Medication advice.: Could anyone please... - Restless Legs Syn...

Restless Legs Syndrome

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Medication advice.

kelirock profile image
14 Replies

Could anyone please tell me what a therapeutic dose of Lyrica would be? I have to ask here as folks are far more knowledgeable about RLS than my GP who, when I talk to him about RLS his eyes glaze over. I am reducing Sifrol and increasing Lyrica as required. I have been prescribed Lyrica 200mg daily but am not sure if this is a dose that will stop symptoms once I have ceased the Sifrol. At the moment I am comfortable but I still need to reduce Sifrol by a 1/4 tablet. and then two further 1/4s when the Sifrol will be finished. (I hope).

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kelirock
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Pam34 profile image
Pam34

Hello

After a long and hard withdrawal from ropinorole (with the aid of tramadol) I then started on Pregabalin (same as Lyrica). I’ve been on it for almost 2 years at a dose of 150mg which I take at 8pm each night. It gives me about 80% coverage which I am content with. I have learnt not to expect 100%. The side effects of balance issues and weight gain settled down and were a small price to pay for a good nights sleep. I believe there is an option to increase up to 300mg a night but I am holding that well in reserve.

I can’t really answer your question regarding withdrawal as it was a year after stopping Ropinirole that I started Pregabalin. I used Tramadol to help the withdrawal and I can only say it lasted much longer after my last Ropinirole than I thought it would. If you are managing with just Lyrica then you are doing really well. You might find that last step incredibly hard though without the help of Tramadol or some equivalent. Perhaps someone else on here will respond to that.

However ending on a positive note, once you get passed the withdrawal I hope Lyrica works as well for you as it has for me. I’ve got my life back.

Pam

kelirock profile image
kelirock in reply to Pam34

Thank you Pam 34 for your informative reply. I do also take a few drops of cannabis oil and have a couple of puffs at night of marijuana. I never thought I would ever be a marijuana smoker but at 72 I started and find that small amount seems to help enormously. Anything to lessen the dreadful effects of sifrol withdrawal. Really these type of drugs are dreadful.

Good advice from Pam.

As Pam says I wouldn't expect the pregabalin to entirely eliminate withdrawal effects although it may help. Reducing the sifrol by 1/4 tab each time depends on what strength the tabs are. The smallest tab is 88ug. I reduced pramipexole in steps of 44ug, half a tab, once every 4 weeks. If you're reducing in steps of 22ug you could possibly reduce more often.

However as Pam also says. the last step is the worst so I went from 44ug to 22ug, then to nothing. I did start gabapentin before I started reducing pramipexole.

I had an opiate available, codeine, if I needed it and some Zopiclone for sleeplessness, but I didn't take either.

You won't really know what dose of Lyrica will work for you until the sifrol has been out of your system a while.

150 mg is I believe is the minimum effective dose. If you're on 200mg, you could leave it at that for now. Later, if and as necessary you could increase it up to 400mg.

It is, as Pam also says, a balancing act between effect and side effect. If the dose you're taking causes side effects that are worse than your RLS symptoms, then it's too much. To get side effects minimal, you may have to accept some RLS symptoms.

As you may have experienced already, the usual initial side effects are dizziness, drowsiness and stumbling. Blurred or double vision can occur. Some people put on weight.

kelirock profile image
kelirock in reply to

Thank you Manerva for your reply. I live in Australia and have never seen or heard of Sifrol at 88ug dose. I take the 0.25mg which is the one I am reducing. Anyway, I will keep trying but am not looking forward to the final reduction of medication.

in reply to kelirock

Your tablets are 0.25mg pramipexole dihydrochloride which yields 0.18 mg pramipexole i.e. 180 ug (micrograms). There is a smaller tablet of sifrol which is 0.125mg pramipexole dihydrochloride which yields 0.088mg pramipexole i.e. 88ug.

It's confusing but pramipexole doesn't come in a pure form, it comes as a "salt" i.e. pramipexole dihydrochloride. Take away the dihydrochloride part of 0.125mg of the salt and you're left with 88ug of the "base" i.e. pramipexole.

There are 0.125mg tablets of pramipexole, some people call them 0.125mg, some call them 0.088mg, I can't be bothered writing so many numbers so I write 88ug.

If you look at the ingredients information of your 0.25 tabkets, you should see it says 0.18 mg pramipexole.

I hope that makes it clearer, but suspect it might make things worse!

In any event there are sifrol tablets half the strength of the ones you have, but not necessarily smaller in size. So you only have to cut them in half, not quarters to get a small dose.

kelirock profile image
kelirock in reply to

Thank you Manerva for your comprehensive explanation. I have never seen the smaller dose here but I have never asked my GP for them either, nor has he offered. You are a wonderful font of knowledge. Whatever amount I decrease by incrementally, in the end the whole getting off the sifrol will be a nightmare I'm sure and one I am dreading.

Joolsg profile image
Joolsg

The lyrica won’t really help While you’re reducing the Sifrol.

However, once through withdrawal it will start to become effective.

You may find you need an opioid to get you through withdrawal and cannabis.

The worst of withdrawal is the first 4/5 days after the last dose of Sifrol.

Like Pam, I’ve been through withdrawal and am so relieved I got off dopamine agonists.

Stay strong. Go as slowly as you can.

Once completely through withdrawal- keep the Lyrica dose as low as will give you relief. Average 150mg. If you up the dose too soon you may take more than you need and then there’s no room to increase in a few year’s time if 150mg stops helping.

kelirock profile image
kelirock in reply to Joolsg

Thank Joolsg for your response. It makes sense.

wantokporo profile image
wantokporo

50 mg of Lyrica stopped my PLMD and it was a miracle. I increased the dose to help with making me sleepy and now take 175 mg., but I am going to try and decrease it slowly as I am also taking THC which makes me sleepy and is less worrisome than Lyrica. I have had some mild side effects but nothing that would make me think of quitting it when it is soooo helpful! Gabapentin, on the other hand, which is supposed to be so similar, made me terribly depressed. Everyone is different. Good luck. You may not need 200 mg.

kelirock profile image
kelirock in reply to wantokporo

Thank you wantokporo for your response. Your reply is very helpful. I also take 2 - 3 puffs of mj. nightly with the cannabis oil 2 drops per night and find both of these have eased the symptoms of RLS significantly.

feetgrind profile image
feetgrind

There are others here who are more qualified than I to give you advice but I have been taking 300mg of Lyrica nightly for years. I worked up to this and it is very helpful although by no means 100%. I found the side effects started to become troublesome when I tried increasing the dose above the 300mg but, of course, everyone is different. As has already been said, work up slowly to find the minimum acceptable level for you. My new Neurologist (in Australia) prescribed Sifrol but, having read what has been said about it in this column, I refuse to take it. It will be interesting to hear what he says about augmentation when I explain my reason for not taking it on my next visit!

kelirock profile image
kelirock

Thanks feetgrind, your advice is very helpful.

martino profile image
martino

Because I suffer from Small Fibre Neuropathy as well as RLS I have a mixed cocktail of medication but amongst that is 600mg of Pregabelin. This cocktail has worked for me but I think I am now in the grip of augmentation as my sleep is getting shorter. I slept very well last night in bed at 10.45 and sleeping soundly until 4.30 when I had to get up. I can’t really increase my dose of anything so I think I will just have to accept that this is my new normal. Many in the RLS world may say that 6 hours sleep is good so perhaps moving my retiring time to say 11.15 or so might have to happen. In the advice above Feetgrind says “As has already been said, work up slowly to find the minimum acceptable level for you.” I think I need to understand what acceptable means and stick with what I have.

kelirock profile image
kelirock

I couldn't comment on augmentation, I have only experienced it once and so far while reducing Sifrol I have remained reasonably comfortable with the Pregabelin 150mg at night and a tiny amount of Cannabis oil with 2 or 3 puffs of cannabis which I smoke at night. I feel for anyone who is suffering augmentation as it is dreadful. Good luck, trial and error I suppose with adjusting your dose of current medication until you find what is right for you.

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