Continuing nightmare after stopping Pramipexole

[Sheelaghj]

Hi all! I stopped Pramipexole about 2 months ago and am still really struggling. Luckily though, I have a very well informed, sympathetic GP , who has tried me on several different combinations of drugs to replace the Pramipexole whilst withdrawing. We eventually found that Oxycodone was the most helpful. The trouble is, I can't seem to find the dose that gives me more or less 24 hour cover, also I am worried about being on this type of drug long term. People keep saying that I will feel so much better after coming off the Pramipexole, but I haven't found this yet. I am constantly tired, stressed and depressed, trying to manage my symptoms. I long to go back to the early Pramipexole days, when I just took 1 tablet each day, and then got on with my life. I was working as a nurse, went out a lot with friends, had family holidays etc. Now I find all of those things almost impossible, and have become like a recluse. My 22 year old son is very worried about me, and I feel bad about that too. Is anyone out there taking Oxycodone, long or short acting? Any advice on the way forward? I would really appreciate any help you can give me!!😢

[Hidden]

I take the long acting Oxy - Targinact twice a day and sometimes I either need to augment it with 100mg of Tramadol in the middle of the day or middle of night.

I find I can only get proper relief if I take Iron, 40mg of Oxy twice a day, Tramadol 100mg AND cannabis. If I don't take all that I have anywhere from mild to severe RLS all over my body.

[Joolsg]

I'm on 10mg oxycontin ( Extended release oxycodone) twice a day but also 125-150mg of pregabalin at night. Oxycodone is the short acting version. I was in a complete state with just the oxycontin, suffering terrible panic attacks/anxiety/depression. Diazapam helped the panic attacks. I then started pregabalin slowly 25mg every 3 days on the recommendation of Dr Buchfuhrer ( RLS expert) and he said it would stop anxiety/panic attacks and help reduce RLS and increase sedation to help sleep.

He was right and after 2 weeks on pregabalin ( together with the oxycontin) I felt completely different. I am now managing 5/6 hours sleep a night and then I can go back to sleep mid morning for 2 hrs as I am retired.

I agree with you though. Life on dopamine agonists was so much better until they bit me in the ar** with augmentation and withdrawal. I could even drink the odd glass of wine. I live in hope that new research will develop a dopamine agonist that doesn't cause augmentation.

Stay positive as it is early days for you. Have a chat with your GP about adding a low dose of pregabalin at night and switching to oxycontin to give longer coverage. Two meds at lower doses are often more effective for severe RLS than one at a higher dose.

Take care,

Jools

[involuntarydancer]

Hi Sheelagh,

I really feel your pain. I could have written your post just under a year ago. It took me ages after I came off pramipexole to find a workable treatment and my augmented RLS did not seem to settled down to pre-augmentation levels for an inordinate time.

Like you I had a sympathetic GP and he was prepared to prescribe oxycontin (slow release oxycodone) which was the only thing that helped with my symptoms initially. I found it very difficult to settle to a regime on oxycontin. I needed 30 mg each evening to deal with my RLS at night. This dose caused difficulties in that I started to have withdrawals in the morning and felt like I needed another top up at that stage. I really didn't want to take any more oxycontin. Also, although 30mg oxycontin dealt with the jumpy legs, I suffered from nocturnal alerting caused by the opioid which kept me wide awake all night. I was in despair and very similar to you, my grown up children were very concerned. I felt like I was barely existing.

I had a prescription for pregabalin (Lyrica) from my sleep consultant. It had been absolutely useless on its own but I started taking it to supplement the oxycontin and help with sleep. Then, about three months after I took the last pramipexole, I started using 1mg neupro patches (very reluctantly as I did not want to resume any dopamine agonist but my sleep consultant was very insistent). So now I was on oxycontin, pregabalin and neupro. This worked much, much better than just oxycontin on its own. I needed much less oxycontin and was not on a very high dose of pregabalin either. So definitely a cocktail of drugs was much more effective than relying on one drug and the side effects were less significant thanks to the lower dose.

I was also taking oral iron as my serum ferritin was low (39). As my iron levels started rising my symptoms improved a lot and I was gradually able to further reduce the dose of the oxycontin and the pregabalin.

Then I discovered kratom (sadly illegal here and in UK - I have to order it by post from Holland) but it is very helpful for the rls symptoms and meant I could further reduce oxycontin. I definitely do not like the fact that kratom is illegal but am not prepared not take it as it feels more benign (for me at least) than oxycontin.

I was ultimately incredibly fortunate in that my symptoms improved to the point where I was able to discontinue oxycontin. Now I am managing on a regime in which I use kratom for a few weeks and then have a few weeks on 1 mg neupro. I am hoping by keeping to the minimum dose of neupro and not taking it all the time I will avoid augmentation.

Sorry to rabbit on but I found reading about other people's experience was the single most useful means of finding a way to deal with my RLS and I hope to pass that on. I would summarise as follows:

* Get serum ferritin levels checked and unless they are already high take iron supplements - consider an iron infusion;

* Consider using smaller doses of a wide spectrum of drugs;

* Although it is not ideal to return to dopamine agonists post-augmentation it is worth considering neupro as an option once a good time period has elapsed since finishing the last pramipexole (at least three months). Neupro is a slow release version of Ropinerole and it is thought that the slow release aspect means that augmentation does not occur as quickly. Only take the lowest dose of neupro and do not take it continuously;

* Consider kratom - I am sorry to urge something that is illegal but it is very effective against RLS and I find it much less intrusive into everyday life than oxycontin.

Dr. Buchfuhrer (world expert in RLS) states that there is no reason why anyone with RLS should not ultimately manage to live a fairly normal life. It is difficult to get the right treatment and takes a lot of tweaking and experimentation. You have to do a lot of this alone as medical professionals do not generally know a lot about the condition. It takes courage and tenacity but I am sure you will get there in the end.

[Madlegs1]

I find 10mg of oxycontin twice a day works very well. If I need to top up at 5 am I take Paracetamol, which gets me to 8.00 am.

One year on this regime.

[dancer2]

I can certainly relate. After many years on Pramipexole, it augmented. I saw Dr. B, who started me on opiods. I started with Methadone- couldn't take it. Then tried Oxycodone - had severe nausea and anxiety. Then tried Hydrocodone - same symptoms. Finally, tried Tramadol and had same symptoms. Now on Gabapentin and Neupro. The past 5 months have been absolutely horrible. The nausea continues and is constant. I have anxiety and depression that I have never had in my life. Now on Klonopin and Trazodone. Not sure how much more of this I can take. I have tried all the prescription meds and holistic/ over the counter meds for nausea. Nothing works.