Is augmentation not disease progression? According to this article it is not.

[Little_apple]

This contradicts what else I have read.

“A major side effect of dopaminergic drugs is augmentation (progressive worsening) of RLS symptoms, which can come in many forms. Symptoms may appear earlier in the day, they may become more intense, they may spread to other parts of the body, or higher doses of the drug may be needed for it to remain effective. These side effects could be mistaken for a natural progression of RLS, but they are typically reversed once the patient stops using the drug. Adjusting the drug’s timing and dosage  may reduce augmentation.”

I’m confused by, “these side effects could be mistaken for a natural progression…”

sleepfoundation.org/restles...

[Madlegs1]

It simply means that the medications are failing, and so not controlling the symptoms.

Not that the RlS is getting worse as in a progression of a disease.

However, after augmentation, RlS can be much worse for people, for quite a while.

[JamesCW1957 in reply to Madlegs1]

Hello, Madlegs1,

You mention RLS symptoms can remain worse after augmentation for quite a while. I realise every individual may vary in how long it takes for RLS symptoms to "revert" back to their "normal" level after weaning off a dopamine agonist- but, is there some information re how long RLS sufferers have found it can take for symptoms to settle down. Thanks

[Madlegs1 in reply to JamesCW1957]

A long time- months.

Check out DAWS.

[SueJohnson in reply to JamesCW1957]

It can take months, but for most it probably takes around a month. However for a few it can take for up to year.

[Little_apple in reply to SueJohnson]

Is the biology of augmentation understood? I have not found it elucidated anywhere. It is bizarre that something, in this case dopamine, can mask symptoms initially providing therapeutic benefit yet make symptoms worse after usage. I suspect that the augmentation is not completely reversible, that return to baseline is actually the new worsened baseline.

[SueJohnson in reply to Little_apple]

Perhaps this will explain the latest thought as well as mention a drug they are researching to see if it helps with augmentation. rlsfoundation.blogspot.com/...

[ChrisColumbus]

See the Pinned post and discussion that links to an article on RLS UK:

healthunlocked.com/rlsuk/po...

(This forum is UK/European based, but we have members from all over the world including many from the US)

[Little_apple in reply to ChrisColumbus]

I’ve read your link. Thank you. And I’ve sought other info. Being daft perhaps but to say the meds are no longer working and the RLS is worse sounds like the syndrome has progressed, worsened. I’m trying to understand to evaluate my best course of action. I slept 1 hour tonight.

I hope I understand this correctly. The augmentation is a temporary worsening? Once getting off the med (torturous process) over time, often the RLS will reduce bc the med was making it worse? Am I getting it? Thank you for your patience

The sleep deprivation is taking its toll

[SueJohnson in reply to Little_apple]

Yes your interpretation is correct. Your symptoms will revert to what they were before you took the medicine.

[Little_apple in reply to SueJohnson]

Thank you! I am suddenly dumping so many questions on this forum because RLS crept in initially but suddenly has gotten much worse. Do you have an opinion on Citicoline or Huperzine A for RLS? In PD, it’s not widely known but Citicoline reduces the need for dopaminergic therapy yet reduces PD symptoms.

[ChrisColumbus in reply to Little_apple]

Sue has a huge body of information on RLS so will wait for her reply.

Citicoline was just one of a number of possible supplements that was mentioned in the context of possibly helping with dopamine agonist withdrawal syndrome a couple of years ago (without a positive response from anyone here at the time):

healthunlocked.com/rlsuk/po...

[SueJohnson in reply to Little_apple]

Both may increase dopamine in the brain.

[Little_apple in reply to SueJohnson]

Yes, but, it’s complicated. I have been reading more about it. I used to take it. I stopped but I will resume. The second article is excellent. The source looks questionable but it’s not. The company was founded by a man with a PhD from Oxford who I listen to.

“CDP-choline activates the biosynthesis of structural phospholipids in the neuronal membranes, increases cerebral metabolism and acts on the levels of various neurotransmitters. Thus, it has been experimentally proven that CDP-choline increases noradrenaline and dopamine levels in the CNS.”

pubmed.ncbi.nlm.nih.gov/870...

that citicoline was originally used as a medication for ischemic stroke patients because it can repair neuronal membranes damaged from the lack of oxygen to the brain.5 An acute ischemic stroke quickly cuts off blood flow to the brain, meaning it doesn't get enough oxygen to function properly. In a study of 272 stroke patients, 54% showed improvements in brain function in as little as two weeks when supplementing with citicoline.18

hvmn.com/blogs/blog/supplem...

[DataRN in reply to Little_apple]

According to Dr. Winkelman who is a leading RLS specialist and Chair of the International Restless Legs Syndrome Study Group, DA’s can actually have a negative impact on the receptors in our brains. That impact can cause potentially irreversible damage for some patients. Once a patient stops taking a DA, a patient doesn’t necessarily revert back to the symptoms as they were prior to ever taking a DA. In fact, research is showing the severity of RLS has worsened since the introduction of DA’s as a treatment. I have met patients who never took a DA who have had complete or nearly complete resolution of their RLS symptoms as they got older. After taking a DA, that is far less likely due to the damage the DA’s have done to those receptors in the brain. I happen to be one of the patients which DA’s seem to have caused permanent damage and an increase in RLS.

[HipHop1972]

Hi Little apple. Having been on Ropinirole for many years, originally prescribed as the main treatment for RLS the medical profession started to realise that Dopamine medication after years of use make RLS worse (augmentation) which is what I’m suffering with so have been advised to reduce the amount but very slowly by 0.25mg / day and wait 2 to 3 weeks before the next reduction. In between times the condition worsens with each reduction but tends to settle down. I was on 6mg / day and started reduction on 23 October 2022 and am now down to 2.25mg/ day. In for the long haul but it’s the only way. Please don’t confuse reports about RLS and Parkinson’s disease which is treated with Ropinirole as that is managed differently with much higher doses.

Because of the findings linking Ropinirole and augmentation I believe the medical authorities wanted to fix the dose for RLS at 1mg/day but the world health organisation fixed on a maximum of 4mg/day. I’m not a medical person but am only reporting facts I have been given and my own personal experience.

I hope you are less confused now. 🤔

Regards HipHop 1972