Advice on pramipexole medication I am... - Restless Legs Syn...

Restless Legs Syndrome

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Advice on pramipexole medication I am taking and should I stop

Pupski profile image
9 Replies

Hello

I have been on 0.26 pramipexole prolonged release table for many years, my legs and arms are terrible lately and haven’t slept for three nights, reading posts I think I am augmenting ?

The dose I’m on is it high ?, can I stop, if not how do I cut down ie half tables, unfortunately my doctor is not very sympathetic, I am at my wits end 😩

I am 57 non smoker, goodish weight, ride a road bike and also taking Prozac again for many years and have just started HRT.

Thank you

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Pupski
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9 Replies

Hi Pupski.

Since you say that your arms, as well as your legs are terrible then that would suggest you are suffering augmentation. The dose of pramipexole you're taking is not particularly high, but that may only have affected how long it's taken for augmentation to happen.

The pramipexole is obvkiously not working so the best solution ios to wean off the pramipexole.

There is one other factor in your case. Prozac is an SSRI antidepressant and these are known to make RLS worse. I experienced this myself years ago and suspect if I'd ndever had an SSRI, I would never have had severe RLS, never taken pramipexole and neverv suffered augmentation. However, I nhaven't tkane an SSRI antidepressant for many years, have stopped the pramipexole and raely usffer RLS symptoms.

If you started on the prozac before you started the pramipexole, you may be in the same situation I was in.ole and neverv suffered augmentation. However, I nhaven't tkane an SSRI antidepressant

Prozac, or any other antidepressant should only be taken fior a short while, months, not years. For a single episode of depression or anxiety it should not be necessary to take it for any length of time.

Even for recurrent depressionnor anxiety, it should not be taken continuously and psycholgical thefrapies are now available that are as effective and can help prevent recurrence.

It will be better for your RLS if you wean off the prozac and if necessary seek non-pharmacological therapy.

Nor should you consider switching to a tricyclic antidepressant.

It's unlikely, but possible that your RLS may improve after a while by stopping the prozac. Unfortunately, as you're now suffering augmentation and also as ramipexole can cause more permanent damage I would consider stopping the pramipexole.

You cannot suddenyly stop taking a dopamine agonist (DA) like pramipexole. This is dangerous.

I have to break here, I will write more later on some suggestions on how to get off pramipexole.

Hello again.

For weaning off pramipexole you have to have a plan. This involves 3 things

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1) Considering what to replace the prami with

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2) Reducing and stopping the prami

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3) Dealing with withdrawal effects

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1) Altough augmentation will lessen by withdrawing from the prami, it's highly likely that you will still have some RLS symptoms which may require medication. It's a good idea then to start on a replacement medication before stopping the prami.

There s no point in switching from prami to another dopamine agonist, they all cause augmentation.

There are options, but the standard alternative "first line" medication for RLS is either gabapentin or pregabalin. Since these take about 3 - 4 weeks to start working you could start taking one at least 4 weeks before you finally stop the prami. You can take one of these and pramipexole at the same time and it may help reduce withdrawals, so you could start taking it before reducing the prami. They do NOT cause augmentation.

2) withdrawing from a dopamine agonist (DA), especially after taking it for years will cause withdrawal effects. These usually take the form of a temporary worsening of the RLS symptoms and sleeplessness. Things will get worse before they get better.

Withdrawal effects can be minimised by reducing the DA very very slowly. I've recently read a reliable source saying this should be over at least 3 months, longer would be even better.

The usual way is to reduce the dose in steps of a paricular amount over a particular time period. E.g. I reduced pramipexole by reducing it in steps of 44ug (0.044mg) every 4 weeks. I did this by cutting the tablets.

You can NOT cut extended release tablets !

If you go ahead with this then, your first step will have to be to switch from extended release (ER) to immediate release (IR) pramipexole.

Note - one mg = 1000ug (micrograms) so 0.26mg = 260ug

There is no apparent exact equivalence between ER and IR tablets. You will have to consult your doctor.

However, in overall doses the nearest equivalence to 260ug of ER is one 180ug tablet PLUS one 88ug tablet.

However, since the ER version is released more slowly, the level in the blood stream never gets quite so high as it does for the same amount of the IR version.

SO you may be able to switch from 260ug ER patch (at the end of 24 hours) to one 180ug IR tablet plus one half of a 88ug IR tablet i.e. 44ug. If you do this for 4 weeks you will need 28 180ug tabs and 14 88ug tabs.

After 4 weeks you can reduce by 44ug i.e. down to 180ug. To do this for 4 weeks you will need 28 more 180ug tabs.

After another 4 weeks you can reduce by another 44ug. This is one 88ug tab and one half a 88ug tab. To do this for 4 weeks you will need 42 88ug tabs (28 whole ones and 14 in halves).

And so on.

Because the final reduction from the lowest dose to nothing is the hardest, I reduced to 22ug (quarter of a 88ug tab) for 4 weeks, before stopping altogether.

If you find that withdrawal effects after each reduction lessen after less than 4 weeks then you can reduce eralier. As the dose gets lower you may find it takes longer.

3) Many people find this process very difficult. Sleeplessness if often the thing most difficult to deal with.

As well as reducing slowly to minimise withdrawal effects, especially in the last month. Some people find taking a sleeping tablet helps. Some people manage to get a prescription for an opiate. Opiates can help, the diffculty is getting a prescription.

There are lots of non-pharmacological methods of relieving RLS symptoms which you can read about on this site and which may help.

I recently described dealing with augmentation by stopping the DA as crashing through a wall. It hurts on the way, but it's so much better on the other side.

If you need support or more information you can come to this forum as often as you wish. It's good to hear from people who are dealing with their augmentation to see how it's going for them.

Questions are welcome.

Pupski profile image
Pupski in reply to

Thank you I now have a plan, will see doctor ASAP I will keep you posted

Pupski profile image
Pupski in reply to

Hi Manerva

Since my last post I have stopped Prozac in fact the day after, cold turkey, so far I am doing ok depression wise.

I have changed my tables to pramipexole 0.18 & 0.088 mg, I have decided to try without any other medication.

As I told my doctor what I wanted, I have not given any details on what time to take, when on the ER i took one table at 8 pm, could I ask if I should take one 0.18 and half a 0.088 at this time ?

I would like to thank all who have posted, when I am climbing the walls in the early hours of the morning, I often read posted and obtain information which I try to help live with this condition

Thank you

in reply to Pupski

Not realy a good idea to stop taking the prozac cold turkey, but it seems you have survived that so no harm done.

I see you've chosen not to replace the pramipexole with anything else, this is your choice and it's possible you may manage without anything.

It may be a good idea for you to still explore psychological strategies for dealing with/preventing depression. If you ever need an antidpressant in future, there are some that are safer for somebody with RLS e.g. trazodone or nefazodone.

The best time to take a dose of immediate release pramipexole is 2 - 3 hours before bedtime. Timing is quite crucial because it starts to achieve full effect 2 - 3 hours after taking it, i.e. when you're trying to get to sleep.

You may find if you take it too late, RLS symptoms may start before you take it, but if you take it too early, you wake up too early. It is hence best to take it the same time almost exactly every day irrespective of when symptoms occur.

Like many sufferers, I set an alarm on my phone to remind me to take it.

When you reduce the dose, symptoms may get temporarily worse, in this case, I still wouldn't vary the time you take it.

Good luck and let us know how you get on.

Pupski profile image
Pupski in reply to

Thank you

I will keep updated

Fingers crossed

in reply to Pupski

Remember to reduce slowly, months rather than weeks. This will reduce withdrawal effects.

sjw_1978 profile image
sjw_1978

I weaned myself off pramipexole earlier this year. Gradually reduce the dosage over a period of weeks and I take pregablin instead which as others have said take 3-4 weeks to work.

It isn't a magic solution but I feel far better off the pram. I was dependent on it and it was actually making me worse not better. I still. Have RLS and there are good and bad days, but it I feel far more human these days.

Good luck.

Joolsg profile image
Joolsg

Manerva has given you excellent advice. The prozac worsens RLS. HRT doesn’t make a difference for most people.

Reduce the prozac and also get off the pramipexole, as slowly as possible ( minimum of 3 months, up to a year is recommended by US experts).

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