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Restless Legs Syndrome

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Robynasmith profile image
16 Replies

So I’ve managed to convince my GP that I’m suffering augmentation.

Med change starts today

Pramipexole dropped by a third

Tramadol dropped by a third

And 60mg of duloxatine introduced

I think I’m in for a bad night

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Robynasmith profile image
Robynasmith
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16 Replies

Is there something added in to take into consideration the drop in meds? To me, if you are not preparing properly then you are making a difficult task near impossible.

It may be worthwhile talking with your GP about getting a little codeine or Lyrica to take the edge off the withdrawals - a big drop in Tramadol alone can cause restlessness.

If you can safely access cannabis you may be able to offset any of the more negative issues.

Best of luck.

Robynasmith profile image
Robynasmith in reply to

She seems to think the duloxatine will compensate

in reply to Robynasmith

She should bloody well think again! There are many here who have taken that and it had made things much worse. My GP tried it with me, adding it in mind - not replacing anything. It sent my RLS symptoms through the roof.

Take a read at this:

rls-uk.org/treatment

Robynasmith profile image
Robynasmith in reply to

Wonderful Bad times ahead for me then

in reply to Robynasmith

1 Dropping pramipexole by any more than 0.0625mg (that's half a 0.125mg tab) runs the risk of causing major withdrawal effects. In which case if you're taking no more than one and a half 0.125mg tabs, your withdrawal effects may not be so bad.

2 Dropping the tramadol will also have its own withdrawal effects. Keeping the same dose or even INCREASING it, might control the withdrawals from the pramipexole.

3 Duloxetine, like most antidepressants can make RLS worse.

Your GP is ignorant and it may not be just one bad night she will cause you. She is reducing two medicines at the same time which will make your RLS worse and on top of that prescribing something that will also make it worse.

I suggest you do NOT take duloxetine.

This is how the National Institute for Health and Care Excellence (NICE) suggest augmentation should be treated.

cks.nice.org.uk/topics/rest...

Note the parts which say -

Measure serum ferritin level.

The role of other medicines e.g. antidepressants and opioid discontinuation.

Replacing the DA with an alpha 2 delta ligand.

You can refer your GP to this, she cannot dispute it!

Robynasmith profile image
Robynasmith in reply to

I’m speaking to a student doctor today After no sleep last night

I’m going to send her both links

Thank you

in reply to Robynasmith

I was going to ask how you got on last night, I don't think I need to. If it is any consolation I spent last night rolling on the sofa, although I am sure it wont be.

Manerva has given some good info there. It is a pity you have to come to a website to gain knowledge your Dr at the very least should be able to look up if they are not already familiar with the condition.

I can't imagine any other job where people are confronted with a new issue and refuse/neglect to check current practices or how it has at least been attempted elsewhere.

If you can access cannabis safely it will help a little during this time and as Joolsg says I'd stay on the Tramadol, maybe even increase it as you decrease the DA - if you have room to do so.

Sootired15 profile image
Sootired15

Hi Robnasmith, I hope you managed a reasonable night after your meds change. I find it so sad that some GP's don't recognise either RLS or Augmentation. Thankfully, mine was understanding, still didn't know what I meant but agreed to check. Fingers crossed yours will help you now & things get better. I'm still waiting from beginning of October for a specialist to do a telephone consultation. The current situation makes it more difficult. Good luck 🤞

Joolsg profile image
Joolsg

I’m so sorry you’re going through this. I’m also sorry to read another appalling story of GP ignorance & negligence.

As others have advised, the slower you reduce these drugs, the better.

Duloxetine will make it worse & your GP clearly knows absolutely nothing about RLS.

I’d stay on the tramadol- you’ll need it to deal with the withdrawal symptoms from pramipexole reduction.

4fishylady profile image
4fishylady

Please research Duloxetine thoroughly before you continue taking it. I found it to be the absolute most difficult medication to get off of, period. My daughter who is a nurse, read that is was designed to have the patient never come off of it! It made me numb to all emotions! You might not mind that too badly, but I did. I was on it for almost 2 years. I was also very irritable while on it. I weaned myself off of it gradually, against my Neuro's wishes, but I did it. I, also, did not realize how much of a grip it had on me, and that I had to have another Rx, or two, to get me through the withdrawals. I had asked for Lexapro, which he gave me, but my acute depression was so bad that I had to also have Xanax for a couple of months to get me through that time. I have used Lexapro at two other time periods, like when my son was in Iraq, and found it very easy to wean off of that antidepressant. Please get yourself to a Neurologist for help with this and do not continue taking Duloxetine.

Robynasmith profile image
Robynasmith

Last night was horrific I ended up resorting back to full pramipexole dose until I can get a response from my surgery

They are only taking internet requests now and you have to wait for a call back

I’ve been advised I will be waiting until Monday

I can’t spend till Monday pacing and waving my arms about so I’m back to pramipexole until they contact me

Joolsg profile image
Joolsg in reply to Robynasmith

I suspect they won’t offer any help because most GPs in the UK know nothing about RLS. They just look it up on their medication book, see that Pramipexole or Ropinirole are the drugs of choice & prescribe them without realising the horrible side effects awaiting the patient.

The only way to deal with the augmentation is to slowly get off pramipexole- the slower the better, & take tramadol 50mg every 4 hours during the worst flare ups as you reduce the dose.

However, you may be able to convince your GP to give you Temgesic. Puzzler1 was able to reduce the pramipexole with the help of Temgesic so read all the posts.

Withdrawal isn’t easy- it’s horrendous, but until you get off pramipexole, the awful intensity of your RLS will only increase.

Print off all the info from the posts about Buprenorphine/Temgesic and send to your GP in advance of the appointment so they can consider the evidence.

Robynasmith profile image
Robynasmith

Hi all Am weaning off the duloxatine

They’ve given me amitryptaline and I’ve been told to increase the dose over the next week then take the pramipexole down by a third, I questioned the rate and have been told to bring it down as slowly as I wish

I will start to reduce mid next week

Kaarina profile image
KaarinaAdministrator in reply to Robynasmith

Let's hope you are in the 1% that can tolerate Amitriptyline. For 99% of RLS sufferers it make symptoms much worse.

Robynasmith profile image
Robynasmith in reply to Kaarina

Oh for goodness sake Why do they keep prescribing me the wrong thing

Kaarina profile image
KaarinaAdministrator in reply to Robynasmith

Because they do not take time to look at the RLS-UK website! rls-uk.org and look at this link on there which has the heading Medications to Avoid: rls-uk.org/treatment

Wellbutrin (not available in the UK) and Trazodone do not generally worsen RLS. Mirtazapine (Remeron) will worsen RLS for a small minority but not everyone.

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