How best to manage ?

[Operabab]

Hi guys

Posted about 6mths ago as was going through argumentation on ropinerole and came off it (bad experience ) Dispite reading about not taking any more dorphine antagonist I was persuaded by my dr to go on to mirapexin. I was told that there's nothing else they can offer me ho apart from a patch. Obviously I have now augmented again and am now coming off meds with nothing else in the offering I can only try to manage with diet, already don't take caffeine have cut back on sugar etc.

I am on the waiting list for a neurologist but could be a while. Sleep is awful only managing a few hours a night have sleeping tablets but can't take every night and don't always help a lot

Any advice would be gratefullyreceived. Life gets pretty tough

Thanks

[Hidden]

Oh dear, on your doctor giving you yet another dopamine med. There are other options it you having tried any of them yet, look on rls-uk.org for the list of meds available.

[Operabab in reply to Hidden]

Thank you will take a look. I have been reading this site regularly over thepast few months but Dr insists that only the DA meds are available for them to prescribe anything else has to be done through a neurologist I'm in the UK so don't know if that makes a difference Will have to try again have contacted a private hospital about paying to see one of their neurologist they are going to get back to me Monday with costs

Thank you again for your reply

[Hidden in reply to Operabab]

Hi, i am in the UK and my doctor prescribes Tramadol for me , its used off label, but many doctors in the UK prescribe it for their patients, the DA'a are not the only meds which can be used for RLS, as you have probably seen if you read list on the website i gave you. Your doctor needs to catch up on what can be prescribed for your RLS. Your doctor can refer you to see a neurologist which being in the UK will probably have a looong waiting list.

[Joolsg in reply to Operabab]

I really feel for you. I’m in the UK. A recent post by someone who has moved here from the USA stated that her US doctor had expressed the view UK doctors are in the dark ages where RLS is concerned. Your doctor has confirmed that view!

What a negligent, ignorant GP. You will have to print off everything you can from this website and rls.org in the USA to show that opioids are now the preferred first choice treatment of many RLS experts.

Pregabalin is a good option for RLS and is often prescribed off licence.

You could also email Kings College London- professor Choudhuri and explain you are desperate- you have augmented twice and your GP will only prescribe more poisonous dopamine agonists. They may take pity and send a helpful response which you can show to your GP. Alternatively, if you can afford to go private, you could see someone quickly who will recommend pregabalin or an opioid.

I wish you all the luck in the world persuading your GP.

[Operabab in reply to Joolsg]

Thank you should hear about costs for a consultation with a private neurologist tomorrow and will take it from there. Have been out and brought CBD oil today so fingers crossed for some relief tonight will post how I get on, but so disappointed with GP's reaction.

[LotteM]

Also, additional info in te paper ‘Allaying augmentation’ on other treatments than dopamine agonist. Note that the Neupro patch is also a dopamine agonist. Don’t let yourself be persuaded to try that.

The alternative classes of medicines are alpha2delta ligands like gabapentin and pregabalin. And low dose opioids, such as tramadol and oxycodon. The latter in slow release version together with naloxone is available under the name Targinact and officially licensed for RLS. If augmentation and subsequent withdawal is over, meds usually have to be taken only in the evening.

Also, have your body iron stores by means of ferritin checked. It should not be just normal, but average to high, at least over 100mg/l. See the video by Dr Earley on rls-uk.org for more info on iron and RLS.

[Operabab in reply to LotteM]

Thank you for all the information I'm not sure if being in the UK makes any difference I have another dr appointment Monday so will go armed with all this info and see if he can help but was quite insistant that they could only prescribe the DA meds anything else could only be done through a neurologist I'm have contacted a private hospital about paying to see a neurologist they are going to get back to me Monday about cost etc. Finger crossed can sort something soon running out of energy etc.

Thanks again will post replies

[LotteM in reply to Operabab]

Ho operabab, I am in The Netherlands, thus my experience may differ from those in the UK. My gp prescribes painkillers (codeine, tramadol or oxycodon) if given good and sound info that it is a good medicines for RLS. I know from several orher people on this forum that are from the UK also have a similiarly cooperating gp. You may want to direct your gp to the NICE guidelines. If you google “nice guidelines rls” several relevant pages come up. Read, print or being links for tour gp to read.

And of course the treatment page (and other pages) on the rls-uk.org website. Good luck.

[Operabab in reply to LotteM]

Thank you the nice page makes interesting reading think it would be worth printing and taking to doctors although it does say that the DA meds are the only ones licenced for rls so guess he needs to see the bigger picture

Cheers

[LotteM in reply to Operabab]

This is te page with te report about oxycodone/naloxone (Targinact). In the bottom of the first page it says that this med was licensed in the UK for RLS in 2015. Apparently not all NICE content is updated.

[LotteM in reply to LotteM]

Ph. Forgot to add the link 🤔. Here it is: nice.org.uk/advice/esnm67/r...

[Operabab in reply to LotteM]

Thank you so much will check it out

[Hidden]

See my success with herb gotu kola and magnesium chelate

[Operabab in reply to Hidden]

Thank you will check out online

[Pam34 in reply to Operabab]

I’m in the uk and my doctor has prescribed both Tramadol and Pregabalin. If you can’t get your GP on board maybe try another? We are so behind the times in the UK and it’s us that suffer. Print off all the info you can find as has been suggested and educate yourself as much as possible so you can educate your doctor (in a polite kind of way!)

Pam

[Operabab in reply to Pam34]

Thank you unfortunately some seem to take it personally if you try to suggest things but will now definitely push further armed with loads more information.

[Nottsali]

Hi

My GP was the same, would only prescribe gabapentin once it was recommended by a neurologist. I waited 3 months for an nhs appointment, but could have got an earlier one by keeping checking online for cancellations (any that came up seemed to be when I was on holiday though!). Good luck!

Alison

[Operabab in reply to Nottsali]

Thank you

[Pippins2]

Hi point out that Targinact which contains Oxycodone which is an opiate is licensed for the treatment of severe RLS in the UK. .Good luck x

[Operabab in reply to Pippins2]

Thank you will do

[Higgi73]

If you look on the nhs website it lists all the pills that can be used. Print this off and show it to your gp. It definitly mentions opiates etc. Good luck.