Advise needed.

I've been on the highest dose of pramipexole for 3 years now and I think it's stopped working because I can't keep my arms and shoulders still.

I get pains in my hands and arms now.

Any advice welcome please.

[Nlthomp]

Hi Spike, I’m no expert and am having problems of my own. I wanted to reply to lend support. I’ve been on Ropinirole for about 8-10 years, but at some point switched to pramipexole when it was no longer working. Unfortunately, that didn’t help, so I went back to Ropinirole about seven years ago. From what I’m reading on this group, there may be meds now that are better suited to treat RLS, such as Gabapentin and Pregabalin. I’m finding that some of my meds are interacting with others in a negative way. I wish I could offer you more insight. There are people here that are very knowledgeable and have been incredibly helpful. I’m not one of them, just trying to offer support 😊

[LotteM]

Hi Spike, what you experience is called augmentation. Please search this forum, or turn to rls-uk.org for more information. Augmentation is a paradoxical worsening of symptoms. Occurs with dopamine agonists (DA)(pramipexole, ropinerole and rotigotine (Neupro)). Get yourself thoroughly informed, as most doctors are not familiar with the phenomenon of augmentation. Don't increase your dose of pramipexole and don't switch to another DA. But start on another medicine, most often gabapentin or pregabalin while still taking the pramipexole and build up the gabapentine dose slowly. Then, very slowly reduce the pramipexole, adjust the reduction rate to the severity of your symptoms that may increase site every reduction. Often, when the increased symptoms (withdrawal) are particularly bad, your doctor may temporarily prescribe an opioid (often tramadol or oxycodon). Inform yourself, talk to your doctor and make a plan together. Afterwards, you will be better. Many people, including me, can testify to that. Personally, I couldn't stand the side effects of gabapentin, it made me depressed and didn't help anyway. I am now taking slow release oxycodon.

Good luck in your journey and keep posting.

[Hidden in reply to LotteM]

Thanx for your reply I appreciate it. I'm also on sertriline so worried about any interaction with it.

[Nlthomp in reply to Hidden]

Accordingly to others on this site, it appears that Citalopram, which I’ve been taking for 25-years for panic/anxiety, may be interacting with my RLS.

[Joolsg in reply to Nlthomp]

Maybe consider diazepam or clonazepam or pregabalin. All will help anxiety and are also used to treat RLS.

[Nlthomp in reply to Hidden]

I think that sertraline is also an SSRI

[Hidden in reply to Nlthomp]

It's is. Does that mean it's not good with pramipexole?

[Nlthomp in reply to Hidden]

From the replies I’ve received, SSRIs aggravate RLS. Others may have detailed information

[Hidden in reply to Nlthomp]

Thank you. I was beginning to think I was loosing it not being able to control my body.

[Nlthomp in reply to Hidden]

I’m in the same boat, Spike. Hang in there 👍🏼

[Hidden in reply to Nlthomp]

It's horrible isn't it.

I was trying to play a game on my tablet the other day.

Omg I couldn't because I couldn't keep my arm still. 🙄

[Joolsg in reply to Hidden]

Sertraline is an anti depressant that worsens RLS . Trazodone and Wellbutrin are safe options. Avoid anti histamines as well.

As Lotte advises you are experiencing Augmentation and need to reduce pramipexole very, very slowly.

[Hidden in reply to Joolsg]

Omg! After thinking I've found a antidepressant that works for me.

I've just come out an abusive relationship and attempted suicide twice.

Oh well. Gp here I come.

[Joolsg in reply to Hidden]

So sorry to hear that. Withdrawal from dopamine agonists is hellish so take your time and find an anti depressant or anti anxiety med that also helps RLS- diazepam, clonazepam or pregabalin.

I was put on Amitriptyline for nerve pain and didn’t sleep for days- my whole body was jerking. The neurologist who put me on them had no idea SSRIs and SNRIs made RLS worse.

[Nlthomp in reply to Hidden]

Suicide is not the answer, Spike. There are answers out there for you.... just investigate and seek them out. You can always find support here 🙌🏼

[Hidden in reply to Nlthomp]

I know that now. I was very depressed and desperate at the time. I seeked help from the mental health team.

I'm in a good place now, I just gotta sort out these Jerks.

[Nlthomp in reply to Hidden]

🙌🏼

[Nlthomp in reply to Hidden]

How are you feeling today, Spike? I imagine you’re sorting through all the information and coming up with a plan. Just checking in, RLS friend :))

[Hidden in reply to Nlthomp]

Trying to figure out what to say to to gp.

I've just moved so it'll be the 1st appointment.

The constant pains in my hands and arms are getting to me now.

[Nlthomp in reply to Hidden]

Hang in there, buddy. Are you in the US or UK? There are many options for treatment, but they’re not always easy. You can do it! Perseverance and knowledge are the keys. We’re here for you

[Hidden in reply to Nlthomp]

I'm in the UK. What about you?

[Nlthomp in reply to Hidden]

I’m in the US

[Joolsg in reply to Hidden]

rls-uk.org/treatment

The main website of rls UK sets out the meds to avoid.

[Hidden in reply to Hidden]

Hi Spike, Sertraline is not an anti depressant that RLS suffers should use. It is known to increase the symptoms of RLS so please discuss with your GP an alternative if you need to take something. Doctors seem to be unaware of the effect of anti depressants on RLS sufferers.

I can see others have told you that you are likely suffering from augmentation from the Pramipexole thus causing the severity of symptoms you are getting in your arms and shoulders. As per others advice, getting off this med gradually and changing to a non dopamine agonist med will get rid of the augmentation.

Hope you can see your GP soon and get some more appropriate meds that will provide you some relief.

Wishing you well. 👱‍♀️

[Hidden in reply to Hidden]

Thank you.

[remry in reply to LotteM]

This was very helpful. I am going to my doc to increase the Ropineraole dosage I am really struggling. I don't if my RLS was just genetics or result of intense chemotherapy? Maybe I should discuss with my doc a protocol of gabapentin or pregabalin ?

[Hidden in reply to remry]

From the advice I've just been given, I'd go ahead and discuss with your doc.

[Lapsedrunner in reply to remry]

remry, if your original dose is now not working, you’re getting symptoms earlier in the evening, restlessness in other areas of the body, you are probably experiencing “augmentation” too. Read the advice already given, and don’t be tempted or advised to increase your dose of ropinirole, which is a dopamine agonist

[remry in reply to LotteM]

Does the slow release oxycodon work? are you concered with the addiction to oxycodon?

[Hidden in reply to remry]

I don't know. I've never heard of oxycodon.

[LotteM in reply to remry]

Yes. It works very well. It is the main and active ingredient of Targinact, that is licensed for RLS according to the NICE guidelines. I am outside the UK, but from inside the UK you can access them.

[Lapsedrunner]

Hi Spike73,

sounds as though you are now experiencing “augmentation” from pramipexole, LOTS of us have trodden that path before you.

First of all you need to read the pinned post regarding this on the main page.

Don’t increase your dose, even if your dr suggests it. You are going to need to very gradually decrease your pramipexole and eventually stop them. Things will most probably get worse before they get better but there are other medications that can help. I suggest after you’ve read up about it, take the info with you and talk to your GP and make a plan. Get your ferritin levels checked (read the pinned post about iron too, and take the info with you) We RLSers need our ferritin to be 100+ (despite so called “normal “ being 15+!)

Don’t take another dopamine agonist (the group pramipexole belongs to) as the same thing will happen again. Gabapentin/pregabalin would be your next port of call and don’t lead to augmentation.

There’s lots of help on here for you, we really do understand and want to help others get through it.

All the best

[remry in reply to Lapsedrunner]

Thanks for the advise. I am seeing my GP this Friday January 31st

[Hidden]

Hello Spike

Just to encourage you with what's been said so far.

If your experience is the same as mine then following the suggestions you've been given should be like getting your life back.

I used to have mild RLS until 2009 and after a course of citalopram, an SSRI antidepressant, it became severe. I started on pramipexole and increased it up to 0.75mg. I eventually suffered augmentation as you described it.

I only really learned about augmentation in 2018 and it was also a revelation to me that it could be treated with alternatives.

In my case gabapentin works for me. I was taking it anyway for nerve pain. I weaned off pramipexole and now only take gabapentin. I hardly have any symptoms at all.

The sertraline is an added complication and it would be best to wean off that too, again slowly. Like pramipexole, there can be withdrawal effects. I weaned off citalopram slowly but still had some withdrawals. The most disturbing was a sensation commonly called "brain zaps".

I have been through a few traumatic relationship breakdowns.including two divorces and may have some appreciation of what you might have been going through.

This is something that you can deal with given the right help. You should only take an antidepressant short term. Hopefully, your mental health team is at least providing you with counselling and hopefully CBT (cognitive behaviour therapy), this will help you deal with the aftermath of what happened to you, but also enable you to be able to deal with things more effectively in the future.

It may be difficult to wean off both sertraline and pramipexole at the same time, so as suggested, a benzodiazepine might help, as well as getting support from other people and a counsellor.

I would encourage you to follow the advice given here. It worked for me and you will hopefully find that your experience will improve dramatically once the augmentation is resolved.

[Hidden in reply to Hidden]

Hi Manerva.

Sorry to be a nuisance, but I can’t find the post where you gave me information about rotigitine and gabapentin.

I going to make an appointment to see my doctor as soon as possible because I’m not sleeping at all at the moment. I just want to make sure I’ve got my facts right before I go .

My drug history started with pramiprexole, starting at the lowest dose and increasing it over roughly 8-10 years as it became ineffective. When the highest dose allowed for RLS became ineffective, I was prescribed Rotigitine patches. I started with 2mg but I soon needed 3 mg and then of course 3 mg no longer worked.

So at the moment I’m still using the 3 mg patch but also taking 300mg of gabapentin.

For a while this worked but now, as soon as I start to nod off, it feels as if I’m trembling from head to foot. I’m not actually trembling though, it feels as if it’s happening on the inside. This is different from the normal RLS crawly feeling .

So here’s what i want your opinion on. Firstly does that sound like augmentation to you, secondly, do I need to increase the dose of gabapentin to 900 grams and then gradually phase out the rotigitine?

Thank you

[Hidden in reply to Hidden]

Sorry for the delay in replying, I'm out of time with UK time at the moment.

It is possible that the all over trembling you feel is related to RLS, but it doesn't truly sound like it and it doesn't sound like augmentation.

When I suffered augmentation the symptoms were the same as they had been before, only more intense. In my case the crawly feeling didn't last long and it turned into twitching.

As in "classic" augmentation, the twitching spread from my legs to my arms, shoulders and abdomen

The symptoms started to happen earlier in the day and at its worst, anytime at all.

Finally, the symptoms started much quicker after relaxing or lying down.

This is classic augmentation

RLS symptoms the same but more intense

Symptoms spread to other parts of the body

Symptoms occur earlier in the day

Symptoms start more quickly.

This doesn't sound like your description.

Your description does sound more like tremors so you do need to check.it out with your doctor.

In any event, I always urge people to try gabapentin and wean off any dopamine agonist if their is any issue..

By all accounts it seems at keast 900mg is needed to be effective with RLS.

uptodate.com/contents/treat...

[Hidden in reply to Hidden]

Understood.

Hugely appreciated.

Thank you.

[Nevermind61]

I have a problem with pramipexole I had at the start been up to 6 tablets at night which did help apart from my feet and ankles swelled up terribly so I started to cut down and for 2or3 years my legs were mostly ok. Then over a year ago the rls is back with a vengeance so my doctor suggested increasing it in stages so I gradually went back up to 6 but my feet and ankles are so swollen again so at the minute I am slowly going back down in dosage. I feel despondent that I have had to increase and now decrease it. I am sleeping so little at the moment I don't know how I am managing.

[Hidden in reply to Nevermind61]

Sound like me I'm having problems with pramipexole at the moment. I've been advised to go to gp and get off pramipexole and onto something completely different as they making symptoms worst in the long run.

I'm on the highest dose, they not helping anymore after 3 years.

[Hidden in reply to Hidden]

See my reply to Nevermind61, you are in the same boat, probably suffering augmentation and ideally should stop taking pramipexole.

Nor should you agree to switching to ropinirole or rotigotine. There seems little point in replacing one dopamine agonist that causes augmentation with another dopamine agonist that also causes it.

[Hidden in reply to Nevermind61]

Hi

There are different strengths of tablets, so I'm hoping that you mean the 0.088 mg tablets. There are 0.18mg ones which are twice the dose. 3 of these would be equivalent to 6 of the smaller ones.

If you were taking 6 of the smaller ones this is a very large dose. Although it is the official UK maximum, there are RLS specialists who would say it's too high.

If you were taking 6 of the larger ones that would be ridiculously massive.

I:m sorry about the ankle swelling. I'm also a bit surprised that this is associated with the dose of pramipexole. Ankle swelling is not listed as a side effect of pramipexole.

I wonder if your doctor has considered if there is some other issue involved with the ankle swelling. Do you have any other health condition e.g..heart, liver, kidney or circulatory?

In any event, since 6 tablets is too high a dose anyway, no matter what size the tablets are, it is good that your doctor has advised reducing them. Not.that ankle swelling is the only thing, but also that on such a high dose you were at high risk of augmentation. You probably still are.

As you're probably now experiencing, reducing the pramipexole can lead to withdrawal effects, despite doing it slowly. In addition if you needed 6 tabs (0.75mg) to control your RLS, even without withdrawal effects your symptoms will be less controlled.

I suggest then, that you discuss with your doctor either adding another RLS medication or better still replacing the pramipexole totally with another alternative RLS medication, thus providing better control.of your symptoms plus, hopefully without causing ankle swelling.

I hope your doctor is aware that there are alternative medicines for RLS that are not a dopamine agonist. Using another dopamine agonist such as ropinirole or rotigotine would be pointless.

The alternatives are gabapentin or pregabalin. You could add one of these to your pramipexole to get better RLS relief and ideally could reduce the pramipexole gradually to nothing and if taking a sufficient dose of a gaba, wouldn't need the pramipexole.

At one time I was taking 0.75 pramipexole and suffered augmentation for years, not realising what it was My DR suggested switching to another dopamine agonist and it's only after being prescribed gabapentin for nerve pain, that I discovered it can be used for RLS. I now take gabapentin, no longer take pramipexole and rarely have RLS symptoms.

If the only cause of your ankle swelling is pramipexole, which I doubt, then the switch to a gaba may help with that too.

Unfortunately RLS and its treatment is not something that DRs know a lot about. I wouldn't be surprised if your DR knows nothing about augmentation due to taking a dopamine agonist, knows little about withdrawall and isn't aware of the alternatives.

Don't tell them I said so!

[Nightowl26]

Hi Spike, Ive been taking Pramioexole for eight years (suffered with RLS for 25 years) although just before Christmas I asked my G.P if I should try Gabapentin because I was concerned about augmentation. She prescribed the Gab's but they made me feel very drowsy throughout the following day. Didn't have a great Christmas!! I'm back on the Pram's because she didn't know what else to prescribe and hadn't heard of augmentation!

I've personally come to the conclusion that the biggest jerks I have ever experienced are doctors!!!!!

Sorry I'm not much help but hope you find the answers you're looking for.

[Hidden in reply to Nightowl26]

I don't know for how long you tried gabapentin but if no more than several weeks it may not have been long enough. Not only does it take a few weeks to start to be fully effective, it can cause drowsiness, dizziness and gait problems, i.e. stumbling.

These side effects however tend to wear off after a few weeks. When I first started taking it, some nights I had to crawl on all fours to bed. Now, although I don't actually leap up the stairs, I'm no spring chicken, I don't have that problem

Many GPs, it's true haven't heard of augmentation, but it's perhaps a bit unfair to judge them. For first line treatments, dopamine agonists OR gabapentinoids are the only alternatives recommended.

I hope you don't ever suffer augmentation but going back on prami after taking it 8 years means you have about a 60% chance of it. I've found the side effects of gabapentin no great disadvantage compared to the nightmare of augmentation, particularly the sleep deprivation.