My email to Karla Dzienkowski, who is Executive Director of the Restless Legs Syndrome Foundation:
Recently a post on the forum indicated that Dr. John Winkleman has set up a site for health professionals to learn about RLS at rlscurbside.org/resources/. Naturally I went out there and was quite disturbed about a number of things I found , but the link under Resources --> Symptoms and Diagnosis leads to the RLS Foundation site where under Treatment --> Medications it says "the FDA has approved 4 medicines to treat RLS - Ropinirole (Requip), pramipexole (Mirapex), gabapentin enacarbil (Horizant) and rotigotine (Neupro). And there is a line of space between each making them stand out. While this is true it just adds "several drugs approved for treatment of other medical conditions have undergone clinical studies with RLS patients and provide symptom relief when used "off label." Anyone reading this, doctors or patients, would think that DAs are the correct medication or Horizant which is expensive and not appropriate for most since it lasts 24 hours. I know this is not what the RLS Foundation would want doctors or patients to see. And the "several drugs . . . off label" are not even mentioned even though they are the first line treatment for RLS. Please, please, please consider changing this.
Her response:
Thank you for taking the time to send me a note. We are thankful to have such caring and compassionate individuals like you who are active in the RLS community. Our new website is currently under construction and we are in the process of revising page content. I have shared your concerns with the team.
Linda, like you, I am excited that Dr. Winkelman has created an online platform where doctors worldwide can seek guidance in the care and management of RLS patients from renowned RLS experts. Physician education is a key step in achieving better patient outcomes and quality of life.
Again, thanks for reaching out and for your continued membership and support.
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SueJohnson
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I didn't feel that way. She said they were redesigning the site and in the process of revising page content and she shared my concerns with the team. I guess we will see when the new website goes up, but I was encouraged and nothing ventured, nothing gained. I know they don't believe in prescribing DAs. Dr Buchfuher, Dr Berkowski and Dr Early among others are on their Scientific and Medical Advisory Board.
They generally need to be careful to say what is 'true' ie the FDA has 4 approved medications. They could go straight to "many RLS physicians do not believe DA's are still first line medications" but have legal and other strict correctness rules they need to follow, whereas what we want them to do is scream "dont prescribe DA's". There are RLS doctors that prescribe DA's and may not want the Foundation to be saying how they practice is incorrect.
I have just drafted an information sheet that I plan to use in my coming RLS clinic. Maybe I will post it here to get some comments on it.
There is no problem in saying what the FDA has approved but it was emphasized by each medicine being on a separate line with a blank line between them. Instead it could all be in in a sentence.
In the US there are no legal and other strict correctness rules they need to follow,
But since I wanted to give you a link to that page so you could see what I meant, I discovered they have changed it !!!!!! see rls.org/treatment/medications
That's great you have developed an information sheet !
Little by little we will get the information out and help educate the doctors.
I came off pramipexole as it began to make my restless legs worse due to the start of augmentation. I am currently on a low dose of morphine 5mg and whilst it does not completely relieve the condition its has less side effects and does not appear to cause augmentation.
It might be too early for my brain to know what “DA” is you used in your post?
I too use Horizant. My pm doc prescribes it to me for a nerve inhibitor. I’ve been taking Horizant for 8 years. I take 1200mg per day EVERYDAY. I can’t take regular gabapentin because the negative side effects are just too much. I have tried and can’t take lyrica for the same reasons. Brain fog would be putting it mildly as a side effect for both.
My doctor then put me on Horizant; we started out with 300mg in the morning and the same at night. My mg increased to 1200mg/day split between morning/night. The side effects of gabby are not like lyrica or gabapentin when I take Horizant. I can function more normally on Horizant.
I do have some frustration with the side effects but I can also function. 🤷♀️
Yes, it’s very expensive but my body responds to it more with less side effects.
DA stands for dopamine agonist which are medicines that used to be the first line treatment for RLS (ropinirole and pramipexole are examples) but which no longer are because of the danger of augmentation.
What are you referring to when you ask me "What was your question? "
I received a notification that you had a question about Horizant and maybe I could answer because I take it. Health Unlocked does that. So I was looking for a question about Horizant if you had one. That’s all.
health unlocked. I guess because I uploaded I take it and talked about gabby, lyrica and Horizant it sends me a notification of whoever’s post and I might could answer some questions. Usually there is a question. 😂 It’s awesome I got to read something that wasn’t a question though. For awhile I was getting a notification pretty often. I always respond because I never know if I can maybe answer someone’s question.
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I got my paper and I found at least one answer
Informative video on updated RLS guidelines
More About My “Overall Body” RLS
Just musing about as yet unknown cause of RLS and the effect of treatments
And now for the good news
