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Re: Attempting to get off Ropinirole - again

Posted: Tue Jan 08, 2019 6:35 pm
by Polar Bear
Legs ... How difficult it must have been for you without even Codeine. I applaud you.

A family member is a Prescribing Nurse and I have shown her my Meds regime, the Pregabalin, Ropinerole, Codeine.
She reckons my GP will increase my Pregabalin at 25mg each time. I am now on 3.5 Rop/100 Pregab.

It has been suggested that as I take each new .25mg Pregab, I should drop Ropinerole by .5mg.
This would mean The Ropinerole would eventually be at .5mg when I was on 250mg Pregab. and Ropinerole at 0 if/when on 275 Pregab.

I imagine that at some stage on the downward journey when the 'storm' arrives I will be in my GP Surgery ... in desperate need.... I don't feel just as confident now, as I did previously, about what I call 'reasonable' opioid support. Time will tell.

This step has been many years in the coming.

Re: Attempting to get off Ropinirole - again

Posted: Tue Jan 08, 2019 7:16 pm
by legsbestill
My sleep consultant had me on pregabalin when I was withdrawing from pramipexole but unfortunately it did nothing for my symptoms at the time. She totally ignored my plight when I was without sleep for nearly 3 months after coming off pramipexole even though I contacted her several times. I now wish that I had emailed her hourly every night that I suffered. My GP eventually prescribed oxycontin and I started to recover as soon as I got the legs under control. My symptoms now are unrecognisable from those bad days. I am sure you will not regret seeing this through PB.

Re: Attempting to get off Ropinirole - again

Posted: Wed Jan 09, 2019 6:50 am
by Polar Bear
I checked with Dr B and he has confirmed that it is ok to come off ropinerole 3.5mg cold turkey, that he often does this with patients. He called it a moderate dose. But that it would need the heavy guns opioid to ease the path. I will taper.
Thanks for your support.

Re: Attempting to get off Ropinirole - again

Posted: Fri Jan 11, 2019 2:44 am
by badnights
The reason to do it cold turkey is so that it hurts for less time. Remember that if the taper becomes too agonizingly everlasting.

Re: Attempting to get off Ropinirole - again

Posted: Fri Jan 11, 2019 3:23 am
by ViewsAskew
badnights wrote:The reason to do it cold turkey is so that it hurts for less time. Remember that if the taper becomes too agonizingly everlasting.


As hellish as it is to jump ship, I'd do it again. I did the taper - it actually was OK to a point. But, at some point, it was just endless hell.

Betty, that may be a good way to look at it. If you taper and it's OK, keep tapering. Once you start having hell, just stop.

Re: Attempting to get off Ropinirole - again

Posted: Sat Jan 12, 2019 7:49 pm
by Polar Bear
Yes, thanks for that, Ann and Beth.
That's how I see it, more or less. Do the taper until I can do it no longer. That's when I will visit my gp looking to jump and seeking whatever guns he is willing to give me. That bit seems quite far ahead just yet.

I was surprised at the suggestion to go cold turkey from 3.5mg.
Yes, 4mg is the official max but those 'in the know' which includes Dr B, understand that Ropinerole/Requip should be 1mg max. Hence also surprised that my 3.5 mg Ropinerole was referred to as a moderate dose.

Re: Attempting to get off Ropinirole - again

Posted: Sat Jan 12, 2019 8:09 pm
by stjohnh
Polar Bear wrote:I was surprised at the suggestion to go cold turkey from 3.5mg.
Yes, 4mg is the official max but those 'in the know' which includes Dr B, understand that Ropinerole/Requip should be 1mg max. Hence also surprised that my 3.5 mg Ropinerole was referred to as a moderate dose.


Well, remember that ropinirole is also used for Parkinson's disease. PDR says ok up to 24mg/day for that.

Re: Attempting to get off Ropinirole - again

Posted: Sat Jan 12, 2019 9:08 pm
by Polar Bear
Yes, Holland. But I didn't think it would be considered a moderate dose with regard to RLS.
Possibly it was meant as a general comment and not specifically relating to RLS.

Re: Attempting to get off Ropinirole - again

Posted: Mon Jan 14, 2019 7:26 am
by badnights
Possibly it was meant as a general comment and not specifically relating to RLS.
Yes, I'm sure that's what he meant.

Re: Attempting to get off Ropinirole - again

Posted: Wed Jan 23, 2019 1:12 pm
by QyX
Polar Bear wrote:Yes, thanks for that, Ann and Beth.
That's how I see it, more or less. Do the taper until I can do it no longer. That's when I will visit my gp looking to jump and seeking whatever guns he is willing to give me. That bit seems quite far ahead just yet.

I was surprised at the suggestion to go cold turkey from 3.5mg.
Yes, 4mg is the official max but those 'in the know' which includes Dr B, understand that Ropinerole/Requip should be 1mg max. Hence also surprised that my 3.5 mg Ropinerole was referred to as a moderate dose.


Can't you find a specialist who is willing to prescribe opioids?

Now there is so much good evidence that supports the use of potent opioids for RLS.

I can understand why a GP is reluctant but can't you look for a Neurologists or a pain specialist?

Even though it make take a while to find somebody, I would say it will be worth the effort since opioids are most likely the single most important drug class to treat RLS.

Btw: you could use try adding Diazepam or Clonazepam for a maximum of 2 - 4 weeks to cope with DA withdraw symptoms. Of course you would need a doctor who is willing to prescribe Benzodiazepines but at least for Clonazepam there is reasonable evidence that supports the use for RLS.

Re: Attempting to get off Ropinirole - again

Posted: Wed Jan 23, 2019 3:38 pm
by Polar Bear
Qyx.......I live in Northern Ireland and we do not have an RLS Specialist. My daughter in law is a prescribing nurse practitioner in our main and world wide respected hospital. She is very familiar with my situation and my medical regime, and my wish to come off the ropinerole. She has spoken in this regard with several of the neurologists that she works with on a daily basis and was not impressed. Her words to me were that she just listened to what they had to say/suggest and looked at him/them and thought...... "You really don't know what you're dealing with here". It would be one of these that I would be referred to. Under our NHS system to current waiting list time is over one year.

My gp is generally willing to consider the Mayo documentation that I show him. If he is unable or unwilling to give me sufficient opioid support I will ask for a private referral to a Neurologist with A letter from my gp. A single private appointment is usually available within a few days. This appt would be for the sole purpose of showing neurologist what the Mayo Clinic suggests using and me asking will he prescribe what I need. If he is agreeable then my gp hopefully will have the authority and backing to support me.I

Yes, I can ask for the Clonazepam. I've had this before when trying to find help with sleep.

Thank you for your suggestions.

Re: Attempting to get off Ropinirole - again

Posted: Wed Jan 23, 2019 4:08 pm
by QyX
When you have no tolerance towards opioids and for now only would need them to withdraw from Ropinirol, some weaker opioids who are least in Germany available with a normal prescription like Codeine or better: Dihydrocodeine could do the job, too.

Maybe a 2-3 week supply could do the job ... but then what?

Can't see a Neurologist in another area? To see a specialist I once traveled 700 km, even in Germany.

I learned one thing when dealing with my health crisis: you can't take any chances and sometimes you have to do what it takes find a doctor.

In Germany we have waiting times too ... but not a year ... maximum wait time for a first time appointment with a specialists is normally between 4 to 8 weeks. However there are some doctors who specialized in fields like ADHD where it can be almost impossible to get an appointment when you go to the popular, well known doctors.

But one year to see a Neurologist?

Re: Attempting to get off Ropinirole - again

Posted: Wed Jan 23, 2019 4:34 pm
by Polar Bear
Qyx - absolutely, at least one year to see a Neurologist. There are other lists that are much longer.
This is an extract of a Report dated August 2018 which shows just what crisis we are facing (generally).

The latest performance data shows more than 5,771 (31.9%) trauma & orthopaedics patients and 3,356 (18.6%) general surgery patients were waiting over a year for treatment.
Unlike the rest of the UK, Northern Ireland measures its waiting times in two stages: referral to first outpatient appointment, and then outpatient to inpatient. Therefore, the real wait of many patients will be even longer than the statistics indicate.
Responding to these figures, Mr Mark Taylor, Director for Northern Ireland at the Royal College of Surgeons, said:
“Waiting times in Northern Ireland for inpatient and day case treatment are the worst in the UK. Tens of thousands of patients are waiting more than a year for treatment compared to around 3,500 in England.

This is of course not Neurology but be assured that also with Neurology, what is considered non urgent is way way down the line for appointments.

I am currently using Codeine and Lyrica, and have some way to go up to the Codeine maximum. I'm doing ok at present and will certainly be pressing (armed with my documentation) for stronger support when the time comes. And as previously mentioned, if necessary will make a private Neurology appointment to seek approval for stronger opoiod treatment.

I applaud your perserverance through your own RLS journey, what a wonderful RLS doctor you would be.

Re: Attempting to get off Ropinirole - again

Posted: Thu Jan 24, 2019 1:12 pm
by QyX
You could try and get a prescription for Morphine ... it is available in low doses in basically every country in the world and after Methadone the cheapest high potent opioid available.

Oxycodone and Hydromorphone are 3 to 4 times more expensive compared to Morphine.

So when you have to see a private Doctor, I would ask for Morphine since

a) the Codeine you take is basically a pro drug and gets transformed into Morphine into your liver. So when you tolerate Codeine, you will also tolerate Morphine

b) Morphine is the most sedative of all opioids. As long as I had no Morphine tolerance, it was a super sleep aid without all the side effects all the other drugs have. Unfortunately after 3 months Morphine lost its sedative properties.

c) While Morphine can be stimulating too, most of the time Hydromorphone and especially Oxycodone are way more stimulating.

I was unable to sleep while taking Oxycodone for years. It only worked when I was taking Benzodiazepines or DAs + Antipsychotics ...

Took me many years to develop a tolerance towards the activating effects of Oxycodone.

So Morphine would be my choice. It is still my main opioid, however I take it together with smaller doses of Oxycodone and Hydromorphone to avoid opioid tolerance from happening.

Re: Attempting to get off Ropinirole - again

Posted: Thu Jan 24, 2019 4:59 pm
by Polar Bear
My daughter in law prescribing nurse had explained to me how codeine gets transformed to Morphine, and how the strengths of most opioids is set against the Morphine.

I truly believe (without any basis) that requesting a prescription for Morphine would be like asking for the Queen's Jewels out of the Tower of London. When I once mentioned Methadone, a couple of years ago, the dr's eyes were on stalks and there was some huffing and puffing. However, I will have Mayo Clinic documentation supporting the use of strong opioids for augmentation.

Qyx - I follow your threads with interest, and appreciate that you share your researched knowledge and experience with us.