I have written a few times on this site. It is pretty obvious from all the entries by different sufferers and what they say and recommend that this awful disease has different properties for different people. It is very individual, and the remedies are as well. It's whatever works for you, the problem is finding it!
I started having symptoms when I was 18 and I am now nearly 72. The last 15 years it has been awful and recently the worst it's been. It happens every day with a respite of a few hours during the day but constant from about 5pm onwards, stretching through the night, on and off. I stand up most evenings watching the TV and when I sit down it takes about 5 minutes before I have to stand up again. I am on the maximum of pramipexol and had augmentation. I have reduced the pills from 3 to 2 and a half for the last 55 days and want to go down to 2 tablets. What comes next I'm not sure, my iron is ok but need to try something else which will help me come off pramipexol, not sure what as yet, as I mentioned before, it's a very individual disease. Doctor no real help as they don't have any experience of this nightmare. Happy New Year to all, hope you all find your individual cures.
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ACRELANE
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Mine is a similar story kicking in at around 13:00 most days with me too standing up & swaying from side to side while watching TV interspersed with short walks. Overnight is torture most nights. I am about to try Targinact opioids to help augmenting but don't know where I go after that if it fails. I can't imagine possibly 20 years more of this.
Dear AcrelaneI assume since you have experienced rls for such a long time you have no underlying illnesses & therefore you are not taking any other medication?
I am the same so I can sympathise.
I am 74. In the past before my prostate brachytherapy procedure in 2012 I used to be able to perform strenous exercises and out of breath would lie down and go to sleep. My twin brother is still able to obtain this respite.
Ropinirole was the DA medication prescribe in 2012 and like you I am experiencing augmentation with rls symptoms also affecting my torso.
During the day I am relatively free from rls unless through sheer tiredness I attempt to lie down. I guess on average I can grab 20 minutes sleep before the dreaded rls compels you to stand up.
Again like you my doctor has no experience of rls. She is, bless her, attempting to help with a fistful of health unlocked printed notes from me.
For the last month I have been cutting a Ropinirole 0.25mg tablet in half and with a 50mv capsule taking this combination each night at about 7pm.
I try to stay with the wife in bed but to protect her sleeping patterns every night now for the last few months I have taken myself off to the couch in the lounge. Like you I find myself standing watching TV during the early hours, but recently I find gentle music played through ear pieces from my mobile phone relaxes me (and the brain ) to the point where I am sleeping about an hour to hour & a half 'on the hour' with perhaps 3 or 4 times where standing is essential to be able to resume the modus operandi.
I gues I grabbed about altogether 4 hours sleep last night.
My doctor has taken the line of least resistance and decided after reading my print outs to prescribe 200mg Ferrous Sulphate for two months. Not sure whether that will be the answer because my Ferratin levels are 99 which is not too low reading the levels some on this site have (50 to 75)
At least my doctor seems to want to make a difference but is stating that Gabentine & Pregabalin the NICE recommended drugs for rls treatment are controlled drugs, meaning I think that she thinks she will have issues prescribing them?
So!! I am trying to wean off the DA Ropinirole but have noone qualified in a position to decide on a future programme which to say the least is unsettling.
Yes you are right in asking the question "where do we go from here"
(I live in Essex, UK so if anyone out there can recommend a suitably qualified & EXPERIENCED consultant?)
Yes ... There are some in the south of England I believed. Your stories all resonate with me 22 years on Pramipexole (I'm 74) and doctors in total ignorance about Augmentation. I am just about to have a conversation literally with a consultant at Stoke in the Midlands ... let's see if he's heard of it!!! Suffering from Covid 19 + Augmentation have been something I can't even describe .... still after 6 weeks going through a worse kind of hell.
I'm so sorry you are suffering from augmentation.I can't advise you about that since I have never experienced it but am sure those that have will offer support. I can say that it will pass.Hang on in there. As to what is next.Alpha 2 delta ligands such as Gabapentin and Pregabalin are commonly prescribed for RLS .There is also the opioid option. I have taken Tramadol successfully for several years. Good luck and be assured there is hope of relief.x
Hi, it's very clear you are suffering augmentatioin and I see you have understood that the best way to treat this is to wean off the pramipexole.
I'm not clear how fast you are doing this, it's better to do it slowly.
You say you have reduced from 3 to 2.5 tablets, but you don't say what dose the tablets are.
If these are the 0.125mg tabs that's fine, but if they're the 0.25mg tabs then it's too much of a reduction at any one time.
As the maximum dose is 0.75mg, I imagine your tablets are the 0.25mg ones.
If that's so then you need some 0.125mg tabs and cut them in halves.
It's usual to reduce in no less than 2 weeks, but if withdrawal symptoms don't settle you can wait longer, say up to to 4 weeks. 55 days sounds quite long and at that rate you may be simply be prolonging the withdrawals.
The augmentation part of your symptoms should reduce as the dose gets lower even if the withdrawals occur. Withdrawals are temporary.
Some people find that an opioid can help control withdrawal effects, but it's a matter of whether you can get a prescription or not.
You may be able to get a prescription for tramadol or codeine, temporarily, whilst withdrawing. They're not ideal in the longer term.
Over the counter paracetamol and codeine helps some people. There's not much codeine in it and you can't exceed to stated dose because the paracetamol can cause serious damage.
You may also need to think about replacing the pramipexole with something else. Your symptoms will improve by weaning off pramipexole, but they won't disappear.
Options for a replacement medication are an alpha 2 delta ligand, (pregabalin or gabapentin) or an opioid. Typical opioids used for RLS (in the longer term) are low doses of oxycodone, methadone or buprenorphine.
You can start either of these options whilst still weaning off the pramipexole. Some people do take both an alpha 2 delta ligand and a dopamine agonist., The opioids can help with withdrawals.
In addition you say your iron is "OK". If this means your doctor told you it's OK then this may be meaningless.
Iron levels are tested by blood tests for serum iron, transferrin, ferritin and haemoglobin. If your Dr says they're OK then it probabaly means that your haemoglobin is sufficient and your ferritin is at least 15ug/L.
A ferritin level of 15 is NOT OK for somebody with RLS, it needs to be at least 100 and ideally over 200.
If your ferritin is under 75, you can benefit from taking an oral iron supplement.
If so an over the counter supplement e.g. "gentle iron", ferrous sulphate is probably better than anything a doctor would prescribe. This is less upsetting for the gut. It's most effective if it's taken 30 mins before or 2 hours after eating along with a glass of orange or vitamin C tablet. It's best to take it once every 2 days, NOT daily.
You may read that some members claim to get almost immediate relief from their symptoms by taking iron. This is highly unlikely as it's NOT a medicine and it takes time for ferritin levels to rise, up to to 3 months or more.
Here's some information about iron therapy for RLS.
Thanks Manerva. I value your advice as its been good for everyone. I have been on the 0.25 pramepexole and I was going to cut to just 2 tablets. Not sure what to put with the Pramipexole or how much, but I will study your reply. One thing I have found is that if I can concentrate on something else like writing on the computer then my mind seems to take over my body and I get very little symptoms for a while. It doesn't last forever but it does help. Is it a case of mind over matter?? Who knows. Happy New Year.
I've bought a tablet cutter and resorted to cutting 0,088 pramipexole into quarters. My withdrawl reaction to withdrawing one tablet was so awful I ended up in hospital. So its very slowly slowly ..... supported by Gabapentin and Tegretol but I'll get there somehow .... And thank you so much for your help along this rocky road.
Augmentation is horrible. The intensity of the RLS is overwhelming.
Stick with it , even when the withdrawal is hell on earth, as once off dopamine agonists, life is so much better.
Sadly, for most of us, the last 10-14 days is really bad and is why many people give up. I had no sleep for 2/3 days and then just the occasional 30mins sleep for 2/3 days. It then started to improve little by little.
It took 6 months to find a drug combination that worked.
I now take OxyContin and medical cannabis in England. Pregabalin helped with sleep but I recently stopped taking it as it wasn’t doing anything for my RLS.
As you say, some meds work better for others BUT the clear issue is that all dopamine agonists stop working eventually for the overwhelming majority of us.
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