Pramipexole experience

[Ladyofthewolves]

Hi 👋🏼 I have had restless leg syndrome since I was about 5 and only recently have been put on pramipexole. Can anybody tell me what this medication is like and does it reduce the symptoms of cramp and kicking? It's only my second day taking it so would like to know other people's experiences on it as well.

[Madlegs1]

It's a good first line option- although many knowledgable doctors are avoiding straight dopamine agonists because of the dangers of augmentation.

The main thing is to start at the lowest dose.088. And titrate up slowly until you achieve relief. Whatever you do , do not go above .25 dose.

You could do worse than research rls medications on these two sites --- rlshelp.org and rls-uk.org -- someone hopefully will highlight them for me.

It is important that you take this opportunity to educate yourself about the medications available to you- depending on what country you're in.

Prami does work for many people- and at the low dose for rls does not usually have the bad side effects experienced by some on high doses.

All the best.

[involuntarydancer]

It doesn't work for everyone but it worked brilliantly for me until I started having to increase dosage more and more. Then I had to come off it (after 10 years of relief from a dose that increased 17 fold in that time). I had augmented and had a dreadful experience withdrawing from it. But if you make sure only to use it up to a dose of .25mg (if it doesn't work for you over that dose try something else) and keep an eye out for increased symptoms, it can be fantastic. It is associated with compulsive behaviour, gambling, internet use, internet shopping etc, though I think more at higher doses - I have a huge collection of shoes and handbags (which I was never interested in previously) amassed in my later years when on a higher dose. As soon as I stopped the drug I lost interest in buying them and now I am trying to find reasons to use them!

One point: I found I had to take it more than an hour before I went to bed - if I took it within an hour of bedtime, it was totally ineffective and I had symptoms all night unless I got up for an hour.

[Pippins2 in reply to involuntarydancer]

Involuntarydancer OMG your dose was increased 17 fold! What dose was you actually on at its highest? Out of interest was that a GP or a Neurologist who prescribed those doses?

X

[involuntarydancer in reply to Pippins2]

No, it wasn't unbelievably high - I started taking a .088 pill daily (unbelievably, that low dose worked for quite a while - maybe nearly a year). My sleep consultant told me to up the dose as I needed to and then discharged me back to my GP. The GP just kept giving me scripts for higher and higher doses over the ensuing 10 years. I did ask on a number of occasions whether the dose was too high but they said it was fine - I asked my chemist also. I now think they must have been consulting the Parkinsons dosage because everyone said it was fine. I was lulled into a false sense of security by these assurances and didn't do any research myself which was unfortunate. If I'm honest, I didn't really want to know as the mirapexin worked very well for me ... until it didn't. And I was aware that the options after mirapexin were more limited.

I was on it for nearly 10 years and was on over 1.5mg when my GP finally referred me back to the original consultant. 1.5 is obviously much too high, and it is over 17 times the original dose, but have heard of people on much more.

[Pippins2 in reply to involuntarydancer]

Thankyou for your response. I started on 0.088 and was good on it for 2 years gradually increasing up to 5 0.088 pills a day. Then augmentation, horrendous withdrawal. I kept off the Dopamine Agonists for almost a year but unfortunately I couldn't tolerate the high doses of opiates needed to keep my RLS under control so after getting advice from Dr B I went onto Neupro patch. Was very hesitant but I knew it had the lowest rate of augmentation. Been on it about 5 years, take regular breaks ,stay on lowest dose of 1mg. In conjunction I take a tiny bit of Morphine and Pregablin for back pain. It is the patch which works like magic for me

Pippins2 x

[involuntarydancer in reply to Pippins2]

Hi Pippin, It sounds like we had a similar journey but I am certainly enjoying less severe symptoms than you currently.

I just read your new post about what rls feels like so have an idea of just how bad yours is. My rls was similar to yours for a few months after coming off pramipexole but gradually settled down, I think due to increased iron levels. I had no effective meds after pramipexole for a while - my sleep consultant would only prescribe neupro and I was adamant at that stage that I would not return to d/as.

Eventually my gp gave me oxycontin. It took 30mgs to effectively quieten my legs initially and at this dose I found I was so alert at night that I wasn't getting any sleep even though I had no symptoms (it's infinitely better to be awake at night with no symptoms but it still prevents anything like a normal life).

Eventually I too started taking neupro. Initially it took 2mg but after a while I was able to drop to 1mg and I gradually reduced the Oxycontin. In meantime I reintroduced Lyrica to try and overcome the alerting of the Oxycontin. I ended up on 1mg neupro, 10 - 15 mg Oxycontin and about 100mg Lyrica. I found that using small amounts of more drugs was much more effective. BUT I was troubled with a druggy type feeling all day which I suspect was the Lyrica. Can't really take Oxycontin without Lyrica as no sleep and not prepared to take neupro on its own for fear of the dread augmentation. It is a constant dilemma how to proceed. I came off neupro and even after the short time I had been on it, symptoms coming off were worse than my baseline no medication symptoms are.

I now take Kratom. For me 4mg of that is enough to quiet the legs for at least half the night. I have eliminated Lyrica and feel much more alert in the day. I continue to take 5 mg Oxycontin not so much for the rls (the dose is too low) but rather because eliminating that last pill causes awful restlessness and I'm not ready to go through that yet. I also use a Relaxis pad which can help with mild symptoms.

I am currently holding neupro in reserve as I seem to be managing without it and am glad to think there is a drug that works in case I have more need of it in due course.

I still have terrible problems with being alert at night and am starting to use cannabis cooked into cookies. Got a great night's sleep last night. I hope you are managing something like a normal life and coping with the neupro holiday period at least to some extent. I would love to know how long you take off neupro before resuming.

[Hidden in reply to involuntarydancer]

Oh my goodness that dose was unbelievably high.! I guess you could try ebay to get rid of all the collection of shoes and handbags,

[Ladyofthewolves in reply to involuntarydancer]

Okay thanks 🙏🏻 the doctor told me to take it 2 hours or more before bed so hopefully it works how long have you had rls for?

[involuntarydancer in reply to Ladyofthewolves]

I got rls during each of my pregnancies. It went away after the birth of the child in each of the first three cases but unfortunately it did not go away after the last one so I have had it solidly for 14 years now.

Pippin, the person who prescribed the mirapexin initially describes herself as a 'sleep consultant' but I think she specialises more in sleep apnea and the like. She did tell me that I was her worst case of rls and she has seemed at best at sea in dealing with me and at worst horribly disinterested and uncaring. She is not wholly responsible for the increased dose however except in the sense that she should have told me to go back to her once I got above a certain amount. I suppose the GP should also have picked it up but they too are completely at sea dealing with rls. I did try to get an appointment with a neurologist in Dublin, in fact I tried two neurologists but they both declined to accept me because they said they did not know enough about rls.

[nightdancer]

First of all, my experience was being violently ill on Mirapex, so it was out for me, Any of the dopamine meds are the same way for me. Also a great web site to look up meds for any reason is rxlist.com It has the most comprehensive interaction info, and so on. For some people it helps a lot, others it does nothing. It is a Parkinson's med, but for RLS the doses are MUCH lower. And, it must be kept at the lowest dose possible. You asked what it is like, which is really general. I can say there are warnings on it- be careful if you find you are developing compulsive behavior. This is one of the strongest warnings on it by the FDA in the US. Also, daytime drowsiness, etc. Not all people get all the side effects, so it is different for a lot of people, and everyone really has their own experience. NO alcohol with this or any other RLS med. it will knock you loopy, and also alcohol blocks the dopamine recptors in your brain, and that would work directly opposite of what your Mirapex is supposed to be doing. And you asked it will stop the "cramping and kicking". If it is the med for you, it will help with the RLS, and also PLMD is you are kicking in your sleep, but if you are referring to actual leg cramps, the answer is no on that. RLS is not leg cramps. It is neurological, RLS is, and leg cramps are muscular.

[Ladyofthewolves in reply to nightdancer]

Thanks for the info I think mine is more periodic limb movement but either way I've had it since 5 so I'm looking forward to progressing to fewer symptoms

[buddy79926 in reply to nightdancer]

It is really important to take the side effects list seriously. I had been on it for about 5 years with no real problems. then on a trip in our motorhome one minute I was driving down on the right side of the highway and the next minute the unit was on it's side in a ditch on the opposite side of the road. We could never figure out what happened.. my wife and i were talking just before it happened.. I think I found the answer to it just a little while ago. Going through some side effects of the drug, I found that one was "falling asleep without warning". I was on .5 mg twice a day at the time.. It could have been the reason. I am now off the drug..

[involuntarydancer in reply to buddy79926]

Yes; forgot to mention that problem. As my dose increased I found I could have episodes where I fell asleep very suddenly. Never actually at the wheel of the car but many times had to pull in to side of road and would fall asleep then and there for maybe 20/30 mins.

[buddy79926 in reply to involuntarydancer]

It wouldn't be so bad if there was some warning that you are getting sleepy. then pulling over is an option but one minute I was alert and talking, next minute gone to sleep,, so scary..Now my wife is on the edge of her seat if I just brush the shoulder warning strip.. please be aware of it.

[Tease-ah]

Hello, I am on Pramipexole for a few years now. Started at lowest dose (0.88) but didn't do much for me so went to 3 tablets, good for a year then had to take 4 tablets, the year after 5 tablets (because of augmentation). Now I am on 5 x 0.88 pramipexole + 100mg Tramadol and been okay with this for last 2 years. Some advice i would give when on Pramipexole: Take indeed 2 hours before bedtime , do NOT eat a heavy meal before taking them, if i do this meds don't seem to work and i garanty have RLS! I usually eat half hour after taking the meds. Also try to avoid any alcohol, caffeine or too much sugar. Side effects of Pramipexole for me are blocked sinuses and sleepiness, well worth it over the RLS.

[Marita-66_Ben]

I have had Restless Leg Syndrome since I was in my 20s and I'm 61 now. It has been very severe. I've been on Pramipexole for a couple of years and I am definitely better although I do have some bad phases. It will probably start on a low dose and build up. I take 1 Pregabolin at night which also helps. I know that if ever I forget to take my Pramipexole, I'm in big trouble. Good luck with it.

[funnyfennel]

I agree that a small dose can work wonders, for a while...If you have x2 pills, I find it best to take them separately , and if more are needed in the future, most of us take a painkiller as well, rather than increase the dose....On a low dose and being aware of the "shopping etc" urges, you may be ok and the rest (if you get it) may allow you to be busier and more relaxed ...???

[jk3842]

I have written several post about Prampixole.

1 I am currently on Prampixole but I am in the process of cutting back my dosage amount for several reasons.

1-In my opinion it is a dangerous drug for any number of reasons.

A- Even if you take no more than the recommended daily dosage of .625 MG it can cause your Sodium levels to decrease. In my case my Sodium count was so low, I had to check in the Hospital for two days to get my sodium levels back to normal. No one of my docts at the hospital could understand why my Sodium levels were below normal. Granted this is a rare incendent but it happened to me.There was a similar case written about a patient in South Korea which I found through a internet search.

B-After a while depending on you body you will get Augmentation and your RLS will become much worse and then you will have to get off the drug.

C-Weaning your dosage amount can be excruciating. I found the weaning process to be more difficult than weaning off of an oped like Hydrocone.

D-Currently I am still taking Prampixole even after the low sodium hospital event but my dosage is down some 60%. This is because it is so very hard to wean your self off the drug

E- Weaning off of Prampixole can cause severe unending depression.

F-While weaning off of Prampixole you can get severe RLS, sleeplessness and even flu like symptoms.

The drug is diabolical so you have to decide which is worse RLS or Prampixole or opt for another drug.They all have their downside.

In any case because of RLS you / we are lodged between the devil, other drugs and suffering with RLS.

Research the topic, educate yourself because you and your friend RLS are going to be close friends the rest of your life.

Wish it was different but it is what it is!

[jonjo]

I am on pramipexole for rls. I was on clonazepam and they were fantastic but eventually after a few years I became used to them and then they didn't work. My doctor tried with some ropinerolebut they were no good for me. A friend told me she was on pramipexole so I asked the doc for them. I am on the lowest dose and if I take them 1hr before bed (1 tablet) I have to take half a cocodomol with them . I am sure I could increase the dosage if I asked but this seems to work ok for me. Unfortunately I have started having symptons of rls around 7-9pm which can be embarrasing if I am out or have company but I have started to take half a cocodamol when this happens and it usually settle it down. It is much worse when I am tired and you need to go to bed 1hr after you have taken the pramipexole. If you leave it too late or forget the tablet you are in for a horrible night. I keep looking at what I eat and at my other tablets but can't find anything to cause rls. My doc says it's a shortage of dophamine in the brain.

[Henshaw241241]

Hi I have been talking pramipexole for a long time 3 times aday 0.18 mg the best nights sleep for years I might get a few jerks but nothing like they was Henshaw 241241