So I had been doing reasonably well on the 0.125mg dose of Pramipex until early Nov when I started feeling signs of augmentation as my Rls began earlier in the afternoon at times. Since I already knew what it was, I decided to cut down the dosage and my doctor had me on Tramadol on an emergency basis. With the help of Tramadol, I was able to cut the half(0.0625mg)and supplemented it with Pregab 150mg. This was three months ago and I had been doing reasonably well until the last couple of weeks when my RLS has been significantly poor. I dont have any afternoon or evening symptoms now but at night, it just doesn't stop. I had an episode till 8am a few days back and last night was up till 6am with persistent RLS.
I have talked to my doctor about iron( my ferretin is 21) and opioids ( he gave me Tramadol on an emergency basis). But he has bluntly refused for IV Iron and has just asked me to take Requip 0.5mg.
This is my 6th neurologist I have tried to explain RLS to and have even shown him some of the literature but he's refusing to act on it.
I am so exhausted but I still don't know what to do. It feels like they just won't treat me the way I should be. No matter what, I'm the one suffering.
Should I increase the pramipex dosage ?
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Heatherlss
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On no account increase the dose or take any other Dopamine Agonist.
You are right to decrease the Prami, as slowly as possible, maybe even smaller decreases.
Take the tramadol as necessary.
Others in the UK can advise on NICE guidelines to show the doctor and utterly obnoxios, ignorant neurologists.
My heart bleeds for you in this awful situation. I'd have committed murder by now, given your experience.
Sublingual methylcobalmin (sp) in a spray vitB 12 can be helpful in increasing iron levels. Also liver etc. The Iron Disorders Institute site has a page on foods to take to increase iron levels. And ways to avoid losing iron.
I truly hope you get better treatment soon.
I get so angry for other people when I hear their experiences like this. A psychotherapist once said I suffer from "projective identification". I put myself in their place. Then I start making typibg errirs!!!
I can excuse a GP from being ignorant about RLS. It's not so east to excuse a neurologist, but I cam do. The run of the mill neurologist is not a RLS specialist.
However, I can't accept the arrogance of any doctor who refuses to go along with the evidence. Medicine is supposed to be evidence based and NHS doctors are supposed to follow national guidelines which are evidence based. There are many good doctors but you do meet those whose practice is more about exerting power than caring.
Rant over. What can you do?
As Madlegs says, I don't that on any account should you increase pramipexole, if anything you should stop it altogether. If you're still taking any then it may still be causing some element of augmentation.
The suggestion of taking extended release ropinirole, requip,IF the neurologist means the extended rekease version dies have sone merit as there is some evidence that extended release dopamine agonists can help relieve augmentatuon.
Hiwever, logically thinking, if DAs cause augmentation and you have augmented why would you take another.
So although the neurologist may be able to defend extended release ropinirole, preferrably it might be better to stop ALL DAs.
I appreciate however that doing just that will leave you suffering every night.
I'm really not sure why not, but a simpler solution might be to try increasing the pregabalin. It can be increased up to 300mg, if I've read it correctly, you only take half that.
A GP can prescribe pregabalin, you don't need a neurologist.
As for opiates, I doubt you'll find any GP who'll prescribe an opiate for RLS. It woukd have to be a consultant. I also believe that it may be difficult to find a neurologist that will prescribe an opiate.
Unfortunately even national guidelines and evidence don't stongly support the use of opiates for RLS. Targinact ( oxycontin plus nalaxone) IS licensed for RLS, but the national evidence for it is weak.
It's easy fir me to make suggestions that might be hard fir you to carry out but what I woukd suggest is that you approach your GP about increasing tge pregabakin.
If you're suffering insomnia, a short course ( at keast) of a benzoduazepine might help.
There are guidelines on the treatment of RLS published by the National Institute for Health and Care Excellence (NICE) which any UK doctor shoukd not ignore.
In tge section on pharmacological treatment they do say that alpha2delta ligands can be used to treat RLS. The guidelines do state augmentation is a result of taking a DA. The guidelines do suggest a benzodiazepine if there is insomnia.
Clonazepam is a benzoduazepune often prescrived fir insomnia wuth RLS. GPs now seem to prefer a "Z" drug, e.g. Zopiclone, because these are shorter acting, but they can cause sleep walking.
Here's a link to a section about pregabalin in an article written by a RLS specialist and Professor of Neurology in 2019. 300mg is recommended.
There's also a section on refractory RLS, i.e. where DAs and gabapentinoids have both failed.
Here's a link to the UK national guidance on the prescription of pregabalin, tge BNF (British National Formulary). Pregabalin is used "off label" for RLS, meaning it can be used, but isn't licensed.
Note the BNF states that 300mg and even 600mg can be prescribed.
If you are unable to get the cooperation of your GP, I suggest you see a private neurologist. There are some that specialise in RLS. It may he difficult to find one but if you can afford about £200, a private specialist can advise your GP what to prescribe.
A "good" doctor, to me, isn't one that knows everything. they're someone who's willing to negotiate your treatment with you, who's willing to admit any ignorance and will take into account any information you present them.
This, I believe is what's expected of them and tgey are supposed to practice according to a code of conduct. If they fail to do that, then there are grounds for complaint and processes for complaining.
Sorry, ranting again. I have made complaints in the past. They have been upheld. I think we have some duty to complain, I think where there is medical bad practice there should be zero tolerance to it, with no allowance fir them getting away with it.
You will get very different advices from RLS sufferers with regard to medication, what might work for one person, won't for another, so I hope you don't get too confused. Last September my RLS went haywire, I had it day and night and although I was on Pramipexole it seemed to have stopped working for me. Sleep deprivation made me very ill, I was unable to drive or to go out with friends as I would fall asleep, even at the dinner table. I paid to see a Neurologist privately. He advised, firstly, to have my ferritin levels checked, and to take Co-codamol and Gabapentin with the Pramipexole. I was lucky, he fully understood how horrendous RLS can be and he wrote to my Dr with his advices. My Dr arranged a blood test to check my ferritin levels and the test showed my levels to be very low - they were just a little higher than your ferritin levels! I was put on Ferrous Fumarate 305mg capsules, and after a couple of weeks I began to feel so much better within myself, I had more energy and had stopped feeling so weary and tired. At the same time, my Dr noted that I was only on half the dose of Pramipexole that I could take, and upped my prescription to the full dosage i.e. two a.m., one lunch time and a further two in the evening. I also take one Co-Codamol a.m. and two at night, plus two Gabapentin a.m. and p.m. Since the changes in my meds I have my life back - I no longer suffer with RLS, I get a good night's sleep and I'm in control of my life again. I hope my information might be of some help to you, but I have a word of warning about Tramadol - get off these as quickly as you can, don't be tempted to ask for more. A few years ago I was prescribed Tramadol time and time again, and I found it extremely difficult to come off, in fact, I needed help to do this and went through some harrowing withdrawal symptoms, so for your own good, do stay off them. You seem to be unlucky with your Dr and Neurologists. Can you not see another Dr? As for a Neurologist, make sure you see one who deals with RLS, as they can deal in different areas of neurology that are not applicable to RLS. The best of luck to you.
I appreciate you taking the time out and I'm glad you have it under control.
However, at the same time, I am kind of worried about your regime of Pramipex. When I found out about augmentation I was on 0.125mg dose. And its been a year of ups and downs and flirting with augmentation but I've been very cautious about increasing the dose. Even more so after reading about people's experiences over here.
Similarly for you, I think you're taking quite a lot of Pramipex. I'm not scaring you but perhaps some people here on could advise you.
Thank you for replying to me, and I very much appreciate your concern re the Pramipexole. I am taking 0.088mg. When my RLS was really bad, I was told I was experiencing augmentation and, yes, I did see a number of postings advising not to increase the Pramipexole, so I was apprehensive when my Dr increased the dosage. I can only speak as I find, but since increasing the Pramipexole with the Co-codemol and Gabapentin, I find it works for me and my RLS is under control. It may be that at some time in the future the dosage will cease to work, and this is when I will look for other options. As mentioned, the Neurologist I saw did say that ferritin levels were very important for RLS, and he advised that my level should be 75. My blood test showed my level at 29, which was very low, but thanks to the Iron tablets, my ferritin levels have increased and this, too, has had a positive effect on my RLS. I hope the next Neurologist you see gives you your own personal level for ferritin. Thank you again for getting back to me. Best wishes for the future.
The only problem with pramipexole, it's a big one, that your neurologist doesn't appear to know about is augmentation. If pramipexole does lose effectiveness perhaps the worst thing anybody could do is increase the dose.
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The higher the dose the more likely the pramipexole is to cause augmentation. What dose are you taking?
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60% of people taking pramipexole suffer augmentation within 8 years of taking it. The 40% who don't will probably have been taking a limited dose.
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You will read many posts on here from people who've not been forewarned about dopamine agonists and augmentation and consequentky suffered.
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Sorry to burst your bubble, I'm only telking you what your neurologist should have told you, but apparently failed to do.
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Using dopamine agonists pramipexole, ropinirole or rotigotine can lead to loss of efficacy, augmentation and Impulse Control Disorder.
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In addition, I'm not sure why you're taking it morning, noon and night. If it's because you get symptoms during the day, you may be already starting with augmentation. If so, it will get worse.
Thank you very much, Manerva, for taking the time to write such an explicit account of Pramipexole. I am taking 0.088mg Pramipexole and, yes, I had started with augmentation and the Neurologist did suggest Propananol. He also did say that whatever tablet is taken for RLS there comes a time when augmentation sets in, and people then go back to their previous tablet to give them relief when this happens. In other words, a chop and change scenario. It was my Dr who increased the Pramipexole and I can't fault it at present, as I am getting such relief both from the augmentation and at night-time. I know there is no cure for RLS, but each sufferer has to find for themselves what gives them the best relief - we are all different and what suits one doesn't necessarily suit another. I know I may be sitting on a time bomb and augmentation may again set in, but until that time I need to go with what works for me. Thank you once again for your counsel. Very best wishes.
Iron is a key for many (but not all) RLS suffers - you need to raise the Ferritin level - not just "normal" find out the actual number! Oral supplements of "Gentle Iron" Ferrous Bisglycinate Chelate (non-constipating) also available as a patch from PatchMD.
PatchMD souns like an ideal soltion, but perhaps you can confirm this, I've never obtained any of the Iron patches, but I have read that someone weighed a patch and found that the total weight of the patch was less than the weight of the iron it was claimed was in it.
If that's the case then clearly the claim is untrue.!
I hear you! I've had RLS for 25 years and find it difficult find something that really helps.
About three years ago I found a pain doctor who would give me an on going prescription for Tramadol. I take 200mg and it works great. Now my problem comes as I moved from Florida to Wisconsin and had to find a new doctor. I go to a pain doctor and she says she's not licensed to give me Tramadol as it's a controlled substance. I go to another pain doctor and she says she never heard of RLS but she also says she can't give me Tramadol. I have enough for three weeks and then I'm right were you are. She wants to give me Gabapentin and I guess I have no other option but to try it. Requip and Pramipex never helped me. If only your doctor could have RLS they might be more help. I wish us both good luck. If nothing else I get a lot of walking in at night.
Most of the time the doctors reason for not prescribing is because of the rules and regulations that won’t allow him/her to do it. They know that some opiates are the best answer but the laws are made because a few stupid people make it bad for the ones that would benefit from there use.
Keep searching for a doctor, I drive 150 miles to see my doctor at the University of Chicago. I searched on the internet for weeks looking for a neurologist specializing in RLS.
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