I was diagnosed with RLS about 6 months ago. My consultant prescribed Ropinirole but after reading adverse comments about it , I told my GP I did not want to take it and I am now taking 300mg of pregabalin twice per day. Unfortunately my symptoms are not improving . My GP has now prescribed Pramipexole along with the pregabalin. Does anyone have experience of taking this drug for RLS?
Treatment of RLS with Pramipexole - Restless Legs Syn...
Treatment of RLS with Pramipexole
Avoid. It's the same class as Ropinirole but even more likely to cause increase in symptoms.Why are you taking pregabalin twice a day? For RLS, it's more usual to take at night only as RLS follows the dopamine cycle. I suggest you try taking 300mg 3 hours before bed and 300mg as you fall asleep to see if it improves the RLS.
Did you raise serum ferritin above 100 and get off Amitriptyline? That is another way of improving the RLS.
Other meds that worsen RLS are Statins, anti depressants,anti histamines and some beta blockers and PPI gastric meds.
If raising ferritin, stopping Amitriptyline and taking pregabalin at a different time do not help, you may have to see a neurologist to get a low dose opioid. Sadly, most UK GPs will try to force you to take dopamine agonists ( Ropinirole, Pramipexole and the Neupro patch) before they will consider opioids.
Hi Joolsg,I was not aware that Pramipexole was in the same class as Ropinirol.😣
My GP prescribed Pregabalin twice per day. Your suggestion that the full dose should be taken near to bed time makes sense and I will follow that up.
I am taking an Iron supplement but my last blood test did not indicate any increase in my iron levels. My GP does not listen when I mention that my iron level should be above 100.
I am actively seeking a consultation with a Neurologist to try to find better guidance and hopefully some relief from the awful symptoms of RLS.
Thanks so much for your interest and help.
Hi Don, even many neurologists lack up to date knowledge about RLS, thus be careful whom to consult.
Regarding the iron. It is not the 'normal' blood iron levels that need to be above 100, but the ferritin, an indicator of body stores of iron. And even ferritin is a poor indicator for brain iron, that is supposed to be low in people with RLS. Have a look at the updated treatment guidelines for RLS in the Mayo Clinic Proceedings of 2021: mayoclinicproceedings.org/a...
Sadly, we have to research everything ourselves because RLS is not taught to doctors in the UK. They do not realise the extent of Augmentation (worsening of RLS caused by dopamine agonists like Ropinirole, Pramipexole and the Neupro patch) so they simply prescribe these drugs because they are listed in their drugs handbooks.A UK GP will probably only see 1 or 2 RLS patients so will not see the worsening of the disease. The top experts in the US see hundreds of RLS patients every week and see exactly which drugs help and those that don't.
The Mayo algorithm is written by the world's top RLS experts.
It's not yet accepted here in the UK and NHS and NICE are therefore slightly outdated.
Have a look at the Mayo algorithm and the RLS UK website which set out the dangers of augmentation and the best treatment for RLS.
If your GP is willing to update their knowledge and learn about the disease, ask them to look at both websites.
Treatment is now:
1. Raise ferritin, by IV infusion if needed.
2. Replace meds that trigger/worsen RLS ( anti depressants, sedating anti histamines etc)
3 If 1 and 2 don't help, prescribe Alpha2Delta ligands ( pregabalin, gabapentin).
4. For refractory RLS consider low dose opioids like tramadol, codeine, Oxycontin, Buprenorphine.
The timing is also important. Pregabalin for pain is given twice or more a day to cover 24 hours. RLS follows the dopamine cycle so is worse late evening and during the night. Most RLS drugs are therefore taken late evening and at night.
Very few neurologists know about effective treatment for RLS either so, as Lotte says, you need to make sure the neurologist is aware that dopamine agonists are no longer first line treatment and that iron panel bloods should be assessed first.
There are a handful of neurologists in the UK who know more than the basics.
Professor Walker at Queen Sq is one of those and he will do phone consultations. His waiting list is very long though.
If there is a sleep clinic near you, that might be a better option as sleep specialists are more aware of RLS and PLMD and more familiar with effective treatments.
Try increasing your serum ferritin and taking the pregabalin at night only. You may even find you can take a lower dose as 600mg is above the average dose.
Avoid if you can, opiods are helpful, pregabalin didn't help me. Clonazepam made my legs worse.
Hi DonI have severe osteoarthritis, for which I take Oxycodone, Naproxen & Paracetamol. I started with RLS many years ago (my Mum had it too). I was eventually prescribed Pramipexole and it absolutely works. Have been taking it for years (2 hours before bed) with no side effects whatsoever.
I woke up at1am one night in a lot of pain (back & shoulder) and took 5ml morphine. Never again! It triggered the RLS. In future, I will put up with the pain. Good luck.
Keep away from Ropinirole. I think opioids work
I take Ropin, .75 mg a couple of hours before bedtime. I came off it for three months after it seemed to stop working/possibly augmented. My symptoms got markedly worse after that and I did not want to take Gaba, due to very adverse effects of friends when trying to come off it. People on here will warn you off Ropin, and refer you to the NICE protocols, but it has been again working well for me for the past year.
If you augment again and you probably well, don't be afraid of gabapentin. If you need to come off it and do so very slowly there will be no withdrawal effects. You friends probably came off it too fast. Have you had your ferritin checked? If so was it above 100?
Yes, I have had experience with ropinerole. This medication, if taken long enough, will make restless legs much worse. It is not the standard medication for rls anymore. I got off of it and am now on Gabapentin, which works for me.
many RLS folks find one or the other work well, for a while then you augment and they stop working. See a RLS specialist. Find one on RLS.ORG.
Pramipexole is of the same class of drugs as ropinirole. Instead I would as for opioids. To come off pregabalin ask for a prescription for 25 mg so you can reduce very very slowly or you will have withdrawal effects. If you do so very slowly you will have none.
Thanks Sue,My GP did not make me aware that Pramipexole was similar to Ropinirole and did not highlight the side effects.
I will think carefully before taking the prescription.