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.

[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!

[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.