No sleep!

[Sueloops]

So the inevitable has happened. It is 5.30am and I have not had one wink of sleep. My legs just don't want to be horizontal. I have kicked and shaken them, kneeled, tossed, turned and cried. I felt like taking my original dose in the knowledge that I'd most likely be asleep 2 hours later, but this is a long term harmful drug and I don't want to be taking Pramipexole for any longer than I can help. I took the minimum dose last night of .088mg and it's a week ago today that I asked my doctor if I could start reducing from . 350 mgs. Do you think I should now persevere on the low dose or take an extra pill (or two) tonight and hopefully sleep? Or just ring the doctor and tell him this is too quick, too soon?

[Woolfy1]

Hi Sueloops

I dont really know what you should do, others may have suggestions, but I just wanted to say how tough it must be for you. I know that feeling so well and it's so miserable. I'm now off ropinorole, taking gabapentin 900mg, and it's so much better. Still get rls at time s through the night but nothing like you're experiencing. However you do it from today. Good luck

[Sueloops in reply to Woolfy1]

Thank you so much. Its a good job I am retired, otherwise I would never get through the day.

[Hidden]

I'm afraid your doctor is ignorant. You have, as you now realise reduced the dose much too fast and what you're experiencing now is severe withdrawal effects.

I certainly wouldn't reduce your dose any further for at least a few weeks. You could try going back up to two tablets again, and then reduce. When you reduce, reduce by a half a tablet about every 3 weeks, not 3 days.

You could try asking your doctor for a sleeping aid temporarily.

You could try also asking for an opiate e,g, codeine to help with withdrawal effects. If refused then paracetamol and codeine may help.

I note also that you don't seem to have any plans for replacing the pramipexole with anything else. If that's the case, then once you've stopped the pramipexole you will be having symptoms as you were before starting the pramipexole.

It might be a good idea then to consider taking an alternative and starting this before you stop the prami.

Your dioctor should also carry out blood tests for iron deficiency, particularly ferritin and haemoglobin. If your ferritin is below 75ug/L then starting taking an oral iron supplement may help with your RLS.

[Sueloops in reply to Hidden]

Thank you for this! I have just spoken to another doctor in the practice and she wants me to take the equivalent of 2 tablets for a week at least and she is going to ring me again in 7 days time to see how I am. I asked if something else could be considered which is not a dopamine agonist and may be OK to replace the Pramipexole, so she'll talk to me about this next week. A little progress.

[Hidden in reply to Sueloops]

The standard alternatives are pregabalin or gabapentin. These can be started before reducing the pramipexole and should be. They take 3 - 4 weeks to start fully working.

They are not dopamine agonists so don't have the same complications

If your doctor should suggest switching to ropinirole or rotigotine, these are also dopamine agonists and should be avoided.

The recommended minimum length of time to wean off pramipexole is 3 months.

[Sueloops in reply to Hidden]

Thanks again. I definitely dont want any more dopamine agonists, and wish I'd been fully aware of what I was letting myself in for 18 months ago.

[Hidden in reply to Sueloops]

It was your doctors responsibility to make you aware if the risks of taking a dopamine agonist.

In this respect they have in fact acted unethically and have apparently contravened the law of informed consent.

healthunlocked.com/rlsuk/po...

[ACRELANE]

Hi Sueloops, I have been taking the highest dose of Pramipexol for a number of years and have developed augmentation with my suffering. It has definitely got worse and I have been advised by many of the others on this site to try and come off it. However, it is no good doing it quickly, one has advised over several months. If it was me I wouldn't ask to go any higher as that won't be enough at a later date. Maybe try something different. I haven't got that far yet but am working on coming off! Good luck there is light at the end of the tunnel.

[Sueloops in reply to ACRELANE]

Thanks Acrelane. A different doctor has now put me on 0.18mg of Pramipexole per night now and she's checking in with me in a week's time. I've asked if I can still come off it totally but replace with something less harmful so I am not in the situation of needing more and more when my body gets used to the dosage. The help I've received on this forum over the past couple of days has been invaluable and I hope it helps you too.

[ACRELANE in reply to Sueloops]

Keep being monitored and try not to increase the dosage. I am on the full amount and just started coming off by losing half a tablet and its a nightmare so far with no sleep for the ;last two nights!! I am trying to find alternatives for dopamine, so that when I eventually do come off pramipexol I can use something else.

[Sueloops in reply to ACRELANE]

I'll be interested to know what you end up taking instead. Good luck with lowering the Pramipexole.

[puzzler1 in reply to Sueloops]

Hi Sue,

I know exactly what you're going through as I'm withdrawing from Pramipexole at the moment. I wasn't on any other kind of RLS medication but as the symptoms got worse and worse, my consultant agreed to give me Temgesic, which is an opioid called buprenorphine and is a fairly new treatment of RLS. It's a controlled drug so doctors are usually opposed to prescribing it but I have to say it's completely changed my life! I've only been on it about 4 weeks but the effect is immediate and just about saved my life. It's not a new drug but it's use in treating RLS is new so your doctor or consultant would have to prescribe it off label (or off licence) and that's the problem. At the moment I only know of one other person on this forum in the UK who has it.

If you look up my name in the members areas you can read my 'posts' and 'replies' and find out more about it. I think was very lucky to go straight on to Temgesic and not have to go down the gabapentin, pregabalin, oxycodone route.

Please don't hesitate to contact me if you need to. Also have look at Shumbah's posts as she's the resident buprenorphine expert and been on it a year!

Hope you find some relief soon.

[RLSofManyYears]

Having just stopped taking Pramipexole a few days ago I can sympathise with you. First two nights were no sleep, third partial sleep, 4th bad 1st half and then I slept in until after lunch. Last night was better. Once my body starts to jerk then I know that there is no point in staying in bed. So I get up and find something to do for 30mins to an hour, and then go back to bed. (sometimes it works sometimes it doesn't). You will find it difficult to concentrate on things and so I tend to do things that are more manual/less brain e.g. watch TV, go for a walk even just round the room. I'm building a model aircraft for my granddaughter and most of the work has been carried out during the night.

Your new doctor sounds encouraging, but again Manerva and Jools both have good advice.

BTW, I'm also on Pregabalin, 200mg, rising to 300mg on Saturday. My doctor has also prescribed codeine for a few weeks to help with the withdrawal. In addition I have some close friends praying for me.