Restless Legs Medication: I have severe... - Restless Legs Syn...

Restless Legs Syndrome

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Restless Legs Medication

brt53 profile image
7 Replies

I have severe RLS and tried several dopamine type medicins. Unfortunately severe augemntation after several months. I needed more and more.. Consequences: RLS symptoms started during the day more severe and also in arms..

Thereafter I have been on Neupro and Lyrica. It seems that I get augmentation also with neupro.

Has anyone experience with that?

I am now on Neupro and Oxycodone. My doctor suggested to taper Neupro and increase Oxycodone. When off the Neupro, continue for a week or so only with Oxycodone and thereafter change Oxycodone for Neupro..

Has anyone experience with that?

I fear that I get rebound when tapering Neupro and I do not want to increase Oxycodone too much.

I am now pondering omn starting with dipyramadole. But still puzzling... since its experimental..

I like to hear experineces of others.

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7 Replies
LotteM profile image
LotteM

Neupro is also a dopamine agonist, and it also carries the risk of augmentation. Especially since you are still augmented from the other DA’s. Taper slowly, you can cut the patches, in halves ir quarters or even eights of you succeeds doing that. Whatever suits you. As long as you are reducing and after stopping completely, the intensity of your symptoms are likely to increase. They will settle down a while after your last Neupro, maybe two weeks, maybe longer or shorter. No telling, as we are all different as are our histories.

During te withdrawal you may have to increase the oxycodon. But once withdrawal and its aftermath are over, you may find you can reduced the oxycodon again.

On a different note, do you use re normal or the extended/slow release version of the oxycodon? I find the latter more effective and with fewer side effects. I changed upon recommendatiom from others on this forum.

Keep up the good work. You may be in for a difficult time, but I am sure you’ll see it through and find yourself in a better place afterwards.

Meanwhile, Merry Xmas.

brt53 profile image
brt53 in reply toLotteM

Thank you for your reply!

I am cutting the Neupro patch.. I am using now 2/3 of the 2 mg patch. In addition I use 15 mg extended release Oxycodone. Cutting back further the patch results in too little sleep, while increasing the oxycodone too much other side effect. I am not desparate yet, but as augmentation will increase...I donot know what the future holds.

I know that I need to go off the patch, but... Maybe I will visit hell for one week by having no patch at all. Just looking for options now...

Merry Christmas!!!

Parminter profile image
Parminter

Dipyridamole is an old and well-known drug, it has been on the market for many years as an anti-thrombotic. It is off-label for RKS/WED, but in experimental trials it was used in low doses, much less than for its original purpose, So, no harm in trying it, any doctor should be acquainted with it.

In fact, you can purchase low-does dipyridamole online, without prescription. It is being researched in the same way as low-dose naltrexone - take a tried and tested, safe drug, and discover new uses for it.

If your doctor is willing to give you Oxycodone, he/she may be willing to let you try methadone, which has little or no euphoric effect (so little chance of addiction), it lasts for a full 24 hours or more, and it is really cheap. No downside!

My own experience tells me that there is little hope of radical improvement until you ditch all dopamine agonists - they interfere with everything, including the effectiveness of opioids.

brt53 profile image
brt53 in reply toParminter

Thank you for your reply!

I will speak with my doctor hopefully soon.

I am using now 2/3 of the 2 mg Neupro patch. In addition, I use 15 mg extended release Oxycodone. Cutting back further the patch results in too little sleep, while when increasing the oxycodone too much, other side effects come up. Both is a nightmare.. sometimes more to my wife then to me.

Maybe methadone is a solution.

I know that I need to go off the patch. Maybe I can titrate dipyrimadole up and the patch down.

So I have now 2 options.

Well, a third option is cold turkey for a week or so..

What option would you take? Thanks for your help.

Merry Christmas!!

brt53 profile image
brt53

This is completely new to me. Can you give me the name of the medicine?

RosieRow profile image
RosieRow

Hi

I have just withdrawn from Ropinirole (1.5mg) and am coping well on Oxycodone. Unlike LotteM I am finding that the extended release Oxycodone takes 60-90 minutes to take effect and ceases effect 5.5 hours after taking it whereas the normal version takes very quick effect and last for about 5 hours!

I'm still getting into a routine as I only finally finished with Ropinirole a week ago. I have been trying 5mg of extended release late afternoon/early evening, when the symptoms can come in with a vengeance, especially if I'm not being active, then 30mg codeine when that wears off, around 2300-2400, and sometimes a further 5mg of normal around 0300 and often don;t wake until 0730 or even 0830. The side effects are constipation and a slight puffiness of ankles, feet and hands in the evening and when I wake up. I'm getting good sleep on that and hope not to have to increase the dose at all.

I see a GP on Friday (though not my usual one as he is now not on duty on the date we booked) to get Pregabalin and start taking that on the minimum dose in the hope that it will start acting as the DA gets washed out of my system.

Not sure that this helps your situation but just sharing my current experience. All the best with coming off Neupro.

RosieRow

Ert223 profile image
Ert223

I have been on norco 60 mgs a day 15mgs of valium 4 mgs of clonazapam

I take 1-200 percent magnesium. Restore to help with my gut microbiome it

fixes the matrix...which is destroyed by our exposure to glycophates...take

apple cider vinegar to neutralize the glycophates. I have been using a red

and an Near Infrared light that helps the norco work more effectively. And

added Medical Marijuana to the list. Am able to have 1-3 bowel movements a day.

Minimal research on Near infrared light has to be in the 850nm on up if you get

into the 7oonm it does nothing. Went for a 2 mile walk in the michigan dunes

up the sand dunes and down. Net results felt like a navy seal that had been clubbed

on the ice. Have to keep on trying and hoping. Been on the medicine for 4 yrs

and have not had to climbed the opiod ladder. At present 67 when i hit a 100

probably be on methedone.

good luck folks

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