Appointment with Dr Robin Fackrell

[Faith_Hope_1]

I have an appointment with Dr Fackrell tomorrow morning and am feeling anxious. It's about my RLS and I am hoping that he will allow me to come off Ropinirol and start Buprenorphine. I am having to slowly increase the amount of Ropinirol I take to ease the symptoms. I am now taking 1.25mg a day in four doses. The RLS has now been joined by Radiculopathy; that is causing me a lot of problems with pain, weakness and fatigue and I am currently waiting for a proper diagnosis of the cause having recently had nerve conduction studies and electromyography. I'm awaiting an MRI which will no doubt be a long time coming. I'm totally exhausted with it all and hope that tomorrow I will at least have a positive experience with Dr Fackrell.

[SueJohnson]

No reason to be anxious. He will prescribe buprenorphine. Be sure to tell him to treat according to the Mayo Clinic & not prescribe Neupro.

[Faith_Hope_1 in reply to SueJohnson]

Thank you, Sue - I’m a bit anxious about the whole thing at the moment but I’m trying to deal with it because I know it makes matters worse!

[Joolsg]

Dr Fackrell does prescribe Buprenorphine BUT, like other UK neurologists, still prescribes the Neupro Patch in the mistaken belief it's less likely to cause augmentation.Stand your ground and REFUSE any dopamine agonists.

The Top US experts have now relegated DAs to end of life scenarios. They're too dangerous to prescribe.

Can I just check your dose? 1.25mg in total or 4 x 1.25mg?

[Faith_Hope_1 in reply to Joolsg]

Thanks for that advise, Jools - very useful! My dose is 1.25mg in total - I take 1x 0.25mg at about 6 hourly intervals during the day and 0.5mg at bedtime.

[Gonzo123]

I would be extremely interested in the outcome of your consultation with Dr Fackrell who I saw many years ago. At that time he put me on 6mg Rotigitine Patches, which I am still on. I really am very frightened to come off them because if I miss one accidently all hell let’s loose and I am almost suicidal. I have a replacement knee and a fused ankle as well as severe restless legs. Now I have sciatica and can hardly walk now. I am so depressed about it all.

[Joolsg in reply to Gonzo123]

Oh Gonzo.Dr Fackrell should follow up all patients.

Leaving you on 6mg Rotigitone patch is unacceptable. It is double the maximum dose. Have you experienced Impulse Control Disorder?

Of course you have severe RLS.

6mg Rotigitone will cause horrendous augmentation.

I suggest you print off the RLS-UK withdrawal schedule for Rotigitone and ask your GP to monitor you.

Alternatively, ask Dr Fackrell to prescribe low dose buprenorphine to enable you to withdraw from Rotigitone safely.

I don't know anyone who has been switched to the patch who hasn't experienced severe augmentation.

[Mulberry100]

Please report back. I also saw Dr Fackrell a few years ago when he prescribed Neupro patches, which were great for a couple of years until I augmented big time, which was pure hell! Due to comments on here about him prescribing Buprenorphine I am planning to see him again if my current battle with a Southampton based Neurologist doesn’t get me the opportunity to, at least, trial Buprenorphine. Good luck tomorrow, really hope it goes well for you.

[Laineypl]

Wishing you good luck and a positive outcome. Let us know your outcome

[Huntingleroy]

Hope it went well ? I wished Id stood my ground with him when he poo pooed augmentation . I ended up on 6mgs of Ropinirole .Withdrawal was pure hell . Finally off it and life is good with good old Buprenorphine !

[Munroist]

I saw Dr Fackrell a couple of years ago and found him receptive and helpful although still open to all forms of treatment so as others have said you need to stay confident in what you want and don't want. If you are finding you need to increase the dose of rotigitone then it sounds like you are on the path to augmentation. Radiculopathy and nerve issues are often linked to RLS but that doesn't contradict your plans to move from rotigotine to buprenorphine but it might be exacerbating the RLS.

[Tarsprayer]

Sorry, I am probably a bit late. My experience is that 24 hour slow release Ropinirole is OK. I take 4 mg daily, which generally keeps RLS at bay, although sometimes I have to take a further 2 mg to get relief. I hope you get/got a helpful interview.

[SueJohnson in reply to Tarsprayer]

If you sometimes have to take 2 mg in addition to your 4 mg you are suffering from augmentation and need to get off it as it will only get worse and the longer you are on a DA the more likely that the first line treatments won't work nor will increasing your ferritin . 4 mg is the maximum.

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

You need to switch to the regular ropinirole because the slow releases ones can't be cut.

To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole, Neupro and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

[Tarsprayer in reply to SueJohnson]

Sue, many thanks for your fullsome summary of RLS - you have given much knowledge and advice. However, I can assure you that I get little or no augmentation. I started on Ropinirole when it was first approved for use for RLS sufferers, and was trying to find the correct dosage. It became apparent that augmentation was occurring, and a helpful neurologist suggesting trying the slow release. These worked well and I have remained with Ropinirole. I know it is not regarded as tops, but when I floated this to thee consultant, he said it would be better to stick with when is working. I have twice tried to changeover to Pregablin (on the suggestion of another consultant), but found that the maximum dose was insufficient to fully control the RLS, which is why I have a dispensation to go above the normal max. of 4 mg to 6 mg as required.

I agree about the iron level - I did some years ago go for regular tests, and the results were generally too high - so much so that they set about taking blood from me. This was quickly aborted when I became unconscious and had to be resuscitated.

One certain prediction about RLS is its unpredictability

[SueJohnson in reply to Tarsprayer]

That's horrible about your giving blood.

If you tried to changeover to pregabalin while still on ropinirole it wouldn't work or if you were off ropinirole but didn't let your symptoms settle before starting pregabalin or if you didn't give it 3 weeks. Otherwise your dopamine receptors were damaged from taking ropinirole.

Then your choice to control your RLS would be a low dose opioid like buprenorphine or methadone or you could try dipyridamole.

But YES by definition you are augmenting if you need to go over 4 mg. See Joolsg's answer who is an expert on this. See the Mayo Clinic Algorithm.

[Joolsg in reply to Tarsprayer]

Totally agree with Sue. Classic augmentation. And 6mg extended release Ropinirole will DEFINITELY cause augmentation.

[Huntingleroy]

How was your appt with Dr Fackrell?

[Faith_Hope_1]

An update after the appointment with Dr Fackrell. I hope that it appears in the right place!

The appointment was a very positive experience and he talked me through the different medications for RLS. I had outlined my experience with Ropinirol and the other medications I have tried and their failure to help. He didn't once try to convince me to continue with Ropinirol but agreed that Buprenorphine would be the best thing to try and he is going to write to my GP to request that he prescribe that for me. His directions were for me to begin with 200mcg Buprenorphine at bedtime alongside the Ropinirol and to slowly taper the amount of Ropinirol whilst slowly upping the amount of Buprenorphine to a maximum of 800mcg. It may, of course, work with a lower dose than 800mcg and I'm hopoing that will be the case. He said to decrease the Ropinirol slowly. He said that if I get sickness from the Buprenorphine I could take an amtiemetic whilst my body is getting used to it.

For the Radiculopathy he said that I need to have a brain and spinal MRI in order to find out exactly what is going on.

He was very kind and listened to me despite the fact that there was a loud alarm beeping repeatedly throughout the time I was with him. It was apparently coming from the pump room and it stopped immediately my appointment was over - was it telling me something? 😆 Although it would have been far better had I not had to battle the alarm, years of teaching young people have made it possible for me to deal with background noise so I was able to cope with it.

I am going to see my doctor tomorrow (hopefully). Dr Fackrell can't refer me for an NHS MRI because I saw him privately due to the enormous waiting list for a neurology appointment. However, I can't afford to continue with private treatment so I think I need to now get on to an NHS list.

Does anybody know the answer to the following question? If I have a private MRI scan then will I be able to get treatment on the NHS for any outcome or do I need to wait for an NHS appointment for an MRI?

Thank you so much for your help on this forum, it is very much appreciated.

[SueJohnson in reply to Faith_Hope_1]

That's great that your appointment went well. Sorry about the situation with the MRI.

[Ephemera]

Glad you got a good visit. Our experience is that if you have a private MRI then you need a private consultant for the follow up. You will need a referral from GP for the MRI, our GP would not refer direct for MRI but went through NHS consultant, took forever!!

[Faith_Hope_1 in reply to Ephemera]

Thank you very much for the response. Did you get referred to an NHS Neurologist? My GP said they can’t refer directly for an MRI - I would have to be referred by a consultant. That means I will have to wait for an age to get on the NHS neurologist list. Seems like I have a long wait ahead of me. Does it mean if, say, an MRI done privately found I have Multiple sclerosis that I would forever have to have private treatment for that condition?