Meds not working that well any more

[mantel]

Hi all, after augmenting on Ropinerol after 15 years of it working I switched to 100 mg of Lyrica and the same of Tramadol early evening just over a year ago. They were working great with no break through at all but over the last few

of weeks I have been getting problems again. For the past 2 nights only 2 hours of restless sleep. I can't bare the thought of going through all this again. Has anyone else had these problems and if so what did they do? I was wondering if it would be worth trying the Ropinerol again although coming off it was awful but over within a couple of weeks. The neurologist had suggested a'holiday' from this medication can often help. Do any of you think it is worth increasing the amounts of the current meds or will that work for a bit and then will I have to come off an even higher dose? Are there any other meds I can try? things have been so good for the past year and I had got used to a good nights sleep. Apart from a weeks course of Nitrofurantoin for a urine infection no new meds either prescription or over the counter have been added to the mix to cause this and I can't think of anything else that with regards to lifestyle that have changed. Any help will be gratefully recieved

[involuntarydancer]

So sorry to hear of that, Mantel. Such a worry when replacement meds seem to fail. I have a few thoughts which will throw out.

First, I wouldn’t rush to replace meds. Your dose of both meds is moderate rather than high at the moment. Madlegs had a problem with his meds losing effectiveness recently but he seems to be back on track now. Hopefully he will post. Maybe you could take a small amount of additional tramadol (it will take longer for any increase in lyrica to take effect). You might find you only need the increase for a while.

Second, How are your iron levels? Could they have dropped? Have you any addditional stress or dietary changes?

Regarding reintroducing ropinerole, I would be very slow to do this as I think once you have augmented on a dopamine agonist you augment again very quickly and then you have the torture of coming off it again. I have heard of people who managed to reintroduce a d/a but always in a VERY low dose and as part of a larger regime, ie not as a mono-therapy - usually alternating with and supported by other drugs. By way of full disclosure I have reintroduced a fragment of mirapexin to my regime but it is a tiny dose and I only take it 5 out of 7 days also I am taking other meds.

In general, my experience is that it is better not to try to obtain total coverage of symptoms as this seems to result in meds losing effect. 90-95% coverage seems to keep meds more effective. It’s like the beast is happy as long as it’s getting a look in.

[Madlegs1]

Nitrofurantoin does seem to aggravate rls in some people.

Give it a few weeks to wash out the system and follow IDs advice.

My problems were with oxycontin so not relevant to your situation.

Good luck.

[mantel in reply to Madlegs1]

Thank you . if it were to just be the antibiotics that would be great

[Hidden]

Hi, sorry to say when i was on Lyrica it lost it's effect as well. I started at 50mg, increased to 100 then 150 which then also stopped working. i am convinced it causes augmentation as well, it's just that it's been used for less time so not yet so well recognised. I started mine around 10 years ago for another condition and noticed the coincidental benefit to RLS, hadn't yet been researched but persuaded Dr to keep me on it as so good. I found it quite hard to come off, especially the last 25mg as restlessness is a side effect of withdrawl as well. I haven't found a good alternative but my feeling is that I might not have been as bad as I am now if I hadn't taken Lyrica. - though very recently better following a illness with fever - effect still there - as per a recent post.

Sorry to be the bringer of bad news. It's likely that increasing the dose will help for a while but then as you say you have to come off the higher dose.

I'm sorry I don't have an answer though. I'm just explaining my experience. Am seeing folk post more often now the same effect

[macewan13]

Hello Mantel,

I am in a similar situation to you. I was augmenting on the Neupro patch. My doctor in France, a RLS specialist, has recommended a 6 week ´holiday’. I am on 100 grammes of Lyrica and 100 grammes of Tramadol at 6.30 and another 50 grammes of Tramadol if I have problems during the night, which I do at the moment as I’m coming off the DA.

According to her, the 6 week break from a DA is sufficient before going back onto it again. I hope this helps.

[involuntarydancer in reply to macewan13]

I think your consultant is about as correct as mine was when she assured me that it is not possible to augment on neupro.

You may be different - I hope so for your sake - but my experience suggested that augmentation re-emerges quickly even after a drug holiday.

I used an alternating system for a while in which I took a number of 6 - 8 week long breaks from neupro. Thus, I used the neupro until I noticed the symptoms of augmentation setting in (earlier onset of rls, spread of rls to arms, more vigorous symptoms, a higher dose required - incidentally this tended to coincide almost exactly with a re-emergence of my impulse control issues). Then I would stop neupro and start an alternative treatment for about 8 weeks. Unfortunately, the augmentation started with the neupro reliably after 6 to 8 weeks every time so taking a 6 week break from neupro did not stop me augmenting on it pretty quickly again once I resumed it. I only pursued the system for about 6 months or so - not long enough to establish whether augmentation started to set in slightly earlier each time but I would expect that to happen ultimately.

If you do reintroduce neupro, I would suggest making sure your serum ferritin is as high as possible (there is a documented link between augmentation and low iron levels) and keep the dose of neupro low for as long as possible and perhaps eliminate it temporarily rather than increasing it, if you find it ceases to be effective (to avoid a too painful withdrawal from a higher dose). I truly hope it works better for you than it did for me.

Incidentally, I noticed Dr Buchfuhrer mentioned recently that he has observed that pregabalin can be more effective for people who never took a dopamine agonist than it is for those who have previously augmented on a dopamine agonist.

[Hidden]

It isnt advised to re-start a dopamine med once you have augmented on it, or even start another dopamine med, you will augment again. I do know that some people after a long break as in a year go back to trying one again and find it can work. Its best to do a drug holiday BEFORE you augment.

[mantel]

Thanks for your help everyone . Things seemed to have settled down again so may have just been the antibiotics also It could be the menopause too. I thought all the monthly stuff had finished as it had been 6 months since the last one but a week or so after the symptoms started reoccuring I had another period. I always used to notice an increase in leg activity just before and during my period. Not sure if this is the same for others? I am hoping I won't get many more as I am 55 now . I have decreased my meds back down to what they were and will see how that goes. I do agree that as time goes on more people will report augmentation on other drugs like Lyrica . Years ago I was prescribed Co Proximal for pain relief and I noticed that they would really help my restless legs even though I did not know what the condition was back then. I just noticed that when I took them the uncomfortable sensations in my legs that kept me awake would stop and I would get a good nights sleep. They stopped prescribing them for people some years ago ( maybe just in the UK ? ) because of overdosing problems. It may have helped other RLS sufferers.