Last year I was admitted to hospital following a fall. My dose of Ropinerol was withheld for 2 days as I was told it wasn't on the hospital prescription. Unfortunately I couldn't access the Ropinerol as it was locked away. I quickly developed DAWS and was in a terrible state because of the lack of the Ropinerol. Previously I found it very useful in combating lrs and help with my Parkinsons
Hanliensian
That's terrible !!! For next time: You can download a Medical Alert Card which also lists medications they shouldn't give you from the RLS Foundation at rls.org/file/forms-for-offl.... I don't know whether you need to be a member - $45 for an international membership but the membership is worth it because it has a wealth of information. Where was your doctor in this? He should have contacted the hospital to let them know you needed your medicine. Also, you could hide your medication from them so it isn't locked up but that might not work if your clothes are locked up. or you could call a friend to bring you your medicine without telling the doctors. Another idea is to have your doctor write up a note saying you need your medicine that you could carry with you.
Great advice.Isn't it terrible to be having to advise people to evade/ circumvent medical protocols for the benefit of vulnerable patients.
Aren't there patient advocate personnel in UK hospitals-- think I read that somewhere?
Good luck Hanlieson.👍
I'm so sorry to hear this but not surprised. Doctors and hospitals know nothing about RLS. They wouldn't withhold insulin or epilepsy meds!Because the UK is so appalling in treating RLS, I carry a medical alert sheet & a pack of my meds with me at all times.
You should send a formal written complaint to the hospital and ask them to revise their procedures. DAWS is very real and serious. I would even consider legal action as it seems to be the only way they take things seriously.
This happens too often.
When I had to go into hospital for an operation I was nil by mouth from 6AM. I took one Ropinerole then but my surgery was delayed until midday when I should have taken my second one. I am on 4mg a day and take the other two at bedtime. Ihad told them all this but they didn’t take it seriously. Unfortunately there is no other way of taking this drug than by mouth. A doctor friend had told me that you can ‘ stick one up your bum’! But I didn’t take his advice and wished I had. As I came round my legs started jumping horrifically and the nurses thought I was having a fit. I was able to explain but I was also very sick so couldn’t keep a tablet or water down. The anaesthetist hadn’t take n any notice of this either! So two very kind nurses massaged my legs really hard, one each side of the bed for over an hour but then had to go elsewhere. I went through hell afterwards but somehow they got a tablet to stay down and it was another hour of hell before it began to work. Of course I couldn’t get up and walk which would have helped! This is a very real problem and one reason I want to come off this awful drug just as soon as I am finished with my cancer treatment. So even if you hide your tablets (which I had) it doesn’t always work!
That is awful. But those two nurses were certainly kind. Have you had your ferritin checked? Improving it to 100 or more helps 60% of people who have RLS.
No but I am ok with the Ropinerole for now as long as I take it on time. I will put off having the iron checked until I have finished my cancer treatment and can concentrate on coming off Ropinerole. But thank you. And yes I often think of those two nurses and wish I could thank them. They were true angels
Ropinerole titration 
Ropinerole to Pregabalin
Swapping pramipexole for Ropinerole
Ropinerole not working
Going off of ropinerole
