Changing medication: I've been using... - Restless Legs Syn...

Restless Legs Syndrome

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Changing medication

Martyrtothecause profile image
9 Replies

I've been using the 2mg/24hr Transdermal patches for RLS for YEARS. As they seemed to becoming less effective I visited my GP. He sought advice from a hospital consultant who simply said to increase the dosage. Not satisfied with this response I asked for a referral. This has resulted on me fazing out the patches and being prescribed a daily dose of 25mg pregabal. This dosage seems particularly low compared with those of you who've posted information here on the HealthUnlocked site.

Any site points of you or advice would be welcomed.

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Martyrtothecause profile image
Martyrtothecause
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9 Replies
Madlegs1 profile image
Madlegs1

Great you got good advice, eventually.Pregabalin starts at a low dose and titrate up until getting a response/ effect.

Joolsg profile image
Joolsg

And has the consultant warned you about Augmentation? He ( and it will be a he) is supposed to first warn of Impulse Control Disorders and Augmentation. Before advising dose increase he should have ordered blood tests and ensured your serum ferritin is above 100. Raising ferritin can sometimes decrease the risk of Augmentation.For future reference, here is the algorithm for Augmentation if it happens to you.

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Martyrtothecause profile image
Martyrtothecause in reply to Joolsg

Thanks. This is useful.👍

Hi, both Madlegs and Jools are correct.

Whoever prescribed you rotigotine (the neupro patch), should have warned you about augmentation caused by dopamine agonists.

Luckily, you are apparently being taken off the patch and put on pregabalin. Pregabalin is not a dopamine agonist agonist and has a much less risk of augmentation. This switch then is the correct thing to do.

25 mg is a low dose of pregabalin. The usual starting dose is 50 to 75mg, but sometimes Drs worry about the initial side effects which can cause you to fall, so might start on 25mg. Because of this effects only take it at night.

After that the dose should be gradually increased until it becomes effective.

Please be aware that it may be 3 weeks before it becomes effective.

Note also that a typical minimum effective dose is about 150mg.

During those weeks, it may seem side effects are awful and the drugs not wirking. Some people stop taking it. Give it 5 weeks at least.

If your Dr has only given 25 mg tablets and no instructions on how to increase the dose then he may be in error. I suggest you check about this.

Here's a link to the UK national prescribing guidance for Pregabalin for RLS.

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

The other thing is hopefully your doctor has correctly told you how to gradually wean off the patch. What have they told you?

Martyrtothecause profile image
Martyrtothecause in reply to

I've gradually reduced the patch over months. I'm now just having 1mg every other day. The consultant who prescribed Pregabalin suggested that as I'm taking such a small dosage I shouldn't encounter any problems by just stopping altogether now. To be on the safe side I think I'll go down to 1mg every 2 days before stopping altogether.

Thanks for the information. I'm most grateful

👍

Joolsg profile image
Joolsg in reply to Martyrtothecause

Most consultants have NO idea about dopamine agonist withdrawal. For the majority, getting off them is hellish, with days of non stop RLS and no sleep at all. I went 4 days without sleep and non stop body jerks. That's why most people reduce by 0.25mg every 2-3 weeks. I attach a photo of the written advice John's Hopkins University gives to their RLS patients. A woman on a facebook group posted this, so there's no website. This isthe stage when most people give up trying to get off DAs. I only know of about 2 or 3 people out of hundreds on here who have not had a difficult withdrawal. It seems that the slower you withdraw the better and also increasing the dose of pregabalin by 25mg every 3 or 4 days until you reach 150mg seems to help. The average effective pregabalin dose fot RLS is 150mg but it takes 3 weeks tobe fully effective.I hope you're one of the minority that has a manageable withdrawal.

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Martyrtothecause profile image
Martyrtothecause in reply to Joolsg

Thanks Joolsg. Very helpful

involuntarydancer profile image
involuntarydancer in reply to Martyrtothecause

Jools is absolutely correct. You should reduce as slowly as you can and be guided by your own feelings. You can cut the patches in two and ultimately 4 to lower the dose gradually. Also, take a week or two between each reduction.

It is worth ensuring that your serum ferritin is high during the withdrawal process as there is some evidence this helps. You can get a test with your GP.

25mg pregabalin is very low and it’s most unlikely it will help with symptoms at that dose. You will need to increase gradually as Manerva says.

Unfortunately, pregabalin won’t help with the increased symptoms that withdrawing from the patches is likely to produce and you should try to persuade your GP to prescribe a temporary dose of opioids for this.

Keep taking the pregabalin because eventually it’s beneficial effects should kick in. Definitely stick with it for at least 5 weeks.

Unfortunately, there seems to be an appreciable cohort of sufferers for whom pregabalin does not work - this seems to be greater amongst those who have been through augmentation. So it is possible you will have to look at a supplemental/alternative treatment.

in reply to Martyrtothecause

Sorry to contradict your consultant but it has been found that the lower the dose of a dopamine agonist, the worse the withdrawal effects are when you reduce the dose.

It's also better to reduce a dose consistently not put it up and down by missing days. Certainly with tablets that would possibly worsen the withdrawal effects overall.

The usual way to reduce the dose consistently is to cut the patches. With 1mg patches you could cut them in half and apply a half patch every day for a couple of weeks before stopping.

Some people actually cut them in quarters, since even reducing by 0.5mg at a time can be too much. 0.25mg is advisable.

That would be 3 quarters for two weeks, then a half patch for two weeks then one quarter for two weeks.

I wrote this before I read Jools or involutarydancers replies, so I didn't know what they'd written, but you can clearly see we're all saying the same thing .

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