Best private RLS consultant(s) in U.K.?

[Virginic]

If my husband, 75 yo and having suffered ever-worsening idiopathic RLS for more than 40 years, were to decide to consult a doctor in the UK, who would you recommend? I’m thinking someone who is really, truly on board with the most up to date, effective, long-term treatments?

[SueJohnson]

I live in the US so don't have any recommendations for you but there are others that will. When he sees his doctor have him ask for a full iron panel. He should stop taking any iron supplements 48 hours before the test, fast after midnight and have his test in the morning as that is when his ferritin is lowest. When he gets the results, he should ask for his ferritin and transferrin saturation numbers. He wants his ferritin to be over 100. Improving it to that helps 60% of RLS patients. If his ferritin is less than 75 then he should take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. He should take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If he has problems with constipation switch to iron bisglycinate. If his ferritin is between 75 and 100 or if his transferrin saturation is below 20, he probably needs an iron infusion since iron isn't absorbed as well above 75. If he takes magnesium he should take it at least 2 hours apart since it interferes with the absorption of iron. He shouldn't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise one's ferritin. He should ask for a new blood test after 8 weeks if he has an iron infusion or after 3 months if he is taking iron tablets. Above all he should not let his doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead have him prescribe gabapentin. Beginning dose is usually 300 mg gabapentin or 100 mg if he is over the age of 65. It will take 3 weeks to be fully effective. After that he should increase it by 100 mg every couple of days until he finds the dose that works for him. Take it 1-2 hours before bedtime. If he needs more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If he takes magnesium he shouldn't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you and him everything you want to know including about its treatment and refer his doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at

Https://mayoclinicproceedings.org/a...

[Virginic in reply to SueJohnson]

Many thanks Sue! Very helpful as always. He hasn’t got to the consulting stage yet, but it may not be too far off. I’ve been following your comments (and those of one or two other experienced experts) on this site for a long time and I know you know what you’re talking about.

[Joolsg]

At the moment, Prof. Walker at Queen Square, London seems to be the best neurologist. He'll do phone consultations and transfer you back to the NHS for prescriptions.He listens, accepts the link with low brain iron and will prescribe low dose opioids, including Buprenorphine.

He does sometimes suggest the Neupro/Rotigitone patch so if you've been on Pramipexole or Ropinirole, stand your ground and refuse to consider another dopamine agonist and refer him to the Mayo algorithm.

Hopefully, UK neurologists will soon accept that these drugs are bad news.

Good luck.

[Virginic in reply to Joolsg]

Thank you so much!

[Joolsg in reply to Virginic]

Dr Bagery at the Barberry Sleep Clinic in Birmingham is someone else who prescribes low dose opioids BUT like other UK doctors is unaware of all the meds that make RLS worse, like sedating anti histamines and anti depressants. So he has in the past prescribed these to try to increase sleep. As they trigger RLS, they worsen sleep and the disease.It does seem that whoever we see, we still have to know all about the disease first.

Hopefully one day there will be a Centre of Excellence for RLS in the UK where the doctors are fully up to date with treatments and are carrying out research.

[Virginic in reply to Joolsg]

Yes, the opioids might be helpful, though with his IBS, constipation could be a problem. He takes Zolpidem (every three nights or so, so as not to get too dependent on them) and knows not to take the drowsing antihists etc.

[Virginic in reply to Joolsg]

…and yes indeed, RLS specialist centre would be most welcome!

[TobyTobias1 in reply to Joolsg]

Hello, how can I get info about the Mayo algorithm please?I am 71 years old and was diagnosed with RLS in about 2004 but had it for many years previous. My GP had just been telling me not to drink caffeine, no late night Tv etc etc. I gave up asking for help until I was truly desperate. I was prescribed Ropinerole which I thought was amazing , I had no support or follow ups from either GP or Neurologist NNUH. They just kept increasing dosage and issuing repeat prescriptions until I was taking 4mg daily. Eventually I discovered this site and like others on hear with RLS feel I have learnt and understood so much more than those that should! I ended up asking to go on a slow release Ropinerole ( forget what it’s called) 4mg was sending me crazy with compulsive behaviour issues, I went back to GP who just said ‘try to reduce the dose a bit ’!

I eventually got to see a Neurolgist again after doing lots sleep cooking, eating and driving and shopping in the early hours of the morning, I felt totally out of control and my legs were too! I was then put on the Neupro patch ( I had to suggest it) but it kept falling off or didn’t last long enough, so I was put back on Ropinerole , and soon up to 4mg again. Right back to where I started.

I recently managed to get down to 2mg. Since COVID restrictions lifted I got to speak to GP , I asked to be re referred to Neurologist to have my medication changed but he refused saying ‘things are different now’ he then referred to a letter from previous Neurologist ( 5 years previous!) and pinged a prescription across to Pharmacy for Pregabalin, with how to take it but he had not discussed how to take it while trying to reduce Ropinerole. Tried to speak to GP again but didn’t receive a call back. I was mortified that he was prepared to send a prescription for me to take with discussing how it might affect me etc. seemed totally irresponsible. I have not taken the Pregabalin and have got down to 1.75mg daily of Ropinerole.

My legs start early in the day and cannot sit and rest in evenings . If I manage to get a reasonable rest at night usually 4-5 hours, then I don’t tend to wake up with RLS , but any less sleep and I wake to my legs and arms going. I am also addicted to Zopiclone after taking it for about 8 years.

Any advice please?

Sorry Jools for this long rant, I wanted to introduce myself on the website saying all this but couldn’t work out how to do it. as I am not very IT literate. But thought

you might be a good person to send to as I read most of your posts and did read Manerva’s but not seen any for a long time.

Thanks for taking the time to read this. Not sure where to go from here but def want to get of Ropinerole !!

[SueJohnson in reply to TobyTobias1]

Here is the link to 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

Https://mayoclinicproceedings.org/a... Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You will suffer and may need a low dose opioid temporarily to help out with the symptoms. But in the long run, you will be glad you did. On the pregabalin, beginning dose is usually 25 mg. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 25 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. Most of the side effects of pregabalin 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. According to the Mayo Clinic Updated Algorithm on RLS: Most RLS patients require 200 to 300 mg of pregabalin daily. If you take magnesium take it at least 3 hours before taking as it may interfere with the absorption of the pregabalin.

[LotteM]

What about Bedith's neurologist? He seems pretty helpful. Bedith, what do you think?

[bedith6 in reply to LotteM]

I saw Dr Bagary at the Barberry Sleep clinic Initially he was keen for me to try Clonazapam but when I told him it wasn’t working for me he quickly agreed to Temgesic. I find he is very willing to listen and willing to admit he doesn’t know everything. He is doing all he can at the moment to enable me to sleep better

[Virginic in reply to bedith6]

Thank you!

[LotteM in reply to bedith6]

Sounds good Bedith. Finally for you. I know you struggled for so long, and at least now there is someone willing to listen and able to do something. Does dr Bagary know about the updated algorithm of last year in the Mayo Clinic Proceedings?

[landdebbie]

Thanks for the info ,I didn't realise the heat feeling in my legs was due to RLS.Mine is very mild at the moment so I've been able to come off the meds it's the pain more than the restlessness that keeps me awake. That I wonder if I have RLS I'm on iron tablets for next 3 months to see if that helps.