Hi, Suffered for 5 years with RLS. Had two hours sleep last night. Last week was prescribed Pramipexole tablets. Tried one night and perfect! Seemed like a miracle drug! Nil RL and great night's sleep. Then went on facebook RLS page and everyone said stop and don't take due to augmentation - basically I would need higher doses as time went on and then RLS would spread to arms etc and I'd have to be weaned off tablets with awful consequences and RLS getting far worse than before. Would love to hear your thoughts on this as it is ruining my life. Thank you
Pramipexole tablets seem to be miracl... - Restless Legs Syn...
Restless Legs Syndrome
If the Pramipexol is working for you, then that is brilliant.
Keep taking them at as low a dose as will let you have a good nights sleep.
Do not go above 0.25mg.per day.
Augmentation is a strong possibility at some stage, but may not affect you for a long time. Some people have been ok for 10 years.
You may be a lucky one.
Live you life in the present and enjoy your nights of deep sleep.
In the meantime, get iron checked, watch the triggers and avoid stressful situations.
You'll be grand!
I was diagnosed with RLS correctly about 16 years ago and put onto Mirapex. It was amazing how it controlled my symptoms and I felt that I could rely on it consistently. About 2 years ago, after having my dose increased repeatedly, my latest in a string of neurologists told me that 6.0mg daily was too much but he did nothing to adjust that. Last year he told me that they had found that Mirapex caused augmentation but he did nothing to adjust my dose. This year I switched to yet another doctor in his large, UPMC-owned practice. She told me that I had to stop the Mirapex and switch to a Neupro patch - she did not wean me off of the Mirapex and for 17 days I did not sleep one minute, I had massive painful spasms that even started to affect my arms, took multiple hot baths, paced the floors, cried and cried and cried. She then had to increase my Neupro patch from 2mg to 4mg within two weeks because it did not feel like it was doing anything. I have since then slowly reduced my Neupro patch back down to a 2mg patch. You are correct that you will need to increase your dosage over time because RLS does not go away or improve over time. If you are on a very low dose you should be okay for a while - I started on .25mg and stayed on that for 4-5 years and had pretty good relief. Hopefully during that time researchers will discover something new or a better treatment regimen that could replace the Mirapex. The bottom line is that everyone on this site has tried multiple approaches to get relief and some work, some don't - some work for one prson but not for another - but you need to do your research and be knowledgeable - don't rely totally on your physician because most of them are as unsure of what to do next. My current neurologist has been pushing for me to try Methadone and I've heard from others on this site that it does work well, but I really don't want to go on yet another highly addictive medication, so I am just playing with my medications as she suggested I do. I take two 300mg Gabapentin 3-4 times a day, .5mg of Mirapex once or twice a day if I'm having a bad day and my PCP put me on Tramadol which I take a couple of hours before bedtime and then if I get up after a couple of ours he told me to take another one. Most nights that helps. I also use Calm magnesium gummies once or twice a day. I still have some days where a breakthru is bad, but not as bad as it was before my Mirapex withdrawal in June and adjusting to this new regimen. The other thing that I've found helpful is to keep a notebook or a file on the computer documenting your symptoms and progress with any medications.
Wow, Tobias, that is a horror story. It is hard not to consider that your original neurologist(s) were negligent (in a legal way) in your treatment. You seem to be doing a good job of informing yourself and working out what you need to do next. So ... I'm sure you already know that even the 0.5mg of mirapex that you are currently taking is generally considered very high and that if you want your symptoms to return to a base line you will ultimately have to consider withdrawing from the dopamine agonist completely.
I live in Pittsburgh and had UPMC insurance until this month when I went onto Medicare. I have been using UPMC physicians during this time and UPMC has bought out almost all of the independent neurologists (and all other specialities) and created UPP Neurology - this group has 35+ neurologists in the group and I have seen 10 of them - every one of them treated me with Mirapex and continually increased my dosage as my symptoms increased. Until a year ago I followed them blindly, but no more. I have applied to be seen at a specialty clinic at Johns Hopkins where they work specifically with RLS patients in the hopes that they may have a different approach. I also have an appointment next month with a neurologist from the other medical powerhouse here in Pittsburgh - Allegheny Health network (AHN) because she and her partner state on their webpage that they specialize in RLS. I am trying to avoid the Methadone route at all cost - no one has sold me yet on it being the "only" option at this point. I am "only" 65 and hope to live a lot longer, with this illness part of my life, and don't want to do it addicted to anything.
You would think that you would be entitled to follow your neurologist's advice - as you did. They are the experts after all - supposedly. Unfortunately, there are numerous cases on here of people who have been led astray doing just that - myself included.
It sounds like you are doing all the right things now at any rate. The John's Hopkins RLS team are very well recognised and at one time I considered travelling to see them myself (from Ireland).
I can totally relate to your reluctance to embark on opioids. I remember the shock I felt (and I'm even younger than you) when I realised that not only was this a possible option for treatment of rls but that in many cases it was the only remaining option. Now I wish that I could tolerate opioid treatment better.
An alternative to methadone that I am noticing mentioned increasingly is buprenorphine (aka tamegesic, subutex and belbuca). Although it is an opioid, it seems to be less susceptible to abuse and possibly less intrusive in terms of side effects. Moreover, it seems to be particularly effective in treatment of rls symptoms for many sufferers.
However, it is likely you are some way from being treated with opioids. Depending on your serum ferritin, you may find that your symptoms can be greatly improved by getting off the dopamine agonist, raising serum ferritin and possibly using an alpha 2 delta ligand such as gabapentin or pregabalin. Neurontin (not available this side of Atlantic) is often very successful for US based rls sufferers.
Hopefully, the John's Hopkins guys will get you right. I'm sure there are many people on here who would be interested to hear how you find them - I know I would - so it'd be great if you keep posting. Good luck!
Please do not be confused about very low dose opioids and the hysteria over opioid addiction.
Low doses are perfectly safe and acceptable ( assuming you are not of addictive personality)
As someone mentioned, Buprenorphine is a particularly safe one, because it has such a low dose. But extremely effective. There are patches and in mouth cheek pieces.
The patch ( Butrans) is supposed to last a week, but typical of patches, may only last 5 days.
Please don't let the current opioids hysteria prevent you from a peaceful future.
I second Madlegs. Something about forewarned and forearmed. Don't forget about it, i.e. stay on the lowest possible dose and post the signs of augmentation somewhere where you will be reminded of them frequently. If any of those appears, the life of pramipexole for you will have come to an end. It usually starts with tolerance or symptoms creeping in earlier. But, as Madlegs says, maybe you're one of the many who get some 10+ good years on it. Enjoy while it lasts.
Ok thank you. At moment just had one night and it was prefect! Was so happy until I read forums about the drug and now not feeling so positive. I'll try another tablet (0.088mg tonight as such a terrible night last night.
Hi David, if maybe you don't have RLS every night, you can also take pramipexole on an "as needed" basis. The test gave been done with daily dosing etc, but both my pharmacist and dr Buchfuhrer when I asked him confirmed this, as pramipexole (as well as ropinerole) works fairly fast. The problem may be, however, that it works better when taking before onset of symptoms. Thus, if you want to try this approach, you could try to wait until the first signs or slight 'tingling' starts. Trial and error, which can be good.
Hi and thanks for reply. I get RLS every night but I was thinking taking this drug after a particularly bad night like last night (2.5hrs sleep). Thinking of using now and then when desperate. Does that sound ok and hopefully avoid augmentation?
It is not yet known whether and how augmentation van be avoided. But the general idea is, apart from not taking a dopamine agonist, to keep the dose as low as possible and not give in if te need for a higher dose arises. If it does, reduce rather than increase. Personally, I think augmentation is a gradual process, with earlier and later signs. Tolerance and needing a higher dose, as well as symptoms starting earlier are I think the first signs. Then medicines not lasting as long as they did before. And the last signs are daytime RLS and RLS symptoms in other body parts.
It is fully up to you how and when to take your meds. Do consider that if you only take meds if symptoms are particularly bad, you may still be slowly wearing yourself out. And generally tiredness worsens RLS. On the other hand, taking a DA intermittently may indeed postpone the onset of augmentation. But that is only an idea, it has not been researched. It is even not k own what exactly is causing or going on leasing up to and during augmentation.
As said before, also by Madlegs, many people profit from pramipexole taken on a daily basis for many years. The people that don't get augmentation most likely do not attend this or another RLS forum, so our views as a community are most likely skewed. Unfortunately, nobody has a crystal bal with knowledge about augmentation. I haven't even seen the question asked who and under what conditions do people get augmentation or not. Only that higher doses and longer use increases the chance, and at least the latter simply follows from the theory of probability.
Sorry to have to clearcut advice for you. But you are very welcome to discuss further. Good luck.
Hi David. I have had years and years of suffering with rls. I also have been prescribed pramipexole. I have been taking for a couple of years and they are a blessing. You can't really take it as and when required as you have to take it 3 hours before bed. It works properly when taken early. I take mine between 8-8.45pm even if I got to bed later, it still works I used to have rls every single night. Not anymore. If I don't take my medication on time I can get it until the tablet kicks in.
If I’d known then what I know now I would have tried gabapentin first.
I was very happy on pramipexole for about a year then augmentation set in with the need to slowly wean off it. Not nice.
Certainly check your iron/ferritin status too, improving it for some is all that’s needed.
Pramipexole really does seem like a miracle, but for lots of us unfortunately the miracle doesn’t last.
All the best
Very good to know and thank you. I have had blood tests today so will know outcome of those on Wednesday. What a learning curve!
Come back to us with your blood figures.
The actual numbers for Hgb,, serum ferritin and serum iron are important.
GP said yesterday all my bloods are normal but I have a low heart rate and so having an ECG tomorrow to check that too. I haven't asked about actual figures for iron etc but apparently all good and normal.
Bulls#it. You MUST get the actual figures.
Go in and kick the door until you are given the actual numbers.
These guys are supposed to be science based. Yet they treat us like idiots.
Demand the actual printout from the bloods and get back to us.
Apologies for the attitude- I'm going through a bad day.☢️
I thought this sounded like you on a good day, Madlegs
You need to know the numbers, particularly ferritin which we want to be over 100.
There’s a good app called Evergreen (if you’re in the UK) which allows you to access test results, repeat prescriptions etc. If I remember rightly you need a code from your practice to sign up
Hi as the Pramipexole worked so well for you then you obviously respond well to Dopamine Agonists. However I would ask to change to Rotigotine (Neupro )patch. It is a Dopamine Agonist just the same but has the lowest rate of augmentation of all the Dopamine Agonist. I have stayed on the lowest dose 1mg patch for several years and I take a breakfrom it now and again to try to avoid augmentation
It is worth noting that it is very expensive compared to the tablets which is one reason GPs may not prescribed it so often. I took in information about augmentation and Neupro patch having lowest rate and I got it prescribed
Only problem I have with it is a skinreaction to the adhesive backing but I have found ways to help with that
Hello Pippins, how do you manage the skin reaction, I get it badly and would be interested to hear what you do? thanks
Hi YogaDog i managed to find an article regarding allergic reactions people were having to a pain patch and wondered if the same principles would apply with the Neupro patch. My reaction was very severe and actually brought my skin off my arms and several got infected. ..
I tried different parts of my body and for me my reaction wasn't as bad on my stomach area although still bad enough. I saw my GP who was happy to prescribe the steroid inhaler which was helping with the pain patch ,It is a brown steroid inhaler the exact same one used to control Asthma although half the strength (GP calls it a childs dose when used for asthma ) . The idea is to spray the skin then apply the patch however I found this seemed to limit absorption of the Neupro patch as my RLS wasn't as well controlled and sometimes the patch would fall off altogether. So what I find better is to use the inhaler on the skin as soon as I remove my old patch although this obviously does not solve the problem of the patch causing itching whilst wearing it I replace my patch around 6,30 in the evening.I give each red squares mark left by the patch one spray as i remove the old patch, then another the following morning.
I also put the patches in different areas of my stomach working on a 5 day rotation so for example for 5 days they will be on my right side. They will get the steroid treatment twice, then I use Sudocream dabbing each angry squares being careful not to get it on or underneath the new patch.
After 5 days I use a moisturising cream twice a day on that area as my next 5 days worth of patches will be starting on a different part of my stomach
So basically to sum up First couple of days steroid spray -followed by Sudocream -followed by a moisturising cream (I use aquas cream )-change location every 5 days. I keep creamy by my bed incase itchiness starts up during the night -find which part of your body has the least reaction -use the smallest mg of patch than works for you
Hope that helps and if you are lucky you may find that you can spray the steroid and place patch on top without any loss or efficiency
P's you could add in allergy cream in too but I always worry it may cause the same reaction as antihistamines which worsen RLS and I need to look into this further as some antihistamines are safe to use )
Hi, I agree with what people say. I've been on Ropinirole for about 3 years without Augmentation. And I keep the dose low (0.5mg a day) and have time away from it - I'll occasionally go a few days, maybe a week or more without taking it. It can be hard sometimes, but I always know I can go back to it eventually and without risking augmentation, which helps a lot psychologically.
All above comments so helpful and useful. Massive thank you to everyone for your comments. I'm in a ongoing conversation with my GP and still weighing up everything but appreciate your help.
I'm not sure it has been mentioned previously but there is some evidence to suggest that augmentation is more likely to be avoided if serum ferritin is maintained at a high level (ie above 100). Therefore the suggestion of getting your serum ferritin measured is particularly apposite in your case and make sure you get the actual figure - not just that you are 'normal'.
I would second Lotte's suggestion of occasionally taking a one night break from mirapexin. As you are on such a low dose this is feasible and may defer the dreaded augmentation.
Also you could consider taking half a tablet to see if that works for you - maybe take half tablet one night and whole one every other night. When I first started taking pramipexole one half tablet actually worked for a while (but I ended up on 1.6mg which was not good - though not so bad as poor Tobias above).
The suggestion of moving to neupro is also a wise one (Pippins is very wise) as there appears to be a lower incidence of augmentation - although there are some people for whom neupro just doesn't work so well as other forms of dopamine agonist.
In your shoes, I would also look into other treatments that may help if (when) the dopamine agonists cease to be so effective (sometimes just 'topping up' with a couple of solpadeine - for the codeine - can be sufficient). I concur with the others who have counseled against ever increasing the dose. Once you start chasing your rls symptoms with a dopamine agonist you are on a very slippery slope. You would do better, ultimately, to move to or combine with another treatment rather than increase the dopamine agonist and be very firm with any medical advisor that suggests otherwise.
Bloody hell! I just read your response to Madlegs and see that you are yet another victim of the 'normal' answer in relation to your serum ferritin. 'Normal' for the general public can be as low as 20 but this is FAR too low for someone with RLS and many (most) GPs don't realise this, Why are they so resistant to giving the actual figure? It drives me crazy.
I would suggest that you phone the surgery again and ask them to send you the print out of your results or - at a minimum - the actual number for your serum ferritin.
I've been taking a low dose for about 6 months and as you say, it does feel like a miracle cure.
Personally, I'm just enjoying the sleep and relief it provides for as long as it lasts.
If I get to the stage where it no longer works at this low dose, then I will ween off and replace with alternative.
Hopefully by then we may have a good alternative.
To add to my comment aboutNeupro patch, I have stayed on the 1mg which is the lowest dose all along , the majority of the time I cut a piece off so only actually 3 quarters of 1mg. I take a tiny dose of strong painkiller and a low dose of Pregablin all which help me to not need to increase my Neupro patch. Every 4 months I take a 2 weeks break but I am going to change this to every 2 months taking a one week break. The Neurologist wrote to instruct my GP to prescribe me 42 Zopiclone sleeping tablets and 84 Clonazepam a year to help me through the breaks .This schedule keeps me RLS free 99 % of the time and the 1% it doesn't is usually caused by being overtired from late nights /early starts not RLS
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