pramipexole

Hi good people still taking each day as they come and still OK the one thing i do know is how much better i feel after coming off pramipexole med, feel better all round and if anyone is thinking of coming off pramipexole it is hard work but believe me well worth it. My life as changed in a short space of time slow steps but big steps fingers crossed it continues. I would say 75-80% better off pramipexole than when on this med enjoy the good weather we have at moment in the uk folks talk soon NICK

31 Replies

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  • Lovely to hear from you Nick. Long may your good health continue.

  • Hi Nick,

    Brilliant to hear from you on this bright sunny morning. :) You are our star forum member for weaning off pramipexole. You asked for help and support on here and you received it. It was a roller coaster and you made it. Team work. Yep, slow, sure steps Nick.

    Great to hear from you. :)

  • Good to hear things on the up & up. Long may it last and fair play for your effort - keep her lit as they say :)

    PS we could do with some of that lovely UK weather over ion Ireland I am looking out at rain :(

  • Hi Nick, such a upbeat post from you, you even sound great. Good to hear you are still progressing to having a better , happier life now. As Kaarina has said you are our star forum member, you were in such a dark place when you told us your story and we all worried for you. You reached out for help and support and you got it in abundance from the members. Drop in now and then to let us know how you are. From sunny Sussex by the sea. :) x

  • Ive got good people like yourself to thank for your words of encouragement that got me out the dark tunnel i was in and at times thought i was in there for good forever grateful to many of you x

  • Great to hear things are so much better with you. I totally relate to what you say about pramipexole. I felt so much better in non-specific ways (as well as eliminating the probs of augmentation) after I stopped it. Like I was really 'me' again.

    Well done for getting off that stuff. Keep in touch.

  • Good to hear, I also have got off pramipexole recently. I think it needs to get around the community that pramipexole is for short term use only.

    Barry

  • So brilliant to hear you sounding so positive Nick. Really chuffed that things are looking brighter for you.

    Jools

  • Sooo pleased to read your post Nick .Well done ! X

  • Hi ive been on pramipexole and suffer from weight gain and swollen finger joints...im now waiting to see a neurologist as I tried to come off pramipexole and my Rls went crazy...any comments on pramipexole please?

  • unlike others above, I am very happy with my one Pramipexole per day two hours before bedtime. I get a good nights sleep nearly every night unless I forget to take the pill, I do get RLS if I try to rest or sleep in the daytime. Also took an attack while watching the Channel 5 documentary and again next day when reading extensively on this site. Wondering if there is a psychological aspect to the condition i.e. that the more you think about it the worse it gets?

  • Hi Granny,

    Good to hear that you can mainly keep your RLS under control with the one Prami daily. This is a good example of what helps one sufferer does not help another one iota. That is what makes it so complicated.

  • Hi for around a month when coming off pramipexole thought i was going mad and thought of ending it all as most people on here know it was hard bloody hard and something i hope i don,t have to do again but with the help of my family and the great people here who were available to help 24/7 i got through and believe me the best thing i could have done. My doctor has got me on pregabalin 100mg twice daily and codiene phosphate and is working well, the biggest piece of advice i can give you is the fellow sufferers on here know what there on about and will help you as they did me if your thinking of coming off pramipexole i owe these people BIG TIME and wish one day i could meet each and everyone and thank them personally.Someone mentioned the other day that pramipexole should only be used shot term and i would agree with that Hope this is some good to you it will be hard but you will make it and your never alone on here

  • Hi is pramipexole dangerous im worried?

  • I am.just now starting to try and get off it. Not doing well. Haven't been able to do it even for 2 nights. My legs are going crazy.

  • Stay strong please. It gets worse before you feel better. I was in hell for a week then I felt like a new woman.

    Hang in there, you can do it 😊

  • would,nt be prescribed by GPs if dangerous but is hard to get off once on it its just trying to find what works for people to control rls what works for one dose,nt work for another personally coming off is the best thing i,ve done but it might be good for you

  • Hi.

    I have just came off pramipexole and found so hard last night. I am determined not to give in but wondering If you are you taking anything else for it?

    Thank you.

  • codiene phosphate i now take 100mg of pregabalin and two codeine at night and after being worried about new meds i,m doing great the first three weeks coming off pramipexole was the worst three weeks i have ever been put through but got there in the end hang on in there you will beat it

  • Hi.

    I was on a 0.88mg for about 3 weeks. Then last night, i just stopped and had a teeerie night. Fell asleep around 4am! Luckily not working due to school holidays so I can cope with the sleepless night. I have just started taking feroglobin and magnesium tablets. Using decaff stuff so hoping that makes a difference! I was nearly giving up lady night but I thought I lasted that long can't give in :)

    Don't look forward to bed time but I will try to beat this devil! :))

    Thanks

  • if you want the truth i did think about ending it all i was real bad doing things that worried my poor family but there is great people on here that i owe big time they seen me through the dark tunnel i was in i took tramadol whilst coming off which helped ask your doctor to try you on pregabalin its worked along with codiene for me but all meds work differently for people i know its hard but i am proof that you can beat pramipexole which i hope i never have to take again you will beat it honest please ask for advice there,s fellow suffers on here that gave me better advice than my doctor

  • if you can read my old posts and you can see what help i received and who and what i received from them this site will see you come through it

  • Hi bkc,

    If you click on one of nick-the-turk's postings on this thread it will take you to Nicks postings and you should be able to read about his journey to beat prami. Nick got brilliant support from certain lovely members of the forum especially and although he was in a dark place at times he kept going and triumphed. We are all so happy for him. He is our forum star. :)

  • Thank you. I read so much recently and it helped me all. Thank you.

  • told you the forum members on here would see you through whilst they are all suffering they take time out to help others they are all STARS

  • Hey Nick, how's your ferritin levels? Ever think about giving the ferrous bisglycinate a shot? Now you should read Bkc and Mark's stories. Both had good luck with the bisglycinate. NoMo on the other hand I can tell is going to be a thorn in my side but he was not on a DA like you and Bkc and Mark. He is recovering from a bout with the Epstein Barr Virus. Those pesky microbes. Can't live with them...cant live without them actually. Be well always!

  • Not read much about bisglycinate but to be honest i,m in such a good place at the moment don,t want to rock the boat so to speak lol but thats my task today is to read up on the subject thanks

  • Totally agree. The reading is for recreational purposes only. As I said in a previous post, we're into a very interesting chapter in RLS history. It is spiritually uplifting...I think...to know that RLS is not the great and powerful OZ, but possibly just a bunch of iron deprived dopamine receptors.

  • Hi Nick, good to hear you are now in such a good place and that you can now come on here and tell people who are trying to come off their dopamine med your story and you are now giving back help and support to some one else. x

  • I am new here and I started taking a very low dose of Pramipexole for RLS a few months ago. I was weary about starting it but my doctor assured me it was a good drug for my situation. My RLS has gotten worse and I want to get of this drug. I just tried to go without it but my legs were just crazy. I don't know how I am going to get off it. Any suggestions?

    Thanks

  • I am sorry to hear that you have had such a bad time with pramipexole. In fairness to the drug, although there are all sorts of very good reason why many on this forum hate it (myself included), it usually does have a positive impact on RLS at least initially and to that extent your doctor was not wrong.

    Unfortunately, it is to be expected that your RLS will temporarily disimprove when you try to discontinue it. I would have thought the fact that you have only been on it for a comparatively short time and on a low dose would mean that you might not have such a hard time as some but it sounds like it you are having a pretty bad time. Hopefully it won't last too long.

    In terms of getting relief from the temporarily disimproved symptoms, you could try codeine (solpadene) which is available otc. Some people on here found that taking a ferrous bisglycinate tablet (available in Holland and Barret) at the onset of symptoms or at bedtime was helpful. However, generally the only thing that will make a substantial impact on the temporarily disimproved RLS is an opioid like Tramadol for which you will have to get a prescription from your GP.

    I hope you get through it and get off the pramipexole. Do bear in mind that the bad symptoms will only remain for a short while as you eliminate the drug from your system. Good luck.

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