Is it me or did I just miss a decade? - Restless Legs Syn...

Restless Legs Syndrome

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Is it me or did I just miss a decade?

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ncbi.nlm.nih.gov/pmc/articl...

This 2006 article talks about augmentation and tolerance. It goes on to state that augmentation was rearing its ugly head in 1996 and was very clear to doctors in the field of RLS exactly what was happening to their patients on the dopamine agonists. The leader(s) in the RLS field, who ignored this inconvenient fact, and continued to prescribe away, at ever higher doses, over the past decade or TWO, allowed drug companies (that produced Mirapex and the like) to reap billions of dollars in profit that they never would have otherwise. I'm not a conspiracy theorist, but it seems that this whole augmentation issue really didn't come to the forefront until the drug companies got other drugs for RLS approved by the FDA. Coincidence?

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I agree, but Boehringer Ingelheim who is the company behind Sifrol writes in the folder that comes in the box with the drug (I do not know the english name) that you should not take more than 0,54 to prevent augmenation. I read it the first time 2001.

in reply to

Interesting. Then why did RLS docs continue to increase doses for patients?

in reply to

They do not have time to read all information, I think. We do all have to be very well educated about our desease and the medications so we can educate our doctors.

in reply to

My gripe isn't really with general practitioners. It is with the leader(s) in the field of RLS who write books and articles and claim to be experts.

in reply to

Swedish, see pages 1 and 2 and 14 of the attached newsletter. The page numbers are hard to see, bottom left I believe. It seems that certain pioneers in the field of RLS believed augmentation was rare, and though he/they recognized it, he/they would only treat individual patients for it, as it arose. This went on for years!!! It should not have. A systemic approach to preventing augmentation should have been assumed by these RLS leaders back in 2007 when the newsletter came out. If not earlier, my god, they're the leaders!!! Augmentation isn't some rare genetic disease, it happens with other drugs. I just wonder if the denial by the leader(s) in the field of RLS was motivated by drug company money.

rls.org/Document.Doc?id=1852

in reply to

I really do not know what to say because we didn't have the same situation here in Sweden and I do not look at this people as leaders. We do all have to try to find out information ourselves and sometimes it is very hard to found, but in this case the information has been awaliable for everyone in the folder in the medicine box. Many of us does not read that folder, but we should. Always.

gretakmac profile image
gretakmac

Very Interesting! Does beg the question...

Seems we know more than a lot of the professionals. Thank goodness for the internet and sites like this where we can share information and help each other. Has anyone tried Horizant? It is not available here in Canada but I don't think it is a dopamine agonist like the rest of them.

in reply to gretakmac

Hi no Horizant is not a dopamine agonist.It is I believe same as or very similar to Gabapentin but in slow release form so is probably in the anticonvulsant type of meds.I haven't used it as it is not available in the UK either.Normal Gabapentin did not help me but it does help some people. X

gretakmac profile image
gretakmac in reply to

Not available in Canada either, but thinking of getting it in US since we winter in Florida.

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