Appointment with Robin Fackrell

[Faith_Hope_1]

I have an appointment with Dr Robin Fackrell at the beginning of October. I am hoping that he will be able to assist with my restless legs, and with the peripheral neuropathy too. I am having problems with needing more ropinirol to keep the restlessness at a bay. I have had no success with Gabapentin or Pregabalin. I'm hopeful that he may prescribe Buprenorphine - my GP has agreed to prescribe it for me if the request comes from a neurologist. One thing I would like to know is if there are further tests he thinks I need would I be able to get those on the NHS? I am having to pay to see him for this initial appointment but don't have the money to pay for any further treatment privately. Thanks in advance!

[Joolsg]

The only tests for RLS are blood tests, full iron panel, B12. You could get those now from GP ready for Dr Fackrell. Serum ferritin needs to be above 100ųg, preferably 200ųg/L.

Peripheral neuropathy can be confirmed sometimes with nerve conduction tests, but not always.

As you're on Ropinirole, it would appear you are suffering augmentation. EVERYONE will experience it, we just take different times to get there.

You can start reducing Ropinirole now, before you see Dr Fackrell.

Go slowly. Reduce by 0.25mg every 2 weeks and you may need codeine to settle withdrawals at each reduction.

Gabapentinoids do NOT work while Ropinirole is damaging your dopamine receptors. They start to work about a month after your last dose of Ropinirole.

Similarly, you can't ADD Buprenorphine to Ropinirole as the damaged dopamine receptors will continue to break through and scream.

So, you can use Buprenorphine to help you get off Ropinirole completely.

Dr Fackrell is aware of the benefits of Buprenorphine BUT he is still 'wedded' to dopamine agonists. So be firm and insist yoi will not consider any other dopamine agonists as they will quickly cause augmentation as well.

Hopefully Dr Fackrell will start to realise that EVERY RLS patient he has seen over the last 2 years is experiencing severe, increased RLS on Ropinirole, Pramipexole AND Rotigitone patch.

He may decide to join the 'experts' from the USA and try to get them banned.

Good luck.

RLS-UK website has all the research papers (Mayo algorithm) and under 'Useful Resources' there are printable withdrawal sheets for dopamine agonists and an Iron therapy page.

[SueJohnson]

That's great you are going to see him. I can't imagine any other tests you would need.

[Claire_lc]

Hi Faith, I saw Dr Fackrell three months ago. I'd managed to get myself off Ropinirole but had had a miserable year with only Pregabalin, which made very little difference.

I specifically asked for sublingual Buprenorphine. He wanted me to try patches but agreed to tablets. As Jools says, only blood tests are needed, and your GP can arrange these for you via the NHS.

You're lucky if your GP will prescribe Buprenorphine on the advice of a neurologist. Many won't (mine didn't) and I had to register at a surgery an hour from where I live. It was totally worth it though. Buprenorphine has been the magic pill I thought did not exist. On a dose of 0.2mg - 0.3mg, I'm experiencing zero symptoms and sleeping like a normal person again.

Dr Fackrell didn't try to push me back towards DAs thankfully. I think he's learning from the growing number of patients he's seeing for whom DAs have caused untold damage. I think you will come away with the letter you are hoping for, and then your prescriptions will all be on the NHS.

I'm seeing him for a follow up next week and will impress on him how utterly life changing Buprenorphine has been.

Let us know how you get on.

[Marzipana in reply to Claire_lc]

Claire, that is so exiting that the Buprenorphine worked for you! I think the last time we were in contact, you had not yet started it. I see that your dose is smaller than the prescription I got a little over a week ago. Have you not suffered any nausea since you started it? I ended up in ER the day after the first night I took it; I had never experienced nausea/vomiting/weakness like that ever! The only prescription drug I'm using now is .25mg ropinerole 2×week to at least get 2 nights per week of approximately 6 hours of sleep. I hate taking even that small amount, as it was miserable getting off it, but I need some sleep! Most other nights I get 0-3 hours.I hope that the Buprenorphine keeps on doing that mighty good job for you! YAY!

[teakabeagle in reply to Marzipana]

What dose of Bup did youtake? My first dose was a massive 2 mg, and it was the worst nausea vomiting , staggering and nystagmus. Lasted two days without taking anymore Bup, but Ihad no RLS. Went to 1mg. Stil too much. Another two day and went to .5 mg. Had slight nausea, but doable. That faded after a month and now it’s perfect. , no nausea, no RLS. At that level I only need a refill every 4 months and everyone is happy.

[davchar23 in reply to Claire_lc]

Dear Claire,

I understand from your exchange of posts with Marzipana that you, like me, use Buprenorphine to stop RLS but have problems with nausea? I have nausea but mainly it takes the form of hot/cold sweats and mainly in the morning but can be at any time during the day

I am trying to combat this by using two 10mcg/hr BUP patches applied so that I try (not easy) maintain a constant level on the drug in my system and do not exceed the nausea trip-in level.

This means I take on average 0.48mg/day of BUP. i found with the tablets that they mean that the level in my system varied a lot as the tablets immediately release BUP into your system and the level goes over the nausea level.

What form does your nausea take and what level of BUP do you take (patches and/or tablets)?

Best regards

Davchar

[nishimi]

I too had to keep increasing my dosage of Ropinirole, stop now ! Not cold turkey ! The process of getting off this drug is beyond horrible. Please read all the information this site and it's contributors provide. I send you the warmest of thoughts and hope you get the help you need.

[Faith_Hope_1 in reply to nishimi]

Thank you for this reply - I will continue taking the Ropinirole until I have seen Dr Fackrell because I can't bear the restlessness that happens all day long.

[Mulberry100]

I read your post with interest, particularly where you said your GP has agreed to prescribe Buprenorphine if the Neurologist gives the go ahead. Would you mind telling me where you live as I have a neurology appointment at Salisbury hospital on 8th August. Even though I saw a Neurologist in Southampton in November 2022 who stated in a letter to my GP she would prescribe Buprenorphine if I had tried all other meds, which I have done with zero success. However, ahead of my appointment I asked my GP if she would prescribe Buprenorphine and, although she was very sympathetic and said if it was down to her she would, but as it is RED in our area she is not allowed! I am not holding out much hope for when I see the new Neurologist and, coupled with the fact, my GP says she can’t prescribe, I really don’t know where to go next for help. I saw Robin Fackrell many years ago, in fact, it was he who prescribed Neupro patches back in 2017, which worked well until the horrendous augmentation got me! However, I’m thinking he may be my next port of call but wonder at the value of seeing him if I can’t get my GP to prescribe, hence my asking if you are local to me, I live in the BA12 postcode area.

I really do wish you the best of luck and for your appointment with Dr Fackrell and look forward to hearing that that you have started on Buprenorphine, which seems to be, for many of us, our last hope of living with this terrible disease.

[SueJohnson in reply to Mulberry100]

Joolsg has said have your neurologist issue a prescription on a green form & fill it at local chemist if GP won't prescribe it.

[Faith_Hope_1 in reply to Mulberry100]

I live in BH21 postcode area.

[Huntingleroy]

Hi , whatever you do dont let him up your Ropinirole. Despite saying I thought I had augmentation he poo pooed this about 3 yrs ago and put my dose up to 6mgs resulting in hellish withdrawal . Im now finally just on Buprenorphine 0.4 and Gabapentin which has been a life changer. Saw neurologist first privately in Gloucestershire then went on to his Nhs list . He was happy for me to try Bup , only prob is Gp wont prescribe. Have tried every Gp in the area and nearby towns. Neurologist is still prescribing for me but its not easy getting it and quite stressful . Good luck

[Faith_Hope_1 in reply to Huntingleroy]

Thank you for this response. I am trying to keep the level of Ropinirole to 1mg a day - it has risen from 0.5mg when I first started taking it in September 2021. It worked like a charm for some time and now I find I need to take more to keep the restlessness at bay. It has always plagued me throughout the day and night, not just at night as appears to be the case with some people. So pleased to hear that the Buprenorphine is working for you but sorry you're finding it so hard to get a doctor to prescribe it for you.

[Huntingleroy in reply to Faith_Hope_1]

My new gp has finally agreed to prescribe but it was a battle

[DreamerTED]

Honestly, I feel like I am better off the gabapentin than when I was taking up to 1200/day. Went down to 400 for a couple of years and moved over to a naturopathic doctor who suggested gradually getting off of gabapentin. That took 2 months.

I gained a lot of weight on gabapentin and my balance was poor.

[CaraCara]

Hi Faith,

Sorry for the late reply. I did try these medications but they gave me the old "sleepy" side effects so I went off them all. I just take asprin type tablets now and put up with the pain. Medical science is hopeless when it comes to nerve pain so I've given up on other types of tablets which they say helps nerve pain. Hope you succeed in your search for a solution. Kind regards.

[Faith_Hope_1 in reply to CaraCara]

Thank you for this response but I'm not wanting them for nerve pain but for the intolerable restlessness that comes with RLS. I don't know what would happen to me if I had to put up with it without some help - one of my biggest fears is being bedbound and not able to get medication to stop the restlessness.