Pregabalin not working so well anymore

[gobojo]

Hi, I wonder if anyone has some advice about this. I take 300mg pregabalin 3 hours before I go to sleep. It has worked really well for over a year but now not so well. My leg, sometimes one sometimes the other, keeps jumping in the air and waking me up. At the moment its at a level where I can cope with it but I'm worried I'm augmenting and wondering what to do if that is the case. I'm not keen on upping the dose if I can help it and I don't want to take opioids because of the constipation that is a side effect for me.

Thank you

[Joolsg]

Pregabalin has been reported to cause augmentation. The 2015 study comparing its effectiveness to Pramipexole showed the incidence of augmentation was lower than on Pramipexole but it does happen.I was on 150mg if Pregabalin together with 25mg Oxycontin. I had augmented on Ropinirole and so recognised it again when my arms and shoulders started twitching.

However, it sounds like the pregabalin is losing effectiveness rather than causing augmentation.

You could try splitting the dose. Take 150mg 3 hours before bed and the other 150mg just before bed. That way, the second dose will last longer and hopefully deal with the breakthroughs at night.

Also ensure your serum ferritin is above 100 as that can sometimes deal with breakthrough RLS.

[gobojo in reply to Joolsg]

Thanks so much, that's really helpful.

[Hidden]

Jools has given some helpful advice here.

Another approach could be to slowly reduce pregabalin by say 100mg (using a short term sleep aid such as a benzodiazepine to help if you're not getting restorative sleep. ) . Then go back up slowly, settling at the dose you're comfortable on.

I have done this twice in the past year and find i don't need to return to such a high dose of pregabalin. I reduce by approx 25mg per week. (I have been taking 300mg or thereabouts for approx 7 years).

Mind you, on those occasions, I wasn't experiencing augmentation or loss of efficacy, I was just looking to reduce my dose because of the side effects.

Speaking non-scientifically, sometimes changing the dose can reset things.

[Poe7]

I get constipation from opioids too but have find that a quarter to a half dose of Milk of Magnesia a couple of times a week helps a lot. I was switched by my neurologist from tramadol to methadone because I had augmentation from the tramadol. The constipation is happening less and less as I'm getting used to the methadone but the Milk of Magnesia worked great. I'm down to only needing it once in a while now. I had to figure something out with it because the only meds that work for me are opioids.

[Covenant1962 in reply to Poe7]

Hi Poe7, can I ask what dosage and how long you had been taking Tramadol before you augmented?

[Poe7 in reply to Covenant1962]

I increased from 100mg a day up to the max dose which is 400mg a day (100mg every 6 hours) over about a 3 to 4 year period. Because I started getting symptoms earlier and earlier until I just had them 24/7 and throughout my whole body Then for another 7yrs on that dose. But my drs just thought I was just getting worse because my RLS was getting worse. Not one of them knew about augmentation until I brought it up. And now the neurologist I finally found is absolutely amazing!

[Covenant1962 in reply to Poe7]

Thanks for sharing Poe7. So glad you have found a neurologist who knows his stuff and seems to care

[Kaarina Administrator in reply to Poe7]

Hi Poe7, Would you be willing to give more detail about the neurologist that you have found who is caring and knowledgeable about RLS please? I have a short list of doctors, neurologists that members have found to be helpful in the past. They are few and far in between and this information can help others members in our community if they ask for details of a good neurologist/consultant to see about RLS.

If you prefer you can of course private message me with the information.

[bedith6 in reply to Kaarina]

Hi Karina. Could you tell me if you have the name of a good neurologist near Solihull/Birmingham/ West Midlands . My RLS is out of control just now and I really need help. Thanks

[Kaarina Administrator in reply to bedith6]

Hi Bedith,

I am so sorry to hear this. I have a pretty short list of neurologists etc that forum members have recommended.

My geography is not that great! Are any of these ok for you to get to?

Leicester General and Nuffield Health Leicester Hospital, Dr. Esmaeil Nikfekr, Consultant Private Neurologist, NHS/Private

Mansfield Community Hospital, Neurology Department, Northamptonshire, NHS

Newark Hospital, Nottinghamshire Dr Attila Zambo - Consultant Neurologist, NHS

[bedith6 in reply to Kaarina]

Thank you Karina. I think I might be able to get to Leicester.

[gobojo]

Thanks that's really helpful I'll give it a try