At last I managed to see a neurologist in Sheffield hospital. Wonders do happen 😊 He only asked what my legs felt like for RLS diagnosis and did not examine me at all. Just asked if I responded to Pramipexole in the past.
I walked out with a prescription of Pregabalin 25 mg to take for 14 days, should this not be enough I have been given tablets of 50 mg for the next 14 days.
In future I am supposed to work with my GP to increase dose until my symptoms are gone.
Hope this will work. Any thoughts?
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Moonwalker1967
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That's great !!! Be aware it takes 3 weeks for it to be fully effective and the usual starting dose is 75 mg so don't be surprised if it doesn't immediately help. According to the Mayo Clinic Updated Algorithm on RLS, most patients require 200 to 300 mg.
Sue, I am lucky and they are already working on 25 mg. Yipppeeeee, 7 hours sleep last night Will I experience augmentation Pregabalin as well? Really scared now. Ideally can take those for years to come and no problems with RLS and PLMD anymore. Please advise.
That's great!. Often during the 1st year you have to increase the dose but since it works at 25 mg, you won't have to increase it very much. No augmentation from pregabalin except in very rare cases.
Mixed views. Excellent that he prescribed pregabalin but frustrating that he is starting on such a low dose with no instructions to increase more quickly. As pregabalin takes 3 weeks to be fully effective for RLS, you really want to get to an effective dose of around 150mg at night within 2 weeks and then, if that doesn't help, you can increase by 25mg up to 300mg, assessing the effects with each increase.So you will quickly use up the prescription. Make an appointment now to see your GP & discuss and use the NHS CKS guidelines which show starting dose of 75mg & a max dose of 450mg.
Start at 75mg and add 25mg every other night until you reach 150mg. Stay at 150mg for 3 weeks so you see the full effects and if it doesn't help, you can add 25mg a night.
as far as I remember 25mg is starting dose for folk with late stage chronic kidney disease but I assume that doesn’t apply as a renal specialist would be supervising the dose & maximum level
At least he admitted he knew little about it.It is really scary that even most UK neurologists know so little about RLS and that he didn't research the dose. It takes 2 seconds to search by putting RLS/pregabalin/dose/UK and the NICE CKS guidelines come up.
They really need to attend a teaching/training course run by Dr. Buchfuhrer or Dr. Winkelman.
Let's hope your GP reads the NICE dose guidance & prescribes the right amount.
Hahaha, unbelievable... Jools. Yes, very scary, that he didn't know the dose and I have actually seen a professor called Oliver Bandmann. He specialises in Parkinson's. He just said, it's only RLS and PLMD. At least it's nothing serious 😅.
Medical gaslighting at its finest. I personally would have had difficulty restraining myself if he'd said that to me!I have Multiple Sclerosis and would assure him that RLS is far more serious than MS!!
They really have no idea how devastating and torturous this disease can be. They need educating in the basic principles.
Although, I have told him I RLS so badly that I wanted to jump out of the window to get some sleep. My kids were small then and I was struggling badly No sleep and 2 toddlers. By the way both my kids have now got PLMD, RLS and ADHD. He must have not taken me seriously. I was also very bad trying to get off the Pramipexole I have taken for years. Never again! Oh boy! Such punishment!!!
My feeling is that it is necessary for the Association of British Neurologists (ABN , who write the neurology educational curriculum ) to create a document called something like…. ’The BARE BONES’ of RESTLESS LEGS SYNDROME handout’, which should be given at the 1st consultation with a doctor, usually the GP.
Bare Bones RLS Document
1. Doctor should give empathy and a compassionate attitude and very focussed history taking  ,  leading to :-
2. consideration of differential diagnostic red flags , separate from or possibly associated with RLS.
3. Assess the degree of severity - mild, moderate or severeÂ
4. Mod/severe subjects ,arrange for a blood test , (general parameters , fbc, CRP, blood glucose TFTs) plus an ‘iron’ panel. Fasting iron, TIBC or transferrin, ferritin and TSAT as a percentageÂ
5. Suggest patients fill out/keep a record of the IRLSSG Rating scale  , at least all mod/severe subjects for 4-6 weeksÂ
6. Give all mild/mod/severe subjects the ‘Bare Bones RLS’ handout written by ABN?? with all of the above points plus signposting to RLS-U.K. and other useful latest research. They can take it home , stick it on their fridge door and read and study it over the coming weeks  , probably when they are stamping around at 2am, unable to sleep!
7. Give follow up appointment for 4-6 weeks for moderate/severe subjects to check their rating scale results, discuss their blood test results and discuss their treatment optionsÂ
8. For mod/severe most should have intravenous iron (see attached presentation pages 5-8 inclusive).
9. For those with mild disease, they should still receive the handout and be told to make another appointment if the condition worsens (+ possible blood test etc. if possibly anaemic or other diagnoses).
10. For moderate or severely affected patients— discuss treatment options - intravenous iron, alpha 2 delta ligands , opioids , methadone and only if absolutely necessary………………  After logical , careful treatments by and failure of them, and probable referral to secondary care or incredibly careful monitoring of the possibility of development of augmentation)……………way down the order, Dopamine agonists !            ———————————This ‘handout’ or similar, should be the basic ‘Bare Bones’ of RLS education and used in medical school , in GP training, for junior neurologists and obviously for patients and caregivers and interested relatives and general public. EVERYONE SHOULD KNOW WHAT IS EXPECTED FROM THE FIRST CONSULTATION WITH MEDICAL PERSONNEL. It will not complete the whole personal plan but (i) they feel listened to and (ii) they can see that they are at least on the way to caring and compassionate help with their Restless Legs Syndrome —————————————
I’ve recently been to the Brain Centre at Bristol. The neurologist prescribed Sinemet ( Carbidopa and Levodopa) and offered me an iron infusion if they don’t work. I’ve tried most meds for RLS over the last 30 years, but haven’t tried these. The neurologist I see always has a plan, before I see him. He was the first to check my ferritin levels! I live in Cornwall, but my GP was happy to refer me back to Bristol. It’s worth the train fare to get good advice! You can choose a hospital, just like you can for operations.
Please, please, please do not take carbodopa/levodopa.If you've tried most meds you will have been on Dopamine Agonists and your RLS will have become severe.
Read this article by Dr. Winkelman, a world expert.
L evodopa has the highest rate of augmentation and will quickly worsen your RLS. The neurologist clearly is not an expert in RLS. The only thing he's got right is the iron BUT that should be tried BEFORE meds.
Please read the Mayo Algorithm as well. Sinemet , levodepa are no longer prescribed by top experts as first line treatment. If you start the levodopa, you will experience a worsening of your RLS quickly. No point having iron infusions at that point because your D1 dopamine receptors will be so over excited they will be screaming for dopamine and the iron won't help much.
I see you were on Pramipexole at some point and had a heart attack which they thought was caused by Pramipexole. Then you were on clonazepam and codeine but doctors wanted to reduce the clonazepam.
Levodopa will cause severe RLS, lack of sleep and that causes heart issues.
I really, really think this neurologist is going to cause more problems for you and I totally disagree with him.
Professor Walker at Queen Sq is one of the better neurologists and will see patients privately by phone.
Would you consider a second opinion because I am really worried you've been prescribed a medication very similar to Pramipexole and that it will worsen your your RLS and exacerbate any heart issues.
If clonazepam and codeine were working, why would doctors mess with the dose???
I do feel that I don’t have much choice now. The neurologist discussed the side effects. He thinks that Clonazepam is not doing anything for me now and has told me to gradually decrease the dose and stop taking it. I saw him as clonazepam and codeine were no longer working and the RLS was worse than ever. He talked about augmentation and told me to stop taking sinemet if I had any symptoms like I did with pramipexole. He was happy with my ferritin levels, which increase with every blood test. Thank you for the link to the article. I will read it and discuss it with the neurologist.
He's just not up to date.Has a neurologist ever discussed low dose opioids other than Codeine which is the least effective of all?
You've failed dopamine agonists and the Alpha2Delta ligands so an iron infusion should be considered before he prescribed Sinemet.
Sinemet results in augmentation VERY quickly which is why it is now only prescribed for occasional, one off use for people who get RLS maybe once a month.
He needs to read the Mayo Algorithm and accept his knowledge is not up to date.
Low dose opioids like Targinact or Buprenorphine would be much more appropriate in your case and as you responded to codeine initiallty would probably be highly effective. Opioids at low dose rarely lead to addiction unless there's a history of abuse. Tolerance is also rare and most people in Dr. Winkelman's opioid study have remained on the same low dose for years.
I would really delay starting Levodopa until you have researched further and obtained a second opinion. I can't bear the thought of you suffering 24/7 severe all over RLS and then having to go through a brutal withdrawal. Did the neurologist agree to help you through withdrawal if it happens quickly?
There are a few decent neurologists. Prof. Walker is good and would definitely not prescribe Sinemet.
However, I can only inform you of the risks. You don't have to follow his advice. My neurologist prescribed Amitriptyline which made my RLS 1000% worse and I quickly realised he knew nothing about the disease.
Hi,about 10 years ago I saw a Movement Disorder Consultant at Sheffield Halllamshire Hospital is that where you went .The doctor was useless wanted to move me up to 10mg Neupro patch ..His name began with a G was that who you saw?
I saw professor Oliver Bandmann, who specialises in Parkinson's. Not very compassionate. I have just started on meds. See how I get on. He didn't even do a neurological examination. I had to wait 6 months for the appointment. Crazy!
Gabapentin and Lyrica work, but the idea (for me, at least) is to go off all medication. The low glutamine diet seems to help....and...high doses of Advil, 800mg, also help , im looking forward to being off all prescription meds. I have an apt with a dr at the mayo clinic on the 17 of this month. Will see.
I see you are suggesting high doses of Advil at 800 mg. This is not a drug which it is good to take too often or at high dosage as it can cause bleeding from the stomach. Perhaps occasionally for some people but not really a good idea at that high level. Hope your diet continues to work.
Just a quick update. I have managed to get 7 hours sleep on Pregabalin 25 mg. Lucky me Unbelievable, like winning the lottery!!! However, I am now concerned about augmentation. Will I get that on Pregabalin as well. Super scared!
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Will I experience augmentation Pregabalin as well? Really scared now. Ideally can take those for years to come and no problems with RLS and PLMD anymore. Please advise. 
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