Lyrica : Hi I have been on Lyrica for... - Restless Legs Syn...

Restless Legs Syndrome
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Lyrica

cdtofi
cdtofi

Hi I have been on Lyrica for many years not really sure how many as it gives me a foggy brain and I have lost a lot of memories.

I have Refractory RLS. Well they put it under the umbrella of RLS. I have my pain 24/7

They did not know what else to call what I have. Restless legs the brain tells the legs to move but mine well my brain does not tell my legs to move. So I guess they help with a little of the pain but I still have it 24/7. The only way I can get a little relief is by using heat. All night I continually heat water for my hot water bottles

I take 3 mg Sifrol & 150 mg Lyrica. I would not really recommend either of those drugs as I still have my pain

Thank you for reading

38 Replies
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Hidden
Hidden

Hello, and sorry to hear you are suffering so much. It sounds like you might have augmentation from the Sifrol and there is a lot of information on this forum and on the internet. I have not experienced augmentation so cannot help with that but just wanted to say your experience of pain but without the urge to move your legs chimes with mine. My consultant said I have 'well controlled RLS' which seems a contradiction in terms and sometimes I wonder if I have RLS at all (I do have PLMS). The pain in my legs is relieved by movement but my urge to lay still so that I can fall asleep is very strong and so I choose not to move my legs about as I know that won't help me to sleep.

Recently I have been on Neupro patches (which are a dopamine agonist like Sifrol) which have not reduced the leg pain. But I have been taking codeine in small doses (15mg or 30mg) and that does help. When I took codeine on its own it didn't help the pain, but seems to be working with the Neupro. Have you tried codeine or any other opiate painkiller? In the UK codeine in low doses is available over the counter.

cdtofi
cdtofi
in reply to Hidden

Hi Thankyou for your message. Yes I take 2-3 Paracetamol/Codeine 30MG per day. No Codeine alone did not help me either. I have never heard of Neupro Patches I will look into them. I do take Endone when really desperate but I do not make a habit of it. Goodness in Australia/Tasmainia everything with Codeine a Prescription is needed.

Thank you

I think Sifrol is the culprit here. As Tatiana advises, look up Augmentation. 80% of people augment so you will probably have to get off it slowly.

Read everything you can and get serum ferritin above 100.

I agree with the others. 3mg of siffrol sounds like a VERY high dose and is likely to be contributing to your problems. You should look out for impulse control issues also like gambling or internet shopping as these are a very real problem with high doses of that drug.

Ha ha Yes I have been an Internet Shopper but hardly go on anymore. I was on Ropinerole I got through the Hospital Pharmacy but then I came to another State and Ropinerole is not on PBS so they put me onto Sifrol so I am still trying to get the right Dr to prescribe Ropinerole through a hospital pharmacy. Thank you for your message

Sifrol is pramipexole, and the most recent guidelines from top RLS/WED doctors is not to go above 0.25mg. So, you are on an unforgivably huge dose. Your doctor is completely out-of-date, I'm afraid.

Dopamine agonists cause our already-stressed dopamine system to be overwhelmed, and dopamine receptors either die or 'internalize' into the cells with the onslaught of DAs.

As a result you will get symptoms earlier in the day and they will creep to other parts of the body. Everything will go downhill.

Familial RLS/WED is a slowly progressing condition - very slow - but DAs speed up the misery hugely.

Your hammered brain needs a permanent rest from Sifrol. If you quit- which is not easy, but necessary - you will likely go back to the condition as it was when you started. the drug.

To get off so much Sifrol you will probably need an opioid such as oxycodone or methadone to ease the path.

It can be done - do not despair.

cdtofi
cdtofi
in reply to Parminter

Thankyou for your message. After reading all about Sifrol here I will be speaking to my Dr next week. Thank you

I agree with everything that’s been said about augmentation.

The following links will confirm what everyone has been saying. Read them and educate yourself before going back to see your doctor as he clearly hasn’t a clue.

rls-uk.org/augmentation-reb...

sleepreviewmag.com/2015/02/...

Pam

is it 3 mg Sifrol or 0.3?

cdtofi
cdtofi
in reply to Pinkliz

3 mg ER

please research magnesium deficiency and symptoms of magnesium deficiency also research vitamin d3 and k2 Mk 7 goodluck

cdtofi
cdtofi
in reply to robert1957

Hi Robert Thank you for your message

I tried 3 years on Magnesium nothing changed it did not even free me from Night Cramps.

I understand D3 but I don't understand K2 or Mk

Would you please write the full word for me ?

Thank you

cdtofi

robert1957
robert1957
in reply to cdtofi

d 3 is sunshine vitamin k2mark7 helps calcium get where it is supposed to be bones and teeth can I ask you which type of magnesium you used thankyou

cdtofi
cdtofi
in reply to robert1957

Sorry it was a while back. All I can remember was I took 1000 mg per day

robert1957
robert1957
in reply to cdtofi

please research bioavailability of magnesium as they are all different if the magnesium you were taking had poor bioavailability say 2% 1000 mg would only give you 10 mg if you research magnesium oil you can even make your own for a fraction of the cost even use it in your bath Epsom salts is a form of magnesium good luck ps I use magnesium citrate 400mg per day it has a bioavailability of about 30%

cdtofi
cdtofi
in reply to robert1957

OK Robert Thank you. I have never had so much information and I have had this condition over 40 years. I am straight onto the Magnesium and the others. Thank you again

please research foods high in magnesium

cdtofi
cdtofi
in reply to robert1957

TRI-MAGNESIUM CITRATE 900MG

Is this one too much Robert or should I stick to 400mg

robert1957
robert1957
in reply to cdtofi

it might be. you could try it. the magnesium citrate I take is 200mg per tablet if you take 1 aday to start with then 2 aday after a week if you take to much your stomach will let you know

I use solgar magnesium citrate 200 mg per tablet

Hi I was on the above meds then halved them about 4 weeks ago

Now my legs are going crazy again

So which pill will I take another half of???

Hi again

I’m back

Well I have taken advice from this group and Weined myself down a lot to what I was taking for my crazy legs

First I just want to let u no what I was on to what I am on now and I would luv some advice please

So I was on

Panadeine Forte 30 mg x 6 daily now down to 2x 1.5

Sifrol was 3 mg ER down to 1 mg x 2 daily

Pregabalin was 150 mg down to 1x 25mg daily

Endep was 100 mg down to 75 mg daily

Down side is that I need to take 1 Oxycodone 5 mg every day as I suffer also from bad Arthritis n I need to rest in the middle of the day as my legs feel that they can not carry me any more. To do this I need to take this drug. As without it I can not sit still.

Sometimes after my pills of a night my legs go crazy so I have been known to run a hot bath up to 3 times a night to settle my legs n to stop them jumping out of their sockets

My question is that I need more of something and I figure this is Sifrol or Lyrica but I really do not understand what each one does so not sure which one I need more of. They are both for pain I realise this

I take hot water bottles to bed with me every night with the fans going ha ha.....I need to heat them up every 30 minutes to ease my pain. Start losing heat & need to refill. If I did not do this plus baths with Magnesium I would never get any sleep

My doctor leaves it up to me to decide but since coming off a lot I just don’t no what to do next

I would love some advice please

Thank you

Well I’m back n I have hit the Jackpot. I asked dr could I try a patch NORSPAN

So the first night after the 5 mg my leg pain disappered. Then he suggested I try a 10 mg. My legs stopped jumping. I feel like I hit the Jackpot. The meds will come down soon . First time that I can remember back that I have normal legs 😄😆

cdtofi
cdtofi
in reply to cdtofi

Well I was a bit embarrassed to write again as the last time I said that I had hit the jacKpot. Well I found out that wasn’t true. I was on the patches.

I can not take Oxycodene any more as it stopped working as did the patch. I am still weining myself off the Patch.

Well I have tried every drug possible but nothing works. The ones that are to stop Muscle Movement well them have the opposite effect, just like Valium they make my legs go so crazy , non stop. Very hard to handle

I need a little help here please. I am on Sifrol 1.5 mg.

Lyrica 75mg. I definitely need something more, it just sends me crazy ,my legs. Bath after bath, Tens Machine, Hot water bottles refilled every 15 mins. I am about at the end of my tether with it all. I get nauseous sitting in so many baths, from afternoon I end up having 4-5 a day to calm my legs, but I get out n find out that they have not stopped jumping so I run another 1. All I want to do when I get in the bath is go to sleep, one day I will end up going under the water I’m sure

I had to take myself off the road n stop work atm as I can not sleep of a night, but once I get in the car n start driving then I want to go to sleep, so I decided to stop work and driving atm until I can hopefully get this under control, I was also scared that I may nod off behind the wheel and hurt someone

So now I am hoping on a miracle from somewhere please????

Thank you for reading

LotteM
LotteM
in reply to cdtofi

Read my post of 2mo ago. Your story has the ring of it that the Sifrol makes your symptoms worse. Thus: augmentation. Get help and reduce. Slowly. Maybe with the reduction of the the Sifrol you should increase your Lyrica, although I don't know what is a wise and safe upper dose of Lyrica during DA withdrawal. Things may well get worse before they get better, because you already tried various opioids. They are often a go-to medicine during DA withdrawal.

It may be wise to seek the help of an established and experience RLS doctor. As you seem to be in the the US, have you contacted rls.org to get you a nearby 'approved' specialist? They have a list.

cdto
cdto
in reply to cdtofi

Thank you again LotteM

I believe me retiring will not be that far away, so the plan is to go down on Sifrol and try to get off others then, as it will not worry me as much with lack of sleep. So I am to see a Dr through Skype next week so I am hoping that will go well.

So when it all starts I will keep you posted. Thank you for your continued help

Would you please advise me where I would find the list of Antidepressants advised with RLS meds please?

LotteM
LotteM
in reply to cdto

Hi cdto, rlshelp.org has a discussion on antidepressants on its webpage 'RLS/PLMD Treatment page'. Very detailed, and some info has been on it for a long time. Also the rls-uk.org website has fairly extensive info on medication to avoid: rls-uk.org/treatment.

I hope you find a good way AND good help and support. If in the not too distant future, waiting for your retirement may be wise, provided your current situation is manageable for the time being.

Keep in touch to get help, advise or a rant - if needed.

cdto
cdto
in reply to LotteM

Thankyou LotteM

Im just reading below that I missed before

Panadeine Forte in Aust has Codeine in it so that does a bit of good.

Meeting with a Dr on Internet this week so hoping on a Wonder Drug(I wish)

I have come a long way I think. I was on Sifrol 3 mg ER for years now I am down to 1 mg atm.

I also got rid of Endep.

So all I take now are Sifrol 1 mg & Lyrica 75 mg. So I am getting further down.

I have also finally weined myself down off the Patches as they just did not work they made my legs crazy.

I can no longer take Oxycodene as that no longer works for me either

I am not feeling very agitated so I think I need to run my 2nd bath for the day and it isnt even dark outside yet lol

Thanks again

LotteM
LotteM
in reply to cdto

Well done 👏🏻 for reducing your meds so far and by yourself. I think that is courageous. When you're up to it and if it is needed because the RLS symptoms are still too strong, try reducing the Sifrol further while increasing the Lyrica. As ever: in consultation with your doctor as I am not an MD.

cdtofi
cdtofi
in reply to LotteM

I seem to go down in pills but legs seem to get worse. Does this continue like this forever. Is there hope that my legs with stop ?

If so then where do you think they came from in the beginning???

Thank u again

LotteM
LotteM
in reply to cdtofi

With the dopamine agonists, like Sifrol, this happens when they have stopped working ad/or started to make things worse (augmentation). Sometimes a reduction suffices, most often one has to stop them completely. You were on a very high dose of Sifrol and still are on a relatively high dose. I suspect your symptoms will not improve until you've stopped taking Sifrol (after tapering down, don't stop at once!) and even then may take weeks or more to settle. Usually, one also needs an effective replacement medicine. In your case that could be the Lyrica.

Please read up on augmentation and how to treat that. If you need links, ask, and I or someone else will find them and add them here.

cdtofi
cdtofi
in reply to LotteM

Thankyou again LotteM

Hi that is very good news.

Are you still on the meds you listed 3 months ago? Sorry for not replying to that post. If you are, you need to know that:

1. Panadeine is just paracetamol, a general otc painkiller. It does not help with RLS, but it can potentate other meds and you may need it for other ailments (arthritis?). If not, no need to take it.

2. Endep (amytriptyline) is most likely making your RLS worse. Should be the first med to reduce and get rid of. I hope you do not need it for something else, such as anxiety of depression. If you do, discuss an alternative with your doctor. For depression, wellbutrin and trazodone are ones that generally do not make RLS worse. All the others do!

3. Sifrol (pramipexole) is a dopamine agonist (DA) like ropinirole is, but stronger. And DAs are used to treat RLS. However, all DAs have a high chance of making the RLS worse sooner or later. The RLS will then start sooner after taking your med, earlier in the day and may spread to other body parts. This is called augmentation. You may suffer from augmentation - as you have been told before - because your earlier/current dose of 2x1mg is still extremely high. After you have gotten rid of the Endep, you should reduce the Sifrol. Slowly, very slowly and in small steps, as each reduction will temporarily worsen your RLS (withdrawal). Have your pharmacist change your pills to smaller unit ones. Do some reading on this forum, because there are many posts/replies explaining how to go about reducing a DA.

4. Pregabalin is used to treat RLS. In trials is was proven to be as effective as pramipexole (Sifrol). It may also help against nerve pain and anxiety. At least it surely does not worsen your RLS. After you have gotten rid of the Endep and Sifrol and gotten through any withdrawal and the symptoms have settled, you may find the the pregabalin suffices to control the symptoms. If so, you will no longer need the Norspan (buprenorphine). Or, you and you doctor may decide that you remain on the Norspan (maybe a lower dose will suffice) and the pregabalin will prove to be redundant.

All in all, quite a process to go through. The Norspan may make it easier than for other who have trouble getting opioids prescribed. The process I described and suggest is built on personal experience and the experience of many others here on this forum and knowledge gained from scientific publications. BUT, and this is important, discuss all with your doctor, as I am not a medical doctor. Keep in mind the aim to take as little meds as possible to control your symptoms. Good luck. Enjoy the current relief and keep is posted.

Lotte M

Thanku so much for all that info

Endep has gone a while back

I am going on a small holiday when I come back I will be reducing all drugs but will keep u posted

Thanku so much for the time it took u to write all that. It will be a great help

All the best

LotteM
LotteM
in reply to cdtofi

Enjoy your holiday! A change of place and pace often helps a bit.

cdtofi
cdtofi
in reply to LotteM

Thanku 😃

Hi LotteM

Thank you for all that

I am in Tasmania so no RL specialist. Only Neurologist in another State. I tried 12 of them when I lived in Qld, but they have never been able to control me.

I’m told that I am a very complex case as I feel that Anxiety mostly controls my symptoms & they can not understand this but it’s my body n I feel that the Symptoms I have are from Trauma , maybe you can not understand this either, but I do.

I am not trying to be rude or disrespectful, I Just say it as it is

Endep went a long time ago

No the Morpheine patch will not work

I take Panadeine Forte for Arthritis & it has Codeine in it

I’m sorry but I have tried many times to understand what Augmentation is. I have always had this problem it has always been the same since way back, I believe so do the drs that my case is rare n they have never mentioned Augmentation, but on the other hand they have no idea about my case

I’m on 1.5 Sifrol so that’s the killer aye?

75mg of Lyrica. I have started taking one of these morning n night.

I do not understand how to refind these messages each time I come back to the site

Thanks again I had better go walk these dogs that keep looking at me lol

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