7th week of pram withdrawal because of augmentation.Still wild rls.

[Katerina22]

I am off pram for 6 weeks and 2 days. Also on 250 mg of lyrica for 7 weeks now (I have been gradually uppering the dose) but still have wild rls especially at night and also during daytime if i lie down.50 mg of tramadol didnt help at all so i dont take it any more.Very worried about lyricas effectiveness.Any suggestions for me?Thank you!

[involuntarydancer]

You poor thing. HUGE kudos for getting and staying off pramipexole and enduring that level and duration of torture. It is unusual for symptoms to remain so bad for so long.

When I came off pramupexole I had a similar difficulty. My symptoms remained awful for a couple of months. I was prescribed lyrica but found it useless at that stage. In the end my GP prescribed OxyContin which was the first relief I experienced. Initially i needed the maximum recommended dose (30mg) to get reliable relief. At the same time I focused on getting my iron levels up. My symptoms gradually improved so that by the end of 6 months I responded to a cocktail of drugs, each at a low dose, of 75/100mg lyrica, 5mg OxyContin and 1mg neupro (which I alternated with another drug).

Using my experience, I would suggest that you need a much higher dose of tramadol for a while to get symptoms under control. You may even need something stronger like OxyContin. Most likely you will be able to reduce the dose in due course. I am slow to recommend opioids - it is a very unpleasant experience coming off them - but your symptoms are so severe I think you should consider them. It is obviously important to keep your dose as low as affords appreciable relief and to stay on it for as short a time as possible.

Make sure you have a high serum ferritin level.

I truly hope you achieve relief soon. Thinking of you ... keep posting.

[Madlegs1 in reply to involuntarydancer]

Also look out for any possible triggers in diet and medications . There are so many seemingly unrelated causes and interactions- things that we take for granted- that can upset the system.

Good luck.

[Belsheart in reply to involuntarydancer]

Ah, thank you. I was wondering what your cocktail was.

[Joolsg]

Oh Katerina,

I am so sorry you are still suffering from such severe RLS after such a long time off pramipexole. I second everything Involuntary Dancer says.

Withdrawal can go on for months for some people and it seems you are one of those people.

I also think you may have to add a low dose of OxyContin to get relief from the raging RLS. A low dose of 5mg twice a day may really help you.

I do think you should go back to your doctor and ask for OxyContin. You could then slowly reduce Lyrica to 100 mg a day.

Two medications at a low dose are sometimes more effective than one medication at a higher dose.

Thinking of you and wishing you relief soon.

Take care

Jools

[yam1973yr5]

Hi, Have you had your b12 checked also NHS information for dopamine for rls.

cheers,

[Joolsg in reply to yam1973yr5]

hi yam,

pramipexole is a dopamine agonist & katerina suffered augmentation so had no choice but to get off it.

[mantel]

I agree with others 50 mg of Tramadol is a low dose some people on here are on 200mg or more. I started on 100mg when I came of Ropinerole another type of DA. I don't think Lyrica will do it on its own. I don't know much about OxyContin but believe it is stronger than Tramadol . You could try upping the dose of Tramadol to 100mg, maybe twice a day if needed and if that doesn't help try the stronger OxyContin. I am sure if you add these stronger meds to the Lyrica you will get relief . So sorry it is taking so long.

[macewan13]

Hello Katerina22,

I came off the Neupro patch a month ago. I am taking 50 g of Lyrica and 50 g of Tramadol at 6.30 pm and the same before I go to bed. If the RLS breaks through during the night - about every second night but getting better - I take another Tramadol.

Hope this helps.

[Diz17]

I went through exactly what you went through on this. Lyrica didn’t help me and neither did a low dose of Tramadol. I switched to 10 mg of Methadone and that has been a lifesaver for me. I would highly recommend this option if possible as I have been going strong for 3 months with this medication and it has been a lifesaver and totally got me off Pramipexole. Good luck!

[involuntarydancer in reply to Diz17]

Hi Diz, it’s great to hear of your good experience on methadone. I’m not sure where Katerina is living but I suspect it would be difficult to find a doctor who would prescribe methadone in the UK, notwithstanding that it seems to be widely regarded as the optimum opioid for rls amongst experts.

[Katerina22]

Its 2 nights now that i used 100mg of tramadol together with my night lyrica dose and IT WORKED!!Ionly had one mild rls episode each night!Fingers crossed it will continue to work!!

[LotteM in reply to Katerina22]

Katerina, I am so happy for you! Enjoy and get all the rest you can to recuperate from your trying times.

[Katerina22 in reply to LotteM]

Thank you so much!

[involuntarydancer in reply to Katerina22]

SO delighted to hear that Katerina22. I suspect you will find that your symptoms will continue to improve gradually and you may ultimately not need so much medication (though that is by no means certain). A couple of things are worth bearing in mind: First, many people report that their rls responds better to a number of drugs at a low dose (as I have already said) so you are probably on the right track to have both tramadol and lyrica. This approach also gives you some options to play around with if the current system becomes less effective down the line - you can try increasing one or the other drug or even adding in something else. Secondly, I have see lots of reports that it is better not to seek 100% relief from the medications - the rls seems to ramp up more quickly if you are completely symptom free. It is better to have some minor symptoms and look for about 90% coverage. Drug systems seem to remain effective for longer that way.

[Joolsg in reply to Katerina22]

So pleased for you Katerina. Take care

Jools

[Katerina22]

Today was my 3rd good night!150 mg of lyrica at noon and another 150 mg lyrica together with 100 mg of tramadol at night WORK!!Only one mild rls episode each night!

[LotteM in reply to Katerina22]

Wonderful. I like accounts of things that work 😃!