RLS Targinact and SW Based Neurologist

[Preservatory]

HELP!! Just changed GP practices and went for a new patient appointment this afternoon. Explained I had RLS, was originally on Ropinirole, but discontinued in 2017 due to augmentation. At the time I had a very receptive and understanding GP who agreed to prescribe Targinact 15mg. Been on it ever since and it's been a life saver. Fast forward to this afternoon and new GP refused flat out to prescribe it, without offering an alternative. I was completely side swiped and walked out feeling completely shell shocked.

Can anyone recommend a Neurologist who will prescribe Targinact for RLS, preferably in the South West (based in Devon). I am now trying to re-register with my original GP practice, but want to be armed with a specialist's letter just in case I encounter problems again!

[Joolsg]

nice.org.uk/advice/esnm67/c...

I think today is 'Negligent and Difficult' doctor day.

Targinact is licensed for secondary treatment in UK. GP is refusing to follow NICE guidance.

I suggest you consult Switalskis law firm.

They are currently very interested in bringing a negligence case against UK GPs for refusing to treat RLS patients properly. Particularly if GP doesn't follow NICE guidance.

[e-mail]

A GP refusing to fill a prescription for a med that works and that you've been taking for years will have to explain IN Detail why.

If he thinks it will cause addiction - refer him to NICE guidance and Dr Winkelman's opioid study.

And either change GP surgery asap or take legal action.

If you need to see a specialist- try Dr Robin Fackrell at Bath ( not too far away). There are very few knowledgeable specialists

[Preservatory in reply to Joolsg]

Thanks so much Joolsg! Have to say I was so surprised at his reaction I didn't know what to do or say. I feel absolutely sick to my stomach at the thought of being refused access to Targinact, particularly as it's worked for me for nearly 8 years!

I have already started the registration process at my old GP practice and will hopefully get to speak to the original prescribing GP asap. I will also get in touch with Switalskis and Dr Fackrell.

You never fail to be a fountain of knowledge! I am normally lurking in the background, reading posts and keeping abreast of up to date info.

[Joolsg in reply to Preservatory]

Today has been a VERY bad day.There are only around 3 doctors in the whole UK who I think know more than the basics.

But even one or two of those have disappointed me recently!

How can any 'expert' not know about DAWS or depression associated with DA withdrawal???

And UK neurologists are STILL insisting on prescribing Neupro. There isn't a single person on this site who switched to Neupro and DIDN'T experience augmentation again very quickly. So why do they keep telling patients it doesn't cause augmentation at low dose? It does.

I get so frustrated.

We need a taskforce of 4 or 6 UK specialists to spend 2 months working alongside Dr Berkowski or Dr Winkelman in the USA so they can learn from experienced specialists.

Meanwhile every day in the UK, hundreds of unwitting patients are starting Ropinirole/Pramipexole etc. And within 5 years half of them will he augmented. And the cycle of gambling/suffering/ignorance continues.

Utterly scandalous.

[Onion01 in reply to Joolsg]

I remember 2 years ago my Neurologist said that he had never heard of a problem with long term use of pramipexole and even cancelled a future apmt with a Neurologist at the hsp who specialised in RLS saying that to have two Neurologists was proposterous. ( His specialism was for Epilepsy) When I insisted that I see a RLS doctor all he talked about was my Epilepsy and my out of control eating was no way linked to Pramipexole but, my reaction to stress . The situation in the UK is an absolute disgrace. The only Neurologist that I have ever trusted , with any semblance of knowledge, was Dr Nick Silver at Walton Neuro Hsp in UK. He was amazing.

[Joolsg in reply to Onion01]

It really is a national scandal.Overeating is the most common ICD caused by Pramipexole and Ropinirole.

Sadly, RLS falls under Neurology.

And many neurologists have a 'god complex'.

I've spent 31 years seeing neurologists twice yearly ( because of my MS) and I can honestly say that many are incredibly arrogant and refuse to LISTEN.

But we have to keep challenging them

Particularly with regards to RLS where the majority are so behind in their knowledge and research.

[Shad0w2 in reply to Joolsg]

I recently had a Dr’s appointment to discuss my vitamin D deficiency which was discovered when I had a recent iron blood test. My iron levels were OK ( in accordance with the Mayo Clinic recommendations) The Dr. seemed to have a reasonable knowledge of RLS, he was aware that there can be distressing side effects associated with the various RLS medications and said that increasing my vitamin D, together with magnesium might help.

He agreed with me that taking medication should be a last resort but he declined my offer to give him photocopies of the RLS-UK and Mayo clinic advice on the grounds that he most likely had all that information.

I have since looked at my on-line medical records and was stunned to see that he is suggesting Ropinirole or Pramipexole as a possible next step.

There is no chance that I will take either of these but I would prefer that it is not recorded in my records.

[Joolsg in reply to Shad0w2]

Utterly depressing.The NHS info on RLS has dopamine agonists as first line medication. The NICE cks guidance has DAs and gabapentinoids as joint first line meds.

Only DAs are licensed in UK for RLS so most GPs will prescribe them and will argue they are following NHS rules. Gabapentinoids are 'off licence' and Targinact is licensed for secondary treatment when DAs have failed. Which is inevitable!

This is why it's essential to get new NICE guidelines- as opposed to 'guidance' .

But my only concern is there aren't any knowledgeable 'experts' in the UK to advise on NICE guidelines.

Aaagghhh

[Shad0w2 in reply to Joolsg]

Thank you Joolsg

That most likely explains why the Dr. was fairly dismissive when I mentioned the Mayo Clinic. About two years ago I had a phone consultation with another Dr. in the practice, she mentioned Gabapentin so I will ask to see her if the need arises.

[SueJohnson in reply to Shad0w2]

And of course he had all that information.

[Shad0w2 in reply to SueJohnson]

Thank you for your comment Sue, it was obvious that he had other patients with RLS and he seemed to be reasonably knowledgable, I now realise that his knowledge is purely based on the NHS guidelines. If he did already have the information that I offered him, he seemed to dismiss it on the grounds that it came from the Mayo Clinic.

[SueJohnson in reply to Joolsg]

My laugh for the day "today is 'Negligent and Difficult' doctor day." 🤣🤣🤣

[Joolsg in reply to SueJohnson]

Wouldn't it be wonderful if we had 'Good Doctor' days more often?

[SueJohnson in reply to Joolsg]

Sure would!😀

[Preservatory in reply to Joolsg]

Booked in to see Dr Fackrell next Thursday (taken the hit 💰)…will provide an update after the appointment. I was sifting through my paperwork this morning and realised I actually saw Dr Fackrell 10 years ago….on the NHS then…waitlist is 6mths now😣

[Joolsg in reply to Preservatory]

Fingers crossed for you.

[Preservatory]

Perhaps a group negligence case is the way forward in order to force 'the powers that be' to sit up and actually listen to sufferers! You're right, it is utterly scandalous.

I'm still reeling about the GP's reaction today! I explained to him that I had suffered augmentation on DAs and did not want to revisit them. All he talked about was titrating off Targinact with no suggestion as to what the alternatives would be. I didn't feel listened too at all. I've had a brilliant experience on Targinact so don't know what the issue is. I was wholly unprepared for his viewpoint so wasn't prepared with evidence. Lesson learnt...always go armed with as much information as you can access!

[Joolsg in reply to Preservatory]

Indeed. Knowledge is power. Many GPs have opioid bias. They were taught ALL cause addiction and tolerance. But that's not true and you have proved that!Maybe he will change his view when advised that Targinact is licensed? So no chance of him losing his GP licence.

He may also change mind when he reads thd Massachusetts Opioid study.

We have to educate them. One at a time.