Weaning off Pramipexole

[Iloverls]

I’ve finally started to wean off my DA after reading and seeking advice here. Thank you!

This is an update:

I started taking 300mg gabapentin 3 weeks ago and dropped from .625 to .5 pramipexole.

Then dropped again by 1/2of .125 ( .0625) over last 3 days to .4375.

Taking all at 645pm

RLS symptoms appear to be the same as they have been over last year or so.

Ie. most nights for about 30mins to an hour where I have to stand up generally at night just after taking meds and then sometimes again when I go to bed at around 9 for an hour or so.

Things can get much worse if I get out of routine and go out or have people to dinner.

RLS can last for 3 hours or more. So I will be Walking or standing intermittently for that time

Different symptoms since starting on the gabapentin and dropping the pramipexole:

1. Waking in the morning but groggy to point of not really wanting to get up.

Will subside slowly throughout morning and only slightly groggy rest of day.

2. Brain fog

Forget things

Double appointments

Can’t think clearly to organise an itinerary or plan menus for the week. Slower to catch on in conversation

3. Irritability. Partner says significantly!

4. More likely to be upset about things. Eg actually crying about a scenario on TV or about a story from the La fires ( which I never do previously)

5. Slightly more despondent about everything

So I’m wondering:

At what point do I know I can or can’t tolerate this gabapentin. Will I only know once I’m off pramipexole?

Could the new symptoms be from DAWS?

My neurologist, who I saw today, thinks it’s from the gabapentin and has advised to wait till that settles before increasing the gaba to 400mg. per day.

She also said to continue to decrease the pramipexole by .0625 every 3 weeks.?

She says I won’t have any DAWs and I wonder if that’s so I won’t get what I don’t believe I’ll get ( e.g. she’s trying the power of suggestion)

She did say that if I get increased RLS that I might need an opiate.

My next appointment is in 3 months so feel a bit like it’s going to be a very slow test and trial phase.

Any advice welcome.

[SueJohnson]

Who are you seeing? I thought you were seeing Dr Stephen Gibson.

That's great that so far your reduction has been easy!

The symptoms could be from DAWs or from gabapentin. I would come off the gabapentin for now by reducing by 100 to 200 mg every 2 weeks. That way when you are off it you will know if the symptoms are from gabapentin or DAWS. In any case you normally wouldn't start gabapentin until 3 weeks from when you are off pramipexole.

[Iloverls in reply to SueJohnson]

I saw two different specialists.

1. Brendon Yee who you know of and who is actually a respiratory specialist who became interested in RlS after seeing it in his sleep studies and became Australia’s foremost expert. I saw him first about 30 years ago so thought I should try him again as he’s still one of the only experts in Aust. When I saw him He recommended pregablin and seeing Dr Stephen Gibson who is a pain specialist ( and understands RLS) because Dr Yee said he wasn’t an expert in opiates and wouldn’t be comfortable prescribing. They are both a plane flight away in opposite sides of Sydney so pretty inconvenient to be seeing them.

2. Lyndal Van Leer who is a neurologist and only 50 mins drive away in Gold Coast. She’s been getting up to speed with RLS but as you can see she doesn’t yet fully understand the intricacies. I suspect I’m one of her first RLS patients with refractory RLS.

I very much appreciate your exert advice Sue as always.

[YoghurtLover2 in reply to SueJohnson]

Sue… I’m confused…. Please help!

My pharmacist said I can start Gabapentin while coming off Pramipexole. I’m on about 0.180 mg Pramipexole…. 3/4 of .250 pill.

Thanks 🙏

[SueJohnson in reply to YoghurtLover2]

Start gabapentin 3 weeks before you are completely off the pramipexole as it takes 3 weeks before it is fully effective. There is no point starting it before then because it won't help until you are off pramipexole and your withdrawal symptoms have settled and then you can start increasing it.

Pharmacists know a lot but they are not experts on RLS nor for that matter are most doctors.

[YoghurtLover2 in reply to SueJohnson]

Thanks Sue. I’m starting the “journey “ 😳tomorrow and should be off Pramipexole 🙏in 3 weeks … hopefully I’m not planning on doing it too fast 🤷‍♂️

[Joolsg]

rls-uk.org/useful-resources

Scroll down the above link to 'withdrawal schedule'.

The advice is to reduce Pramipexole by half a 0.125 pill every 2 weeks. If you're younger and otherwise fit and healthy- you may be able to tolerate a faster withdrawal.

You've added gabapentin very early on. It doesn't stop withdrawal symptoms so usually no point starting it until 4 weeks before last dose of Pramipexole.

Gabapentin causes dizziness/unsteadiness/brain fog.

Withdrawal from Pramipexole usually causes increased severity in RLS Symptoms and depression/anxiety/ irritability.

So your symptoms are actually common in Pramipexole withdrawal.

I find it hard to believe that doctors dismiss depression and irritability as a withdrawal symptom. Pramipexole floods you with dopamine - the feel good/ pleasure hormone. Your brain gets used to that. Then you take it away. So of course your brain experiences loss of pleasure. It can take months - up to a year, for your brain to adjust and adapt to the loss of extra dopamine.

So your symptoms are a combination of side effects from gabapentin and withdrawal from Pramipexole.

The gabapentin side effects settle after 2 or 3 months.

I would not increase above 900mg until 3 weeks after your last dose of Pramipexole.

And if withdrawal becomes too difficult- ask for the low dose opioids. They do help.

[Iloverls in reply to Joolsg]

Thank you Joolsg.

See reply to Sue regarding my neurologist and her understanding of RLS and the DA withdrawal process.

I will take the withdrawal schedule next time I see her. I have shown her parts of it in previous appointments but I always have a lot of information to get across so it’s hard to know how to prioritise. Mind you, now I’m at the pointy end and actually coming off pramipexole I’m sure to have a clearer focus. Eg. When DAWS starts to become the main issue.

I’m 70 and exercise regularly but slightly overweight Probably should stick with slow DA withdrawal. And I’m pretty sure she’ll give me low dose opioids when (if? I add optimistically 🙏)the time comes.

[Joolsg in reply to Iloverls]

There are studies that show gabapentin doesn't work for many patients who have previously taken Dopamine agonists. The theory is that DAs damage Dopamine receptors. So when you increase the gabapentin - if it doesn't cover your RLS within 3/4 months- you can then ask to switch to low dose, long half lifeopioids like Buprenorphine or methadone.

[Iloverls in reply to Joolsg]

Okay. Thank you🙏

[GoForward]

All of your symptoms totally resonate with me, Iloverls. I am 69 and started weaning off Pramipexole 3 months ago or so. I started taking it 20 years ago. I was up to 1.75 mg a day. I am now down to .25 mg. It’s been a very rough go and I experience the same symptoms as you. I was on Pregabalin (50 then 100 mg) when I first started reducing the Prami. That worked well for me for the first couple of weeks. I was drowsy and dizzy but did not experience an increase in my RLS symptoms. However, with my next reduction, that all changed. My RLS became unbearable. After several weeks of suffering, i finally was able to get a prescription for Suboxone. It’s been a lifesaver. I stopped the Pregabalin and am now taking .5 mg every night of a sublingual Suboxone film. I still have many of the same daytime emotional symptoms, and my RLS can also flare, but at least I am now able to sleep the night. It’s such a relief. You certainly have my sympathies for what you’re going through! But hang in there. There are so many people who have walked this path before us and tell us there is a new life on the other side. Cheers!

[Iloverls in reply to GoForward]

Thank you for the encouragement! Much appreciated. Pleased you’re almost on the other side!

[Iloverls in reply to GoForward]

My RLS have now become unbearable too GoFoward. Awake ALL night two nights ago. Excruciating!

In the last few nights while not changing my meds at all much worse symptoms and extended time. Suspect the DA withdrawal and increased RLs symptoms might be just delayed symptoms as my diet hasn’t changed and no triggers. Except, now I think about it, I was very late taking meds one night as I was out and that’s always bad news.

I spoke to my neurologist who wants me to take some Oxycodone ( Endone). I asked for Buprenorphine but she said it was too strong for a ‘ novice’ opioid taker.

She seemed to think 2 mg was the lowest dose.

I’m speaking to her again in the next couple of days and hope to have a clearer set of points regarding Buprenorphine.

I think I can advise the film that can be cut into strips is available in Australia.

And should I start on .2 mg and add .1 mg with every .0625 mg. drop of Pramipexole? Currently on .4375 (1 3/4 tabs @ .25)

Is there a simple set of words that I can give her to explain why I prefer Buprenorphine?

Thanks in advance.

[GoForward in reply to Iloverls]

Hi Iloverls. Happy to help. But, I only know Suboxone because of this forum and my own recent experience with it. I am certain that SueJohnson or Jools are the best ones to guide you for when you next speak to your doctor.

I take Suboxone which is Buprenorphine plus Naloxone. Don’t quote me on this but the Naloxone is present in order to prevent the user from experiencing the high from the opioid and thus make it less addictive. Some RLS sufferers have felt that the added Naloxone actually lessened the relief effects of the Buprenorphine. That has not been my experience to date, however.

I am in Canada and the lowest available dose of Suboxone is 2mg just as your doctor has said. However, I was able to get my doctor to prescribe the Suboxone sublingual film. I literally cut the film and only take the amount I need to control my symptoms. Note: the manufacturer advises against cutting the film but it is common practice among us RLS people. I initially cut the 2mg film into 8 pieces but found that it wasn’t enough for me. I now cut one 2mg film into 4 pieces so I am taking .5mg per night. That works for me to get me through the night. I sleep and do not feel too drowsy the next morning. I do get break through spasms during the day but I have not completely weaned of the Prami yet. I also still get periods of nausea but they are beginning to be less frequent. Unfortunately, I still experience periods of depression. Once again though, I am hoping these will lessen/disappear after I am completely finished the Prami and get through that first month afterwards.

For all of us, the opioid we take and the amount we need is very personal and experimental. The Suboxone film allows us to take the smallest amount we need and is easier to manage than trying to cut an opioid in pill form. My understanding is that Buprenorphine per se has been quite successful for RLS sufferers. It also has a longer half life than others in its class meaning it’s effective over a longer period of hours. Perhaps you could check out some of Dr. Berkowski’s videos to show your doctor?

Again, Sue or Jools can best guide you. Let us know how you make out. Wishing you success!

[Iloverls in reply to GoForward]

Oh, that’s so lovely of you to reply in so much detail. All of that is appreciated and helpful.

I did post yo the main body here too thinking Sue et al might see it !

You seem to be resolving issues slowly but surely.

Go well !!

[MazeyJane]

I also had to wean off the pramipexole and started taking 525 mg. of pregabaln. It was hell but I got through it. I've also had to have iron infusions.

Have you had your iron level checked?

[Iloverls in reply to MazeyJane]

Thanks for checking! I’m Working on iron issues. To complicate matters I carry the gene for haemochromotosis. While I don’t have the condition some carriers can over-store iron regardless. so need to know if my variety is prone to over-storage of iron before I go down the supplement or infusion track.

[Bloodhound669]

This is all baffling to me. I was on Pramipexole until I started having restless legs because of augmentation(?). It was suggested that I get off of Pramipexole and start onto Gabapentin which made me sleepwalk. Now they suggest Pregabalin. After reading many different people talking about getting off of Gabapentin and switching to Pregabalin I began to wonder why, if Pregalin is the better drug, do they recommend gabapentin at all? Seems to be a hodgepodge of experimental gobbledygook. Now, when I get back to my regimine, (I'm not really on anything other than a small dose, 100mg. of Gabapentin because of my sprained ankles and, I think my daily intake of Ibuprofen may be masking my rl), I may have to switch to Pregalin, if my doctor will comply. NOW they throw another drug into the mix (Suboxone). Will the list of new drugs never end?

[SueJohnson in reply to Bloodhound669]

Opioids like suboxone are usually the last things prescribed when other things don't work and many doctors won't prescribe them because of the opioid crisis.

Neither gabapentin nor pregabalin is the better drug.

[Iloverls]

Apologies fir repeat but just realised I posted as a reply tonGoFowardvand it might not get to Sue and other experts

My RLS have now become unbearable too GoFoward. Awake ALL night two nights ago. Excruciating!

In the last few nights while not changing my meds at all much worse symptoms and extended time. Suspect the DA withdrawal and increased RLs symptoms might be just delayed symptoms as my diet hasn’t changed and no triggers. Except, now I think about it, I was very late taking meds one night as I was out and that’s always bad news.

I spoke to my neurologist who wants me to take some Oxycodone ( Endone). I asked for Buprenorphine but she said it was too strong for a ‘ novice’ opioid taker.

She seemed to think 2 mg was the lowest dose.

I’m speaking to her again in the next couple of days and hope to have a clearer set of points regarding Buprenorphine.

I think I can advise the film that can be cut into strips is available in Australia.

And should I start on .2 mg and add .1 mg with every .0625 mg. drop of Pramipexole? Currently on .4375 (1 3/4 tabs @ .25)

Is there a simple set of words that I can give her to explain why I prefer Buprenorphine?

Thanks in advance.