Question about DAs: Is it ok to take ... - Restless Legs Syn...

Restless Legs Syndrome

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Question about DAs: Is it ok to take a DA at the lowest effective dose for a while and quit it immediately at the first signs of aug?

MrCrow profile image
15 Replies

Title says it.

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MrCrow profile image
MrCrow
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15 Replies
Madlegs1 profile image
Madlegs1

Yes. Perfectly ok.

Just don't be tempted to continue or up the dose or change to another DA.

SueJohnson profile image
SueJohnson

No it is not OK. Your dopamine receptors may be damaged making the first line treatment gabapentin or pregabalin not work. If it is pramipexole it will take 4 weeks to come off it at the lowest dose because you have to cut it in half and reduce by that amount every 2 weeks. And even though coming off a DA at the lowest dose takes less time it still can be hell to go through.

Marzipana profile image
Marzipana in reply toSueJohnson

Hi Sue, is your answer to mrcrow due to the assumption that he's asking about actually starting up taking a DA regularly? When i first happened upon the Healthunlocked forum, it was when I asked if it was OK to take one 5mg Ropinerole once a week to get one night of decent sleep per week. I was told that would not cause augmentation. I've been doing that for 9 months, as none of the other numerous drugs I've tried helped. (Well, Buprenorphine did, but I had violent nausea and vomiting for the next 24 hours) I often worry about taking that 1 Ropinerole per week, but the exhaustion of not sleeping every night overules my worry. Any thoughts or suggestions? I may get a prescription soon for Dipyridamole, of which I know nothing.....I've only heard about it here.

SueJohnson profile image
SueJohnson in reply toMarzipana

Don't worry about taking ropinirole once a week. According to the Mayo algorithm that is OK . Relax and enjoy your sleep.😀

If you want you could try reducing it to .25 mg and see if that works.

Marzipana profile image
Marzipana in reply toSueJohnson

Phew! I was a bit worried there!!I tried the .25 mg dose, with one hydrocodone, per my doctor's suggestion, but that didn't work too well. Tomorrow the Dipyridamole prescription should be in, so I'll give that a go. A nurse said not to have caffeine, but I'm wondering if I have coffee in the morning I can take the Dipyridamole at bedtime.

As always, thank you for your help, Sue.

SueJohnson profile image
SueJohnson in reply toMarzipana

I hadn't realized coffee affected dipyridamole but in researching it I found out it does. So I am glad you brought this to my attention. The advice is to avoid it 12 to 24 hours before taking the dipyridamole so it is possible you could take it in the morning or it is possible you can't take it at all. I would try decaffeinated coffee for several weeks and then experiment with adding regular coffee.

MrCrow profile image
MrCrow in reply toSueJohnson

Are there any studies on how long dipyridamole remains effective for RLS?

SueJohnson profile image
SueJohnson in reply toMrCrow

No because it hasn't been used for that purpose for very long. The article by Diego Garcia-Borreguero was published in June 2021.

MrCrow profile image
MrCrow in reply toSueJohnson

I've seen anecdotes about its long term use on reddit and a few reported that it remained effective for them for about 5 - 6 months before some loss of efficacy.

Joolsg profile image
Joolsg

Having read what the top experts now say, I wouldn't touch dopamine agonists. They can cause permanent damage to dopamine receptors and that means the brain cannot absorb iron effectively. Also it makes gabapentin and pregabalin less likely to work. So, you are then left with only opioids. If you can't tolerate opioids, you will have no treatment options.There's a very good reason why the new guidance from The American Academy of Sleep has relegated ALL dopamine agonists to 'end of life scenarios'.

Elisse3 profile image
Elisse3 in reply toJoolsg

Well that’s scary as i take one .088mgs pramipexole and two or two and a quarter codeine at the moment. I can’t take gabapentin or pregabalin. Still waiting for neuro appointment to ask for targinact to be prescribed still won’t know if a can actually tolerate the targinact til i get to it. How hard will it be for me to get off that one pramipexole

Joolsg profile image
Joolsg in reply toElisse3

Sadly Elisse, no one can answer that. It depends how long you have been taking it and how you respond. We've seen some people sail through withdrawal at that dose. Others suffer severe withdrawals.And lately, some people are avoiding withdrawals by switching to a low dose of Buprenorphine first and then increasing Buprenorphine very slowly as they reduce Pramipexole.

Elisse3 profile image
Elisse3 in reply toJoolsg

🙁

JenniferBut profile image
JenniferBut

Please don't. I was on lowest dose and weaning was awful. Avoid avoid Avoid!

Sydney75 profile image
Sydney75

These conversations are always interesting, my husband has parkinson's and rls secondary to the parkinsons and his dopamine receptors don't produce dopamine hence he needs to take carbidopa/levodopa. It is the Neupro patch 2mg that quiets his RLS which is more like a myoclonic jerks. Slowly reducing Neupro bc of unwanted excessive daytime sleepiness. Gabapentin he has been on for 5+ years before neupro for nerve pain. For him Gabapentin causes memory/cognition issues above 900mg. Tried Graisle n Horizant thinking time release would lessen cognition factors, still had same problems. Unfortunately it also slowed metabolism n he has gained weight. I think his PD complicates treatment. The take away from neurologist is do not stop Gabapentin abruptly either if you switch to something else. He has had patients go through a wicked withdrawal. Tapering is the key for these types of meds. His neurologist often has residents with him during visits and the residents are now well informed about avoiding dopamine antagonist in neurology rotations in med programs.

Good luck!

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