Which CCG's are prescribing Targinact?

[susiehandley]

3 years ago my consultant at Papworth suggested Targinact but Cambridgeshire CCG would not allow it to be prescribed. I've just moved to Wiltshire and was wondering if anyone has been able to get Targinact down here??

[Gizzmo14]

Hi. I was on Targinact for years fir something else then few years ago I was stopped 8nto Oxycodone. When I asked why I was told that it can now only be prescribed direct from hospital as it is known as a black drug. They said the Oxycodone is the same and I did not notice any difference. I'm also in the UK, in Sirrey. Hope this helps ☺❤ xx

[susiehandley in reply to Gizzmo14]

Thank you,

[rls-insomniac]

I think it depends on where you live. My GP was happy to prescribe Targinact for my RLS although I no longer take it.

[susiehandley in reply to rls-insomniac]

Why don’t you take Targinact any more?

[rls-insomniac in reply to susiehandley]

When I was weaning off ropinirole, I was suffering horrendous withdrawal symptoms (I was taking 8/9mg of this evil drug). My GP prescribed Targinact to help me with the symptoms. Once I'd weaned myself off, I carried on with Targinact, as well as a couple of other meds. Unfortunately, I was still having a terrible time. After writing a begging letter to my consultant, he agreed to let me try Temgesic (buprenorphine). It has been a life saver to me.

[Nettles68]

I think you may struggle to get Targinact prescribed, you would be better off asking for plain oxycodone.

I am having an atrocious time with augmentation on Ropinirole, also now trying to withdraw.

I had been prescribed 25mg oxycodone to help with withdrawal which was working well initially but since dropping my last half tablet my symptoms are through the roof!

Because of this I wrote to my local hospital neurology dept asking if they would consider prescribing Targinact for me at a higher dose to help me through withdrawal, because it is licensed in the UK for severe RLS that has failed on D/As.

Sadly they have refused and suggested Pregabalin...

I have seen a paper online dated 2017 entitled 'NHS England Board Paper. Items which should not be routinely prescribed in primary care' and Targinact is on the list.

The paper explains the reasons for reluctance to prescribe.

In the meantime thankfully I have at last found a compassionate caring GP at my local practice who has agreed to take me under her care, up my dose of oxycodone to help me withdraw from Ropinirole and then go forward with future treatment. She seems genuinely moved by what I have been through over the past 6 months and wants to help.

Yesterday I received a call from Neurology inviting me for an emergency appointment today. I am going to ask if I can stay on oxycodone long term at a lower dose once off Ropinirole.

I hope they will see the sense of my reasoning.

I've had bouts of major depression on and off over the years and I don't think Pregabalin is a good option for me!

I am armed with research papers etc and hope for a good outcome.

My augmentation is very severe unfortunately for me!

So again I would say you have more chance of being prescribed straight oxycodone than Targinact.

I really hope you get the help you need.

[Nettles68 in reply to Nettles68]

P.S I will report back with how things go for me today!

Take care 😊

[Joolsg in reply to Nettles68]

Fingers crossed🤞 Dr. Buchfuhrer has reported that many of us with severe augmentation and withdrawal issues do not respond to pregabalin. I was one of them. I really wish the medical profession in the UK would learn about RLS and that certain drugs just don't work for people with severe RLS. I always show my neurologist and GP the opioid study by Dr. Winkelman in Massachussetts.Let us know what happens.

[Nettles68 in reply to Joolsg]

Hi Jools

A good result for me today.

I saw a young, enthusiastic, friendly neurologist.

Absolutely no idea about augmentation, I honestly don't think she believes in it!

No chance of an iron infusion absolutely out of the question.

When I mentioned the forum and the advice I've received from here and Dr Buchfuhrer in the states she very slightly bristled but composed herself again.

She initially suggested upping my dose of Ropinirole which I refused and then encouraged me to try pramipexole. She said if I felt no benefit after 2 weeks I could try something else.

I explained to her that after the trauma of failing one DA I was in no hurry to try another and then another etc...

I asked her why I couldn't just stay on oxycodone as I'm already on it? At an appropriate dose to help me withdraw from ropinirole and then onwards at a lower dose indefinitely.

She agreed! 😃

Not only that but she said I can go as high as 60mg if needed! I almost fell off my chair!

She very kindly apologised for the months of suffering I've had to endure.

I'm so relieved! No more begging and pleading for extra tablets to help me through this nightmare.

I hope so much that I will do well on this through withdrawal and for years to come and that it gives hope to others who are looking for relief!

[Joolsg in reply to Nettles68]

Brilliant news about the oxycodone, worrying news about her ignorance of augmentation. It's in the medications leaflets and takes 2 seconds to find it on Google. Gawd it really will be an uphill battle to educate the GPs and neurologists. Sigh. Fingers crossed it gets you safely through withdrawal and helps thereafter

[Nettles68 in reply to Joolsg]

Thankyou Jools 😊

[Joolsg in reply to Nettles68]

PS on the iron infusion- I wrote directly to the haematology department at St George's in Tooting with a copy of the study showing the incredible results for the vast majority. They agreed and gave me the infusion. Ferritin rose to 785! Sadly, I'm in the bottom 20% for whom raising iron doesn't help. I'm away at the moment and not sure I can find the link to the study but will send on Sunday.Dr Elizabeth Rhodes at St. George's was brilliant.

[Nettles68 in reply to Joolsg]

Ok thanks for that Jools,

I assumed I would have to be referred by a GP or neurologist, didn't realise I could just write directly to a hospital department like that.

Food for thought thankyou 🤔

[susiehandley in reply to Nettles68]

Good for you, I cycled through those tablets, and more, twice before finding out about augmentation. I’ve moved a few times in the past decade and a previous GP was keen for me to talk to a group of trainee doctors about RLS because my knowledge was greater than even his at the time.

[susiehandley in reply to Joolsg]

This is really interesting because I suffered augmentation on the entire cycle of DA’s twice round! Pregabalin was prescribed in 2016 after I fell asleep whilst driving but again it only worked briefly. Then earlier this year I was given a vibrating pad to use before bedtime but this just made my legs go crazy. However, I do now use it when every other remedy, including spraying my legs with Deep Heat, has failed to work, and on a couple of occasions it has worked when I’ve set it to 20 minutes - and taken a sleeping pill! But these make me depressed. I also managed to get my last GP to prescribe MST because I did find that after being given morphine when I broke my leg, it really helped the RLS too!

I am beginning to think my arthritis is aggravating the RLS because the summer months are not usually this severe.

So I really do need to find a solution.!

[susiehandley in reply to Nettles68]

Thank you so much for your detailed response. I have a triage appointment with my new GP next week so I will ask about oxycodone. My only concern is that I’m already on lacido and senokot for constipation and can’t take codeine.Also I take extra iron but my serum ferritin levels are about 75 so probably not high enough so I’ll ask about that too.

I went to bed earlier last night because my legs hadn’t started jumping, I quickly fell fast asleep but woke up 2 hrs later and my legs were still jumping when I got up at 8 am! So I’ve now been awake for 19 hours and still 2 hrs to bed time!

[Nettles68 in reply to susiehandley]

Hi Susie,

It sounds like you have been through the mill and still it continues!

If you believe you would be a suitable candidate for oxycodone go ahead and try.

Explain to your GP how over the years you have tried all of the usual RLS meds but that they have failed you sooner or later.

Suggest giving oxycodone a try.

Explain to your GP how many others here in the UK and worldwide are having success with low doses of oxycodone with little or no increase of dose over the years.

Explain how exhausted you are from lack of sleep, how you don't expect complete eradication of your symptoms but just to have a good quality of life!

Take along a copy of the paper 'The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Syndrome.'

This paper is excellent for showing the safety of opioids when used for refractory RLS and is an Internationally recognised and respected paper among RLS experts.

I really hope you get some much needed respite soon.

Long term lack of sleep is devastating enough without the added distress of severe RLS symptoms on top!

As I mentioned earlier I am going through severe augmentation on Ropinirole and withdrawal.

Since dropping my last dose my symptoms have been horrendous with virtually no sleep and distressing symptoms.

After seeing the neurologist yesterday my dose has been increased.

Last night I took 30mg oxycodone instead of 25mg before bed and the difference was amazing! I slept for 7hrs briefly waking in the night to go to the toilet. Previously I had been getting 2/3hrs max broken sleep.

As I understand it you are not going through augmentation so likely would need an even smaller dose to give you a decent night's sleep!

The neurologist I saw could not understand the reluctance there had been by my local practice to give me oxycodone!

I've had to fight tooth and nail for every mg all the while suffering unbearable symptoms, it has been exhausting and traumatic.

I'll be thinking of you Susie.

Please let us know how it goes for you 😊

[susiehandley in reply to Nettles68]

Thank you so very much this information is such a moral boost. I do however believe I have reached augmentation with pregabalin so I don’t know how that will affect the dose. Therefore, I will look up the paper.

[Nettles68 in reply to susiehandley]

Hi Susie,

I'm not sure about the Pregabalin, I haven't taken it as it hasn't been a good option for me due to its depression /suicide ideation risk.

I know there are forum members who have taken oxycodone and pregabalin together but I can't advise on dose, sorry.

If you type pregabalin into the search box and filter down posts to just the RLS forum you will no doubt find valuable information and advice, experiences of others.

Again I really do hope you get the help you clearly need when you meet your new GP next week. Keep us posted please 😊

[Joolsg]

Would they consider plain Oxycontin? Targinact is far more expensive as it contains Naloxone to prevent absorption in parts of the gut, thus preventing constipation. Oxycontin works well for many and you can take magnesium citrate to counter any constipation.Hope you can get Oxycontin.