Attempting to get off Ropinirole - again

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stjohnh
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Re: Attempting to get off Ropinirole - again

Postby stjohnh » Tue Oct 08, 2019 2:50 pm

What QyX said.
Blessings,
Holland

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Tue Oct 08, 2019 4:32 pm

Qyx and Holland.... As far as was possible I think Dr understood. While with her I remained standing, doing stretches and walking around her office. I could have been seated but wanted to show how it could be. Indeed I was so frustrated that there were a few tears. She was most sympathetic, put her arm around me..... I said to her that if I got arrested trying to procure an illegal drug I hoped she would come to my side to attest to my distress with no alternative as the health system was letting me down !!

At present she is trying to contact the area senior neurologist. I have a basic medical insurance which also provides 24/7 GP telephone advice and later tonight I hope to ring them and see if they have any names.

I will also ring tomorrow the snr neurologist 's secty and enquire directly if he is familiar with the treatment of augmentation RLS.

As for getting myself admitted to hospital, I'm not at that stage yet. I will try the neurologist s route first.

I will not be waiting the two years .... Actually today's local paper has an article on the local neurological service to say there 19,000 on the waiting list in our small province of N Ireland, some waiting over 3 years.

Definitely not waiting two years. I will be pro active in seeking an RLS specialist and pay to see him.

Going to the cinema tonight to see Judy so just about to double dose my meds plus some Kratom.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

QyX
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Re: Attempting to get off Ropinirole - again

Postby QyX » Wed Oct 09, 2019 10:32 am

Please don't give up and fight for you rights. I can imagine that this is a distressing experience.

I would have told the Dr that putting her arm around me, her empathy is doing nothing to improve your situation. The frustration and tears you experienced, I've experienced them many time myselfs.

Every time I was in such a situation it only made me more mad and energetic to find a doctor who is willing to listen to me and finally do something about the issues at hand.

The german system is so much better. Even in bad circumstances, it normally doesn't take longer than 3 months to get an appointment with a specialist.

This is so grotesque but I guess everything get's even more complicated by living in N. Ireland which doesn't have the services and hospitals of the London area.

Stay strong!

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Wed Oct 09, 2019 11:38 am

Absolutely Qyx. Also it doesn't help.that our (separate) parliament has not sitting for nearly two years and the health service/schools etc are not properly having their grants signed off. I.e. No health minister of education minister or Roads minister or any other minister is officially working and all these departments are in dire straits.... never mind Brexit, but that's all a whole other issue.

I am looking after one of my toddler grandsons today and tomorrow, and have appointments on Friday. just can't get my head cleared of find undisturbed time to tackle this for a few days. Then next week head off on holiday but as soon as possible after that will get into the matter of RLS Neurologist. Our NHS used to be envied but no more and at present appears to be working on a 'urgent death's door policy'.I

GP did say she understood how awful situation this situation is and that she was also frustrated. Says she is doing her best about trying to correspond with consultant. We are losing so many GPs everywhere. They are overwhelmed. My medical practice had 5 last year and only 3 this year.

I am definitely fired up and will be ready to go the Pay it Myself' route after holiday. I will use my codeine as I need it and then onto kratom as necessary when I get home. So disappointed as I understood item my previous GP who left that we would work through this. Had I known how this was going to pan out I'd have been on thisp route much sooner.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

QyX
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Re: Attempting to get off Ropinirole - again

Postby QyX » Wed Oct 09, 2019 1:17 pm

Oh, and I wanted to say: no idea what your GP told you about Codeine but a reasonable maximum daily dosage would be 400 mg in 24 hours, at least that's how it is approved here in Germany. However there is actually quite some leeway with Codeine. The maximum daily dose would depend on how fast your liver can metabolise Codeine into Morphine.

Codeine itself is not a very potent opioid. It needs to be metabolised in the liver from Codeine into Morphine to become effective. If you take higher doses of Codeine than your liver can handle, you won't further increase the effect like you would when taking Morphine directly but you will experience a common opioid side effect: itching ... it is the itching as a side effect that in the end limits the abuse potential of Codeine.

So not knowing how your Codeine deal with your D looks like I would at least ask here to check regulations and prescribe as much as she is allowed to.

She also should have the option to prescribe Dihydrocodeine (DHC). DHC is twice as potent as Codeine but still doesn't require a classic narcotics prescription. As long as Kratom is still effective for you, your opioid tolerance is still quite low.

So if used in the right way and doses, Codeine and DHC could be highly effective treatment options when used the right way and in high enough doses.

I can understand here unwillingness to prescribe Oxycodone but I don't believe here that there is nothing she could do. Basically every doctor is trained to handle and prescribe opioids because they are just so fundamental for medicine.

It is surely a difficult decision to put her under pressure like this but I would just research all the opioid prescribing guidelines for GPs and show her the room she theoretically would have to prescribe opioids. And with RLS there is also option to make some argument for pain.

You already got her invested and she really seems to be willing to help. I hope she would have a hard time refusing when you show her the options she still has. I wonder what she would do with a cancer patient having tumor pain who would require potent opioids.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Wed Oct 09, 2019 6:46 pm

Qyx - regarding a cancer patient requiring potent opioids I think their prescribing would be done at Consultant level and probably advised/approved to the GP.

I didn't know that DHC was twice the strength of Codeine.

I am presently on Codeine Phosphate 15mg x 14 pills daily.= 210mg. daily. Nothing like the 400mg you mention.
She told me max is 60mg x 4 times daily is absolute max.
She prescribes me 400 pills every 28 days thus there is an extra 8. (14 pills x 28 days = 392 pills)

At the moment I'm actually coping quite well (if we leave sleep out of the equation). My visit to dr was to try and future proof for the final steps off the Ropinerole and the few weeks after that. And of course for my two 4.5 hour flights. If it gets horribly difficult at the final steps I will present myself as an urgent patient at the GP morning clinic which runs for urgent cases only. Non urgent appointments have a 4 week wait.

For my flights I will take what I need to hopefully give me comfort. If it leaves me short on Codeine before my next prescription.... well let's hope that with use of Kratom I will stretch them out a bit.
(I do have a stash of Cocodamol 10/500 but don't like taking all that paracaetamol to get the codeine dose I would require. My sister was prescribed them but they upset her stomach too much)

I'm now dropping the occasional Codeine 15mg and only taking 3 pills where I'd normally take 4. Also by replacing the occasional 30mg codeine dose with 2 grams Kratom, and so I hope to have extra for the flights etc.

Thank you.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Attempting to get off Ropinirole - again

Postby ViewsAskew » Wed Oct 09, 2019 6:59 pm

So much work so many countries need to do to fix the healthcare systems. Wishing I were in a Star Trek movie about now.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Wed Oct 09, 2019 7:22 pm

Ann - Live long, and prosper :)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Wed Oct 09, 2019 7:26 pm

Qyx - I've had a look on line and everything I find states that Codeine max daily should be 240mg.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

oceanwalker
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Re: Attempting to get off Ropinirole - again

Postby oceanwalker » Wed Oct 09, 2019 7:42 pm

Wishing all the best !

Sincerely,
Ocean (Marie)

oceanwalker
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Re: Attempting to get off Ropinirole - again

Postby oceanwalker » Wed Oct 09, 2019 7:53 pm

All I have to say today is WoW Thank You... You are all AMAZING....Views, Badnights, QyX,Polar Bear, St.John,Rust and EVERYONE!
Thank you BadNights for all the info on Kratom
ALL the BEST to all for now and to ALL A Good Night :)
OceanWalker (Marie)

Polar Bear
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Re: Attempting to get off Ropinirole - again

Postby Polar Bear » Wed Oct 09, 2019 10:59 pm

Oceanwalker..... Thank you for your acknowledgements. If We all share our experiences we can hope that we learn from each other. Time and again I am blown away by the support shown when needed.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

QyX
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Location: Berlin / Germany

Re: Attempting to get off Ropinirole - again

Postby QyX » Thu Oct 10, 2019 3:25 am

Polar Bear wrote:Qyx - I've had a look on line and everything I find states that Codeine max daily should be 240mg.


I had that number from prescribing information for doctors for a Codeine XR preparation. I tried to find it again but was unable to.

In medical practice, every person has its own limit when the horrible itching all over the skin starts. Because of that DHC would be a better choice, giving you more space than Codeine.

But when you are already at 210 mg Codeine, switching to DHC would be for sure more beneficial than increasing the dose.

Here in Germany Dr are allowed to go over the maximum daily approved dose. This is than considered "off-label use".

I am happy to here that you are able to cope, at least for the moment. And you are right about the Cocodamol. I would always avoid paracetamol when possible, too.

So the way I see it: the most realistic option I can see you squeezing out of your Dr would be indeed DHC.

Icantsleep
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Re: Attempting to get off Ropinirole - again

Postby Icantsleep » Thu Oct 10, 2019 5:20 am

stjohnh wrote:What QyX said.


THIS !

Love his attitude

I was told 6 months wait earlier this week for a neurologist after my sleep doctor lost his integrity when things started to getting rough .

I was on a "semi-urgent" waitlist
They were nice enough to inform me this status could be upgraded to "urgent" if they received a letter from the referring doctor

I went back to my family doctor today and said that's what I need to happen

Apparently he will resubmit the referral as urgent tomorrow

Dont suffer any more than you need to !

Stand up for yourself and let's stand up for each other !

As he said, there's a loophole somewhere that will get you the treatment you need and deserve in a more timely and respectful manner !

debbluebird
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Re: Attempting to get off Ropinirole - again

Postby debbluebird » Thu Oct 10, 2019 7:42 am

It seems to me that health care in all of our countries needs to change. I went to the ER a few years ago when my Pulmonary/sleep Doctor wanted me to try to go without methadone. They replaced it with mirapex and gabapentin. It didn't work. I was only getting 2 hours of sleep. Needless to say I was a mess. The ER sent me to a psych hospital for the weekend. It was a Friday. That hospital did nothing for me. Gave me a muscle relaxant that only increased my RLS and leg spasms. They didn't even check on me. The nurses didn't leave the nurses station. I walked the halls all weekend. It was a waste of time and money.
It seems like the Doctors don't believe us that we are getting so little sleep.


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