stopping pramipexole

[Arkangel]

I have just told mt GP that I was augmenting on Pramipaxole, she told me it was the best medication for RLS and to carry on. When I said I wanted to stop, she said I could just stop it immediately. Has anyone done that and what are the consequences. I can't imagine it being worse that what I am experiencing now. Please advise.

[Heatherlss]

You MUST not stop it abruptly. The withdrawal would be unbelievable. I tried going off cold turkey. I honestly wanted to cut my legs off that night. It had become so unbearable. Btw, what dose are you on ? That is also going to be a huge factor.

[Arkangel in reply to Heatherlss]

Thank you for replying so quickly. I am taking 0.088mg x 3 at night and one in the morning. I am in agony now, symptoms all day and no sleep.

[Jelbea in reply to Arkangel]

Dear Arkangel Heatherlss is right. You must not stop the pramipexole cold turkey. It can be quite dangerous to do so, especially as you have other health problems. You may need to start on gabapentin or pregabalin and very slowly reduce the prami. I am sure some of the other experienced members will be along soon to give you more advice. So sorry to hear of your suffering and I hope you will get this sorted very soon.

[Arkangel in reply to Jelbea]

Thank you Jelbea, I am really disappointed with my doctor. I will reduce slowly, I have Bruprenorphine patches for my ME, so that should help. I also have Oramorph to take when needed.

[Sumoucat]

Ditto to what the others have said. Additionally, ditch your primary care person. Oi gevalt! Starting on Gabapentin or pregabalin will help. Cut your dosage of pramipexole in half while you start the other med. Stay on that half dose for a while. I think I did 10 days, and many thought that was too short. Cut the dose in half again, rinse and repeat. The pills are surprisingly easy to halve and quarter. Good luck with this. I know what you're going through.

[Arkangel in reply to Sumoucat]

Thank you for your support. Sumoucat, excellent advice here.

[Hidden in reply to Arkangel]

Good advice from Sumourcat.

If you start gabapentin, start it before reducing the pramipexole. You will probably need at least 900mg.

[Arkangel in reply to Hidden]

I can't tolerate gabapentin, but I am on Buprenophine patches for ME/CFS and I have morphine and codeine available. I can't imagine the symptoms being much worse than they are now.

Thank you Manerva

[Hidden in reply to Arkangel]

OK, the Buprenorphine should do it. You may get some withdrawal effects, but as I found, the augmentation generally improves as you lower the pramipexole.

[Arkangel in reply to Hidden]

Here's hoping!

[marsha2306]

You must, must, must wean off of it. I was only on it for 3 weeks and my doc said I could just stop cold turkey. I was up all night for an entire week.

[Arkangel in reply to marsha2306]

Thank you Marsha, I have started to reduce slowly, following the advice received on this site. I am usually awake all night anyway and in pain, which is why I am stopping the pamipraxole. What are you doing to control your symptoms now?

[marsha2306 in reply to Arkangel]

Gabapentin.

I’ve been on it since 2015. I was taking 600 mg very effectively. Due to a horrendous nerve condition I’m now taking 2100 mg without any symptoms at all but a lower dose had been working for my RLS.

[Arkangel in reply to marsha2306]

I did try it some years back, but I had frightful hallucinations. I really don't want to try it again. I'm glad it works for you.

[Homestead]

I am not sure about stopping it just like that .lt seems a bit strange to me.l am seeing my doctor on Wednesday and l will be asking about stopping that drug as well .l have been on it for a very long time .l know it as sifrol .lt is the same drug that is used for Parkinson. The side affects are very real on this the one that got me was excesive compulsive disorder.That l can truthfully say has come close to ruining my life. Sounds a bit meladromatic but l can assure you it's very true

It does help with RLS but l take 6 a day now and then quiet often that still doesn't work .And of course with then starting on the cymbalta my RSL was going through the roof

I will be asking for something else when l see my doctor on Wednesday.l have been told about gapapentin so l will be asking about that.lt is so unfair there doesn't seem to be much for restless that you can get.And l dont know if it's my imagination but people and doctors seem to dismiss it like it's nothing .oh ok so you have to keep moving your legs oh well.They have no idea what is does to your life and what it feels like Because until you have experienced it yourself they seem to dismiss it like it's nothing.

[Arkangel in reply to Homestead]

Yes, Homestead, I agree. Most doctors don't take it seriously enough. I am in pain all the time and my legs are really sore to touch. I am following the advice from this forum and reducing slowly. I can't remember when I last slept for more than a few hours and I'm always hungry, so the symptoms of reducing can't be much worse. I hope you have success with your doctor's visit.

[Netball-50]

Hi I've weaned off it from 4 0.088mg tablets to now on half so I can come off them and take gabapentin. I'm taking gabapentin 900mg at night not sure if I should b spacing them out but seem to working at night. Going to come off prami middle of Feb c how I get on just with the gabapentin. My GP admitted they don't know about RLS so try wean off slowly it's hard and gets worse before it gets better but maybe ask to go on gabapentin instead but wean off prami first. Or learned friends on here might advise you different we all trying to try different ways to sleep without twitching xx

[Arkangel in reply to Netball-50]

Thanks, Netball-50, I'm two days on 1/2 dose now. Pain bad and no sleep, but it wasn't too good before. Good luck with your reduction, I hope it goes well.

[231005]

I was advised to gradually reduce my pramipexole because of augmentation and although it was hard for a couple of weeks, I persevered. I was then put on Pregabalin which took a few nights to get into my system but is now fine. I take 50mg capsules about 8.00pm . If I take it later I suffer when I go to bed. But I no longer suffer in the afternoon or early evening watching tv so at the moment I’m quite happy. Good luck to you.

[Arkangel in reply to 231005]

Thank you for your reply, I'm glad it's worked out for you - I'm feeling quite positive.

[BLUES60]

PmPlease don't stop completely, the advice you have had from your doctor is very irresponsible, and I should know because I've done it, a very bad drug miracleous for a while but disastrous in the long term, and yes it will be worse than what you are going through now, so wean yourself off them nice and slowly then will be OK, I've still got rls but compared to the time I was augmenting and withdrawing I am definitely in a better place, you will improve when you are off that terrible drug, remember come off them slowly, good luck

[Arkangel in reply to BLUES60]

Thank you BLUES60, I am following the advice form here and coming off slowly. So grateful for this forum.

[Merster]

Merster here. I started out on Pramipexole and found it to be terrible. My mother had been on ropinerole and being quite successful. I switched and found it much better. Maybe you could have more success with the requip.

[Arkangel in reply to Merster]

Hi Merster, thank you for your reply. I was on ropinerole for many years until it stopped working for me. I then changed to pramipaxole, which was again good for years. Now I just want to try coming off all medication. I appreciate your input. Thank you.

[Hidden]

I know exactly what you are going through!!! I was on three different meds over a week. First I rebounded on ropineral, was switched to pramipexol, then gabapentin!! . All these meds made me phycologically crazy as well as physically crazy. The mixture over a week or so , then I stopped all meds and went through a withdrawal of terrible shakes for two nights. Though I was going insane. I made an appointment with a neurologist that specializes in RLS, Parkinson's, and mood disorders. He was a blessing!!! He put me on Horizant 600 mg to be taken at 5pm daily. This is a time released gabapentin. I am forever grateful to this doctor and the Horizant. Restless legs are under control. Now I'm being treated for insomnia because of the damage the RLS has done to my sleeping. try to find a good neurologist to help you out. I am empathetic to what you are experiencing. Good luck!

[Arkangel in reply to Hidden]

It sounds as though you have had a really hard time. It isn't easy to get to see a specialist here in the UK. My Doctor seems to think the RLS is an inconvenience more than anything else. How are you being treated for insomnia? I can't remember what it is like to sleep more than 2 or 3 hours a night. Thank you for your good wishes.

[Hidden]

My primary doctor has me taking trazadone. However I may be having some side affects with anxiety so she is reducing my dosage. It has helped somewhat. She is thinking there is a possibility of trazadone is causing me to have the anxiety instead of it reducing anxiety. As she told me..we are all different when it comes to medications... referring to trazadone. I think your doctor would not see RLS as an "inconvenience" if he was experiencing it. Shame on him for not taking you and this disease seriously.

[Arkangel in reply to Hidden]

My doctor may think that my COPD and high blood pressure are more serious - but it's the RLS that makes me want to die! Are you being offered an alternative for the insomnia?

[Hidden in reply to Arkangel]

I am pretty discouraged right now. Been awake since I went to bed at 11;00 pm. Insomnia!!! I have read up on the Horizant I've been taking for RLS. It works well for most people , including me. However, after checking out the side affects it does cause insomnia. Now I'm dealing with another demon!! Sent a note a few minutes ago to his patient portal asking what the next move is. RLS has improved but the insomnia is driving crazy. My PCP is weaning me to a lower dose on the trazadone (to help me sleep...and it isn't) thinking my body is dealing negatively with that. Never liked trazadone, anyway. My body has always worked adversely towards so many meds. What I am needing is a good nights sleep. Haven't been able to work in 3 months because of this whole mess. Especially the lack of sleep.

I hope you are doing better. We are not alone on this website!!

[Arkangel in reply to Hidden]

I am so sorry to hear this, the insomnia is terrible isn't it. I can't remember when I had more than 3 hrs sleep. It's so depressing. As you say, it's good to find other people who understand on this website. I wish you well.

[pilateskid]

Do not stop pramipexele immediately, come off slowly.....I'm stopped and had the most horrible augmentation.....could happily jumped out a window. My life safer was having the money to go private....my neurologist was fantastic, asked me loads of questions and mentioned augmentation before I did....now on a 3mth cycle of 2 different controlled drugs. Hope you find peace.

[Arkangel in reply to pilateskid]

Thank you, I can't afford to go private, but I'm really happy that you have a regime that works for you.

[smilingjane in reply to pilateskid]

Hi Pilateskid

Scrolling few some older msgs and struck by your msg.

I have been on controlled drugs for a year (longtec) after presenting at A&E early one morning because I was augmenting. RLs had spread to arms and it was with with me 24/7 I had to stop work because I couldn't even sit at a desk, never mind lie in a bed.

I fear though that the Longtec might eventually stop working.

Is that why you are on a 2 med cycle, to mitigate that I wonder?

Thank you for reading this and I hope that alls okay with you?

Jane 😊

[wickedrls]

no you cannot