Morning fellow sufferers.I have had this dreaded disease since I was 18 and am now nearly 72. Over the last 10 years it has got steadily worsen until it has become unbearable, virtually most of the say and about 2 hours interrupted sleep a night.
Having joined this group I have gained a great deal of information and didn't realise until speaking to you that I was experiencing augmentation, in fact I had never heard of it. Since then I have tried to take your advice. I now understand that it is a very individual disease, what works for me may not work for you, however, having been on the full dose of Pramipexol (3 pills a day) for many years I have tried to come off it. I started 2 weeks ago by cutting out half a pill and intend to carry on for a month and then another half a pill and so on. Just before bed time I take 2 paracetamols and believe it or not, apart from the first 4 or 5 days, it has reduced my jumping hugely. It is still there but I can cope with it. I get on average 6 hours sleep a night and I constantly have my fingers crossed. Don't know where this will end up but so grateful to this site and all of you for the help I have received. Even the relief I have had may be small but is huge to me. Thank you. I will let you know how the next stage goes.
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ACRELANE
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What dose of pramipexole were you taking? There are different strengths!
The maximum recommended dose for RLS is 0.75mg (540ug).
This is either 3 times 0.25 mg tabs OR 6 times 0.125mg tabs.
The significance is that it's better to reduce the dose in small steps of 0.0625mg, that is, half a 0.125mg tab. If you're trying to reduce it in halves of a 0.25mg tab i.e. 0.125mg, it is possibly too big a reduction and hence withdrawal effects may be worse.
Reducing by half a 0.125mg tab about every 3 - 4 weeks is probably a good reduction regime.
Generally speaking, paracetamol on its own is unlikely to help with withdrawal symptoms. There is no logical reason why it should.
Usually, opiates can be quite effective in easing withdrawal symptoms. Codeine or tramadol can help. However, most doctors will be unwilling to issue a prescription, but you could try asking.
Failing that, you should find that over the counter paracetamol and codeine is better than just paracetamol on its own. This is because of the codeine. Do NOT exceed the stated dose however, too much paracetamol is dangerous.
Hi I'm on 3 x 0.25mg per night. The doctor said that it was the highest dose.
If I had known about augmentation I wouldn't have gone from 2 tablets to 3.
I am now on 2 and a half a night with 2 paracetamols a night, What will happen when I go to 2 pills after a month I don't know. I want to see how it goes as I don't really want to supplement it with anything else, however, I realise I may have to. I have noted that others in the group have had trouble with other drugs and am wary about trying anything else. I am so aware that this horrible disease is an individual one and what is good for one may not be for another.
Thank you for the reply and I will let everyone know how it goes. Good luck with your fight.
Your Dr is correct 0.75mg is the "official" maximum dose. RLS experts however generally say no more than 0.25mg.
I suggest you change the tablets from 0.25mg to 0.125mg tabs. You can then cut these in half, which is easier than cutting a 0.25mg tab in quarters. I suggest you don't reduce in steps any greater than 0.0625mg (i,e, a 1/4 of 0.25 or 1/2 a 0.125)
Your next reduction then would be either 2 and 1/4 of 0.25mg tabs OR 2 X 0.25mg tabs plus 1/2 a 0.125mg tab NOT 2 X 0.25 tabs.
Despite the smaller reduction you may still experience withdrawal symptoms which usually take the form of worsening RLS symptoms and insomnia, but this should be temporary.
Paracetamol with CODEINE should be more effective in reducing withdrawal effects than paracetamol.
You may find as the dose gets lower then the withdrawal effects get worse, but the augmentation aspect should fade.
If you don't intend to replace the pramipexole with anything else, then when you stop taking it, your RLS may return to how it was before you started taking pramipexole. It may be worse as there is a possibility that taking dopamine agonists causes some permanent damage.
I can only say that I was also on 0.75mg pramipexole up until Oct 2018. I started taking gabapentin and slowly reduced the pramipexole. It took me ten months. Since stopping the pramipexole I continued taking gabapentin and for the last 17 months or so have rarely had any RLS symptoms at all.
The other recommendation with augmentation is that you have blood tests for serum iron, transferrin, ferritin and haemoglobin.
Even if your haemoglobin is normal, if your ferritin is below 75ug/L it's recommended you start taking an oral iron supplement. This can help raise ferritin to at least 100ug/L at which level 50% of RLS sufferers experience some improvement. Ideally ferritin should be at least 200ug/L, but this is not really possible with oral supplements.
Here's a link to some information about iron therapy for RLS
I have posted a few times recently about my own restless legs issues but I wanted to pass on to you something which I have found extremely helpful in the last couple of weeks, in the hope that you can spread this to other sufferers.
I was encouraged to see a highly respected local Osteopath to see if there was any help available and I will copy the notes she suggested that I pass on to others:
"I saw an Osteopath who identified two things : i) a "breathing pattern disorder" (my diaphragm was contracting upwards & inwards, instead of downwards and outwards). ii) both my iliopsoas muscles where chronically tight, especially my left one. Both of these issues, were affecting the major blood vessels to/from my legs (aorta, vena cava and the iliac arteries & veins). In addition to hands-on treatment, the Osteopath coached me on a specialised exercise to rehabilitate my diaphragm, so that it re-learns to contract correctly, as well as a stretch for my psoas muscles. I would recommend anyone suffering from restless leg syndrome to consult an Osteopath, with these things in mind."
All I can say is that after a couple of days to master the breathing technique she taught me I was waking during the night and MY LEGS WERE CALM!!!!! This is the first time in decades that I have not been troubled at night and I have had 2 weeks respite already. Can I just emphasise that she was most insistent that people are guided through the learning process by an osteopath (most of them will be very familiar with the technique) as it is easy to get the wrong idea just trying it yourself.
Hope you can help to pass this on. It may just help a few people and nothing lost by giving it a try.
Thank you for sharing this interesting information.
I'm sure if anybody should suspect they have this same breathing difficulty then a visit to an osteopath is well worth a try.
I'm very pleased that you have had such good results.
Generally speaking there are many well known causative and excaerbating factors which contribute to RLS and different people are affected by different factors.
These include genetics, iron metabolism and brain biochemistry e.g. dopamine, glutamate and adenosine levels. There are also other conditions that can lead to RLS e.g. neuropathy, diabetes, thyroid function, vascular conditions and kidney disease.
Hence it would seem that an osteopath will be of little help to the majority of RLS sufferers, but it is worth a mention.
It's lovely to hear that things are more positive for you. That really sucks that you've had RLS for so long, and such bad augmentation. I can't comment on coming off the Pramipexole (thankfully I never took DAs), but from what I've read on here it's ridiculously hard to do, so that's fantastic you are doing so well. Do be careful to do it in a way that doesn't cause you withdrawals though. Manerva has been through it so I'm sure his advice is prudent.
It must feel wonderful to get 6 hours sleep after only 2 hours. I'm so delighted for you and I hope your success continues. All the best and keep us updated.
Thanks for your reply, this chat line is great for morale apart from learning and hopefully finding the right way for each of us as individuals. Good luck to you.
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