Nhs neurology app advice

[Monamiem]

Hi everyone.

Once again I want to thank you all so much for your advice regarding RLS and buprenorphine.

I won't go over our journey so far, but to cut a long story short. My husband was on DA for many years until the dreaded augmentation.

We had the past year fighting for the buprenorphine patch. After a long battle his GP reluctantly agreed to prescribe. It's been magic ever since. It's a miracle drug really.

But the thing is, whilst all this was happening, a nhs neurology app was made, and after about 1.5 years, it's finally come through.

Now we've chatted about it and we think it's a good idea to get a neurologist to also agree with the GP about his buprenorphine. As that'll reassure them that it's OK to continue to prescribe.

But due to previous experience, the neurology app is sending my anxiety into a panic. We're expecting a fight and for the neurologist to say use DA (which is not happening).

We've tried every single medicine before this, so its not like we've started at buphrenorphine. Plus he's been on it for a while now and apart from some irritated skin the rls has been at bay.

I know no one here will have the answer, and im posting due to my own anxiety, but has anyone actually managed to get a good nhs neurologist? (Hosp is derby royal)

Or does anyone have any words of support ?

I know i don't have rls, but I've seen the struggle he went through and the idea of them taking it away is just too much.

Again sorry for the rambling anxiety post!

[SueJohnson]

Zenawarrior73 lives in Derby and I know she wasn't happy with the neurologist she saw so you might want to message her to see if it is the one he will be seeing.

[Monamiem in reply to SueJohnson]

Thanks Sue ill send a DM 😀

[Joolsg]

Totally understand your anxiety.We all know how appalling most UK neurologists are where RLS is concerned.

But to give you some reassurance- start completing the IRLSS score chart and keep a sleep diary so you can prove to the neurologist how effective Buprenorphine has been. Show the chart and diary.

Explain that many UK patients have had similar miraculous results from Buprenorphine.

Guys Hospital are going to be doing a study on Buprenorphine shortly.

Take along recent articles about dopamine agonists from UK media (all available on RLS-UK Facebook and Instagram pages).

Also- there will be more media coverage on the dangers of dopamine agonists next week. BBC South is doing a TV news piece and will be putting it on their social media.

Take a copy of the Mayo Clinic Algorithm and the new AASM guidance and the Massachussetts Hospital opioid study whjch is proving opioids do NOT cause addiction or tolerance for RLS.

And Explain that RLS-UK website follows the USA and does NOT support dopamine agonists because of the inevitable augmentation and the high risk of ICD.

And, if you haven't done so already, report augmentation via Yellow Card Scheme.

bnf.nice.org.uk/medicines-g...

Reporting the scale of augmentation is the ONLY way we can stop doctors prescribing dopamine agonists.

Go with your partner, with a list of your points, and help argue his case.

And - you will know a lot more about RLS than the neurologist! So be proud of that and be confident.

You may be pleasantly surprised- hopefully the neurologist will listen to you both.

Good luck.

[Monamiem in reply to Joolsg]

Thanks Joolsg your advice is great 👍 I can't believe we have to fight so much with the so called specialists.

I just hope they don't take away the prescription, as he really can't live without it.

[Joolsg in reply to Monamiem]

Legal action will be required if that is suggested. I can give you names of 2 law firms that are aware of RLS and the medical ignorance.

[Tcakeeater]

I have suffered, and I mean suffered with RLS for 50 years. Have seen neurologist a few times. Last time was 2004. Could or would, still only offer me the same medication that I have taken all these years.

Pramipexole or Ropinerole. But, adding Zapain, codeine Phosphate /paracetamol works for me. Specialist said cary on if it works.

I don't need the Zapain throughout the day as I keep busy. But, once I relax in the evening!!

They really kick off. I find that the codeine really helps especially for sleeping.

[Monamiem in reply to Tcakeeater]

Thanks. I'm sorry the RLS has been rough and the neurologist was not useful. I'm fully expecting them to be bad, I just don't want them to take away the buprenorphine he already has a prescription for.

Maybe it's worth cancelling?

[Islay9]

I totally understand your concerns. As Jools says go well armed with all the information printed out and in you and your partners mind too.

Going in with a positive, confident but polite attitude will help. I was very nervous and ended up being pleasantly surprised.

Mine still mentioned DA’s but he could see from my notes I had refused them previously as there was no more discussion about them.

He also took a copy of my medication list and the severity scale and the RLS monitor (both from the RLS-UK website) this was also really helpful when I went back 6 months later to show changes.

So again like Jools said, taking a before and after one will be a great indicator (use memory to fill in and just say you had filled them in at the time).

Just did a quick google:

Engage in shared decision-making, know your rights:

Understand your rights as a patient, including the right to ask questions, receive information, and participate in decisions about your care.

[Monamiem in reply to Islay9]

Hi Islay. Thanks for your message. That's good to hear. That's a good idea to bring a copy of the medication and the RLS before and after scale. That way they can't argue with data can they? That's very true, we'll keep that in mind. Thanks again 😊

[Islay9 in reply to Monamiem]

Hey, please check out Jools latest post about a positive change in NICE guidelines for you to take to the neurologist!

[Zenawarrior73]

hi Monamiem

I saw Dr Nijam via the NHS at Leicester Royal and he was useless and tried to push ropinerole on me but thankfully my Gp had already put me on buprenorphine due to both restless legs cramp fasiculation and benign muscle fasiculations and an ongoing hip problem.

I did see Professor Evangelou privately at the park hospital Nottm in spring last year who started me on Pregabalin but I couldn’t tolerate it so buprenorphine came out of the blue as a suggestion from my GP

It may help if your hubby does have other pain for example me with my hip meant I met the threshold for an opioid. Dihydocodeine was helping but not covering the symptoms and pain completely. My GP dr Anwari at Quorn medical centre is amazing.

Downloaded all the info that Sue, Jools, amrob, merny and mad legs recommend as these wonderful humans allowed me to be armed for every appt. If you read my previous posts you will see my history

The bup patch has helped a lot it doesn’t cover the hideous cramps I get as a result of the constant muscle twitching but it deffo has helped the RLS and made my hip pain manageable.

When I saw the useless Dr Nijam I had to educate him on augmentation and impulse control disorder and told him I’m shocked he felt fobbing patients off with a drug that could ruin their life was good patient care.

I’m due to move to Derby in the next 4 months and my GP is writing a cover letter for my new GP to ensure I’m not taken off buprenorphine.

I’m unaware of the neurology team at Derby but Professor Evangelou privately was willing to listen to all the stuff I’d printed off from Sue and didn’t once try to push ropinerole although he did suggest Duloxetine an SSRI before settling on pregabalin.

A lot of neurologists aren’t up to date but if you calmly state the facts around DA’s and refuse them and if the BUp is working it would be unethical and poor patient care to remove a drug that is working

Good luck

[Monamiem in reply to Zenawarrior73]

Hi ZenaWarrior! Thanks for your detailed message. I had a look back and saw that you'd have quite the journey. It looks like we're in a similar position. Our GP eventually prescribed buprenorphine, and as the nhs neurologist app came through I thought it would be good to get the meds basically confirmed by a neurologist. But maybe this is not a good thing to do?

We're a little apprehensive about taking prints of paper as from experience many doctors just roll their eyes as you've used "doctor google".

However, he's actually exhausted all meds for restless legs. He's tried all DAs, just to prove to the GP more than anything that he wasn't lying and they wouldn't work (well we knew that). Sleeping tablets. Gabapentin. Everything. When it comes to RLS meds, buprenorphine is the only one left.

And it's just really stressful to think that we'll go see this neurologist who will say he shouldn't be taking it. He does also have chronic pain and fibromyalgia, which the patch also does help. So maybe they'll be ok with it.

It's just too stressful to think about if I'm honest, and he needs them to be able to work. We're self employed so don't qualify for sick pay. So maybe this will also work in our favour?

Again I know I'm catastrophising but atm it's a steess we could do without.

Thanks again for your message!

[Bugsycat]

hi, I’ve also been on the same journey as your husband but I had a neurology appointment with Dr Lennox who was absolutely brilliant and knew all there was to know about RLS. Especially after last year when I saw a neurologist who didn’t know a thing, I had to tell him.

He went through all my meds, asking me to come off one then prescribed buprenorphine. I now put on my first patch tomorrow and I hope it does for me what it did for your hubby

[JunieBJones in reply to Bugsycat]

I'm curious as to what dosage is the buprenorphine patch. I started 3 weeks ago at 10mcg and since increased to 15mcg which is close to covering the RLS and other chronic pain. Did the dr prescribe anything for possible breakthrough pain? I was on oxycodone 5mg IR, 3-4 times per day, prior to the patch, but am now down to 1 or none per day. It's a work in progress. Best wishes to you on your journey.

[Bugsycat in reply to JunieBJones]

Hi I’m on the 20mg patch. Like you I was on oxycodone 3-4 times daily but now on patch plus gabapentin for neuropathy but does 2 purposes I suppose. When settled on patch I have yo finally come off ropinarole, only .25mg to go. Talk about a juggling match