Restless Legs Syndrome

[Titbit]

Is anyone else experiencing a shortage of Ropinirole for restless legs? Yet again my usual pharmacy has run out of this drug and it’s the only drug I’ve found so far, that works for me. I can’t work out if it’s my pharmacy not ordering in enough or whether the pharmaceutical company isn’t manufacturing enough. There doesn’t seem to be an alternative that I’ve found unless someone can tell me differently. If it’s the latter then my question to the pharmaceutical companies is:,‘Why are you not making enough of these drugs which bring huge relief to so many people? Without them it’s impossible for sufferers to sleep or get any kind of rest’. I would be very interested to hear the experiences of others.

I should add I have found a non-prescription tablet which I find offers limited relief - Naveh Anti Leg Cramps. I take it when the pain and restlessness begins and they help get me through to bedtime when I take Ropinirole. I’ve only been doing this for a very short time so don’t know how it will work out long term.

As I said I would love to hear about the experiences of others suffering from Restless Legs.

[Joolsg]

I asked the manufacturers and they say there is no issue. It may be a local issue.It may be a good time to follow the advice you were given last time you posted and reduce Ropinirole and replace it with pregabalin, gabapentin or a low dose opioid.

Your RLS has been made more severe by Ropinirole. It actually increases the severity of RLS. That's why you have RLS in the morning.

It's no longer prescribed by experts because of this common complication.

[SueJohnson]

You can always switch temporarily to pramipexole. If you are taking 1 mg of ropinirole, you would need two .088tablets.

[Strike26 in reply to SueJohnson]

hi Sue- we talked about Ropinirole last year and at that time it was working for me. But, I will now eat “humble pie” and say your prediction was right about augmentation. I am just starting on Gabapentin. Too early to say if it is working but RLS combined with a spinal issue made the decision inevitable. Thanks.

[SueJohnson in reply to Strike26]

I am so sorry to hear that. I know I gave you advice on coming off it and on how to take gabapentin but that was 5 months ago and as you said at that time you weren't interested. Do you need me to give it again?

[Strike26 in reply to SueJohnson]

No Sue- I wasn’t clear. Sorry!!! I was thanking you for the advice and wishing I had listened earlier- you were right!!! Ropinirole seemed to be working when we last spoke, and then it wasn’t. I am a bit (my daughter’s would say, a lot!!!) stubborn so it took a while to accept that- my doc is following exactly your recommended dose regime , and hopefully something will, at last, work for me. Thanks again.

[Strike26]

hi- it’s neither of those. Intermittent shortages of meds do happen but the continual problems of the last 18 months can be directly attributed to Brexit.

My local chain of pharmacies has posters asking customers to contact their MP to complain- the disruption begins at source (mainly S E Asia), then with the EU and finally getting them into the UK. I looked into this in detail last year when I had to go “cold turkey” for 6 days- it was no fun!!!

[Madlegs1]

It is Europe wide.

In Ireland there is a site which can tell what meds are not available. And when they are expected to return. Usually manufacturing problems due to shortage of supply from SE Asia.

For 2 months I couldn't get Oxynorm 10mg. Oxy 5mg was available. Back now-- but for how long????

It certainly leaves you a bit jittery about a medication which can only be prescribed monthly.

[Gillyfran]

Hi to you

I recently went to the pharmacy and they can’t get any!!!! I have enough until the end of September. I also recently read this week that the manufacture of them is being stopped. I am in panic now as I have been on Ropinirole for 17 years. I am thinking of trying to get an appointment privately with a neurologist.