Should I stay on pramiprexole?

[Omegadcuj]

Some of you may be aware of the sleepless nights and awful time I've had with pramiprexole, as m as many of us have. This mostly seems to have been due to the way I was told to take it by my doctors 3x0.088 taken 3 times a day (spread out).

Since out of desperation I have reduced the dosage to 1 tablet at 6pm and one at 9pm I have been getting much better sleep.

My neurologist is due to call today (er maybe lol) but should I still fight to get off pramiprexole and onto Gabapentin given the known issues with prami?

[LotteM]

First, well done that huge reduction 👏🏻. I understand you now sleep far better. But how are your RLS symptoms with that reduced dose?

I ask, because you now take a fairly normal dose. If you get good coverage of your symptoms and no signs whatsoever of augmentation, that you may want to stay put. Pramipexole has helped and is helping many others often for many years. It 'only' carries the risk of augmentation. If augmentation, it may damage your dopamine receptors permanently, but currently that is only an unsubstantiated possibility as nothing is known really about it. The main thing - if your current dose works well enough - is NEVER to increase this dose again. If anything, reduce further to find the lowest acceptable dose. Of you need to increase to quell RLS symptoms, it would be better to add an alpha2delta ligand (gabapentin or pregabalin) or an opioid. As soon as you get signs of augmentation, reduce to get off the pramipexole.

[Omegadcuj in reply to LotteM]

Good advice I think. Especially given my neurologist appt has been abandoned from the looks of it :/ covid sigh. But yeah my symptoms without are bad, with they are pretty much zero at night and twinges to annoying through the day. I think given the NHS situation I will stick for now but won't increase my dose. Previously that resulted in weeks of no sleep! Thanks for the response and stay safe

[LotteM in reply to Omegadcuj]

I am happy to hear that your symptoms seem manageable from what you write. I assume you get sufficient sleep so that you can recover from your previous 'bad' period. Given covid-19, we'd better be as robust as possible these days. If not, you may want to ask for a phone consultation. And when needed, you will get ample advice here on options on how to proceed when your dose of pramipexole becomes inadequate again.

[Hidden]

Hello! I'm so sorry to hear of your troubles with Pramipexole, but glad to hear that it's better now! Congratulations for doing what you needed to save your sanity! Sometimes we need to make those decisions by ourselves, don't we? I've done that before, as I'm sure others have as well. RLS is a devilish syndrome that can very quickly cause it's patients to dip into insanity.

Yours is a difficult question to answer since every person is different. I tend to agree with LotteM in that it might be worth keeping the same regime as long as things are working.

If it is the potential for augmentation you're worried about, I would try not to worry. Who knows? You might never suffer from it. Again, everyone is different. One of the things I've learned on my RLS journey is that I can't worry about what might not even happen. Doing that just incites fear and keeps us from, in this case, trying things that might help. Will your Pramipexole eventually stop working? I have no idea (and no one else does either). Will there be those who advise you to get off ASAP and will there be others who tell you to get off ASAP as well as advise you to not even think about starting Gabapentin either? Maybe so, but that is them recounting their own experience with the drug.

I augmented after about 4 years of being on Pramipexole. Although I went through this, will I tell you to stop taking it? No.

Whatever works and gives you your life back is worth continuing. RLS shouldn't even be a syndrome it's so evil, so if we find a drug that is giving us any semblance of life we shoukd hang onto it.

Take care,

Jessica

[Omegadcuj in reply to Hidden]

Well said thanks.

[Hidden in reply to Omegadcuj]

Any time😃

Take care of yourself.

[Hidden]

Well done on reducing the pramipexole and I can see you appear to have benefited greatly.

If you're now satisfied at the level of relief you're getting then I agree with both Lotte and SWJW12

[Omegadcuj in reply to Hidden]

Don't have much choice now lol goodness knows for long it will be before I can see a neurologist! Thank god I sorted it out. Can't even imagine 6 months of that hell :(. Thanks again manerva, you are a huge and knowledgeable help to all

[NellieK]

Not sure why the doc wants you to take prami 3x/day. I just started prami a couple months ago. I was told to take 1-2 tablets (.25 mg each) 2 hrs before bedtime. Sometimes I take 2 tablets around 9pm. Other times I take one around 8-9pm and another one a couple of hours later since I usually don’t go to sleep before midnight or later. I noticed when I take them separately, there is less of a chance of my having RLS at about 5am. I am currently trying to switch from Kratom to prami for RLS, so I am also taking a small dose of Kratom at night (1/2 tsp). When I was first reducing my Kratom dosage before starting prami I would have horrible RLS in the early morning, around 3-5am. But with prami, that has mostly gone away, so I believe it is working for me. Each of these meds works differently for each person, so do whatever works best for you.

[Omegadcuj in reply to NellieK]

Exactly the same here. I was horrendous from about 4am onward. I realised that staggering then 6pm and 930pm gives me a solid if groggy sleep. I'm still waking up and tossing and turning a lot but it's 100% better than it was! My clue was something manerva posted about all the chemicals in the brain being delicately balanced. I asked my Dr and he said take them for you like (very helpful!). But it's working for now

[Netball-50]

Hi I've been weaning off pramipexole from 0.088mg x4 tablets I am now on a 1/4 of a tablet. I am also taking 900mg gabapentin at night. I was determined to get off the last bit of pramipexole as I had 4 days off work. Unfortunately it hasn't worked out as well as I hoped I've had 3 nights of hell twitching kicking legs all night!! I gave in and took my quarter of a tablet last night and slept like a log. I think like one of the comme ts I've read I will stay on the 1/4 of a tablet so I can get some sleep as I work full time. Good luck and stay safe xx