serum ferritin checked? RLS experts from Europe and the US released a paper in 2018 concerning the treatment of RLS and their recommendation is that unless serum ferritin can be raised to over 300 using iron supplements, iv iron should be used as a first line of treatment - before any prescription meds.

[LanaCSR in reply to involuntarydancer]

Do you have a link to that paper that recommends serum ferritin be over 300 for RLS? I need a way to convince my dr and ins co to go beyond the range for "anemia". Thank you!

[involuntarydancer in reply to LanaCSR]

sciencedirect.com/science/a...

I'm not very tech savvy so I hope this works.

I would go through and highlight a couple of salient statements for the benefit of your medical advisors as they won't want to trawl through the whole thing. Paragraphs 2.3.1 and 2.3.2 are useful as is the summary at para 5.11 and the flow charts under paragraph 8. Table 1 sets out the available products. The product most commonly used for RLS is Ferrinject (known in US as Injectafer) and the recommended dosage is set out in the study.

I have heard people say that it is important to actually hand a copy of the study to your medical advisor (rather than sending an email or a link). In your shoes I would also bring a copy of the recent study that links RLS with an increased risk of suicide (webmd.com/brain/restless-le.... I think that this may encourage medical advisors to take the condition more seriously.

[LanaCSR in reply to involuntarydancer]

Thank you so much!!