So I had a private consultation with Prof Walker last month.
I used to take 0.25g ropinorol some time back and went up to 0.5g and felt that I was augmenting so came off it. Managed for some time without medication but over lockdown/menopause the RLS became much worse so I went onto Gapapentin.
Although by no means a silver bullet, I still was up a few times during the night, it became managable. I was taking 1800mg split into 3 doses over 6 hours.
However just recently following an extended business trip abroad it was off the scale.
The result of my consultation was as a first line approach to switch to Pregabalin which I have done. Some nights are better than others but I'm not sure in summary that it is any better than the Gapapentin. I only take 150g but when I tried to take an extra 75g, I felt really drugged up the next day.
So the next line that he recommended was DA's up to 2mg which really surprised me. If I needed to go above 2mg, to take Clonazepam.
If I then was experiencing augmentation, to withdraw from the DA's and then consider opioid medication.
Meanwhile I'm taking oral iron as my ferritin level is low at 49 ng/ml with a view to getting an iron infusion if it is not up to 100 ng/ml in 3 months time.
I just wonder do I just go with it and trust him to get some sleep??? 🙄
As always, would welcome any views, especially on the DA's x
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Hi, I'm in a similar position. Doc also prescribed for up to 4mg pramipexole (as suggested by my sleep specialist, before trying methadone as a last resort). I thought of alternating 10 days on, 10 off (using cannabis - thc on those off days). I've become hesitant to try DA as I'm scared of augmentation. I only geget RL in my legs. I've tried pregabalin, clonazepam, codeine, which didn't help. Seems I have refractory RL even though I've never been on DA'S before. The RL is lifelong but only at night (very rarely in the daytime). But, like you, Believer, I don't know if I should go ahead with DA to finally get some night time peace. Sorry I'm no help to you but I hope someone else will have useful advise. Cx
I'm shocked to be honest. RLS-UK is trying to get DAs relegated to LAST line treatment when every other possibility has failed. Just read Buggabear post on these awful drugs.
Refuse. 4mg Pramipexole is 8 times max dose.DAs are not first line treatment among experts.
Mayo Clinic Algorithm makes clear that raising serum ferritin by iron pills or infusions should be first line treatment. Then review and replace meds that worsen/trigger RLS ( anti depressants, anti histamines etc).
If that doesn't work, pregabalin and gabapentin are the next meds.
If pregabalin didn't work, what dose and what times did you take it?
Iron may help but if pregabalin at the right dose and time ( taken for 3 weeks) didn't help, then opioids would be the next med to try.
I like Prof. Walker. However, I absolutely disagree with him on DAs.He has previously expressed the view that Ropinirole up to 2mg is safe and doesn't cause augmentation. We know from many posts on here that that is incorrect.
You know it yourself.
Dr Earley is a top RLS expert and sees thousands of RLS patients every year. He is in a much better position to see exactly how many patients augment.
He categorically states that EVERYONE WILL experience augmentation at some point.
Hold your ground. Trust your instincts.
Refuse another DA.
Your next step should be iron supplements/infusions and if that doesn't helo, a low dose, long life opioid.
I suggest you express your concerns in writing, ask for another consultation and ask for opioids.
Thank Joolsg - I think I may have shot myself in the foot on this one. The letter is getting sent to my GP who have wanted to prescribed DA's in the past so this will be more ammunition for them as they are very reluctant to prescribe opioids. It's so difficult getting back in contact with him - in fact it's taken me a month to get the clinical report from his secretary. The only thing I can think of is writing to him asking him if he will revise the recommendation but he may not want to do this!
Have you had recent full panel, morning, fasting blood tests, to include serum ferritin?If your serum ferritin is below 200, you could ask Prof. Walker to arrange an iron infusion.
It is a ticking time bomb.
GPs keep prescribing these awful drugs and fail to help patients when augmentation starts.
I suspect your RLS will improve DRAMATICALLY after the iron infusion and then you won't need to even consider taking DAs.Go for it. I know 3 people personally who are now RLS free after iron infusions & they're also med free.
I'm not clear, Jools, as to whether iron infusions, if they work, have to be regularly repeated, like say, every 6 months. Can you help me understand this? Thanks!
Repeat infusions as necessary. Try not to get your ferritin too much above 300. And or take iron supplement every night. If it takes an infusion every 6/12 or every 6 yrs then that is what it takes.
Often one infusion is all that is needed. But experts do mention that RLS patients seem unable to store enough iron in the brain, where it is needed. Prof. Walker did say that iron infusions can be given directly into the CNS via a lumbar puncture/spinal tap. That is highly unlikely to happen in the UK!
Iron infusions can be repeated every 6 months but again, finding someone who understands the benefits of infusions for RLS will be the main stumbling block.
Some people respond brilliantly to just one infusion, others need regular top ups. Every 6 or 12 months.Kakally has top ups if her serum ferritin falls below 300, as that is the level that stops her severe RLS.Prof. Walker discussed iron infusion directly into the Central Nervous System via a lumbar puncture to the spinal cord, but I doubt any hospital in the UK would agree as the time and expense wouldn't be allowed on the NHS.
I went with Prof Walker too and I've been disappointed tbh. He's a lovely man but its almost as if he's holding on for dear life with the older way of prescribing medications. He was mildly irritated with me for asking about LDN and stated he didn't understand why I was asking. He also stated he didn't understand why I would want to try some of the other treatments like the one you're on Jools. He seemed flabbergasted and asked me where I was 'hung up' on the idea and 'where I was getting my information from'. He wasn't rude at all though.
At this point I'm thinking of going private, I have no more money to spend and I will be in debt but there's very little else I can do. I need sleep.
(This is less directed at you Jools and more of 'flow' or 'add-on' to the general line of conversation in case anyone is interested in another perspective. And, if anyone wants to message me, they're free to. I do take ages to reply though so hold tight!)
I totally understand your comments.I recommended Prof. Walker originally because he helped 2 or 3 members going through DA augmentation and prescribed Buprenorphine for them. He will also prescribe iron infusions.
One of the patients on Buprenorphine developed teeth issues, and suddenly, he stopped prescribing Buprenorphine, saying it ruined teeth.
Then another member on here reported he had said he prescribes 2mg of Ropinirole as it doesn't cause augmentation at that low dose.
To say I was disappointed is an understatement.
He does believe in the link to low brain iron, but he does still seem to be stuck in the past where dopamine agonists are concerned.
In the UK, it really is desperate.
Hardly anyone believes or is aware of the scale of augmentation and suffering.
Pregabalin and gabapentin and iron infusions do not work for so many of us.
Opioids and LDN and dipyridamole then become our only options.
I just wish there were a few doctors willing to learn.
Dr Jose Thomas is now the ONLY doctor left in the UK who does seem to be totally up to date. He follows the Mayo algorithm and the top US experts.
My Dear - you've been nothing but a guiding force for ALL of us! I'm so pleased you did make the recommendation otherwise I would have been stuck back where I was, being told there's nothing wrong with Tramadol, etc. With Prof Walker's help, I'm better now than I was!
But-but-but, I couldn't agree with you anymore - he's being a weeeee bit stubborn imho. I won't go on a rant about it because I'll probably type something I regret later on!
I think for me, personally, I'm going to look to move consultants if I can but only if/when it's necessary. For now, I'm good. I could be better but I have a few other things going on atm that require my undivided attention. I'll also be looking to include LDN in my treatment plan. So, using it during the day and not the evening, to see if it has any impact. Whatever the results I'll be coming back here to let everyone know.
Hey Believer - it's Low Dose Naltrexone. There's very little research about it but some patients have found relief from their RLS with its use. You'd need a prescription and you'd need to disclose what (if any) other medications you're taking along with health history.
At a low dose it's believed to work on the Mu Opioid receptors and reduce overall inflammation body wide. There are likely other mechanisms at play.
Hi Happy Green Bean 👋 this is the first I've heard of LDN, have you had any luck in getting it prescribed? It sounds really useful, especially as my husband suffers with Fibromyalgia (which people have used it for)
Go back on the gabapentin. the pregabalin you are taking is half the equivalent of the gabapentin you were on. And as you said you don't want to take more. It is possible that the business trip was the problem with making your RLS worse. Or have you changed anything else as DesertOasis suggested or even your diet or an OTC supplement? If that is not the case and you still have problems with your RLS after being back on the gabapentin, I would ask for an opioid.
I agree with Joolsg. Get an iron infusion. In the meantime take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every day at the same time so it is at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. Ferrous sulfate for most people does not cause constipation but iron bisglycinate is much less likely to. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. 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.
Do not take any DAs. The problem with clonazepam is it has a long half life of 40 hours so is likely to make you sleepy the next day.
Thanks but Gabapentin wasn't working. The business trip certainly threw everything out and I came back with a tooth infection which didn’t help. Even before though with the Gabapentin I was still up 3-4.times per night drinking hot drinks.and doing crosswords! I'm taking oral iron to get my iron levels up and will certainly push for an iron infusion if that doesn't work. Seems like.the consultation with Prof Walker was a bit of a waste of money and even worse, has put me in a more difficult position with my gp surgery!
If you have a bit of money, not sure exactly how much, contact Dr. Andrew Klein at Papeorth Hospital, Cambridge for I-v infusion. He does hundreds of them for people with anemia, heart failure and preoperatively, as well as patients with RLS
That's the next step if the pregabablin didn’t work (the consultation was one month ago and Ive only just got the report- however I switched to Pregabalin immediately. I was very surprised!
Hello Believer. Last month I had a telephone consultation with my consultant. I was on DA’s for 12 years then I augmented. I was then advised to change to the Neupro patch as this would be kinder. Of course, once again I augmented. It was horrendous coming off this drug. He was aware that I can’t take Gaberpentin or Pregabalin as both, in high doses give me severe itching and rashes. I was given 300 mg of Gaberpentin and 2.25 to 5.00mg of Oxycodone. This usually gives me just over an hours sleep before the pain and RL sensations kick in. I reported this to him and was astonished to be told that I should retry DAs. I politely told him that I had heard that DA’s are not recommended any more and he laughed and said that only a tiny majority or people react badly to them. His next recommendation for me is that I keep increasing the Opioid, up to 10 mg until I find the level that gives me a bit more rest. When I find this level he will prescribe this dose as a slow release patch. He will see me in three months to see how I get on. I am terrified of the opioid and still just take 2.5 mg and I cannot bring myself to increase the dose. I found this last consultation to be astonishing.
So much conflicting information from the 'professionals'. I know nothing about opioids or what the side effects are but I would try anything to get consistent good nights sleep 🙂
2.5 mg of oxycodone is below the usual starting dose. 10 mg is on the low end of the effective dose per the Mayo Clinic Updated Algorithm on RLS Https://mayoclinicproceedings.org/a... which is 30 mg. It needs to be taken every 4 to 6 hours or you will get mini withdrawals. There is no reason to be afraid of opioids. The low doses prescribed for RLS do not carry a risk of addiction unless you have an addiction personality.
Thank you Sue for your reply. That is really reassuring. No, I don’t have an addictive nature so I will start to up the dosage. It still worries me though as going up is easy but coming off would be horrendous. I am so grateful for this site and especially for the sharing of your expertise. X
What he did say was that I can supplement what I am taking with Ropinirole BUT to be aware of augmentation and to stop it if that starts.
Ropinirole DID cause augmentation last year. I have been through Gabapentin (didn't work), Pregabalin (ditto). I am now on 10mg Oxycodone (opioid) and 150mg Pregabalin daily. I still get RLS when I get into bed, but once I get over that first hour or so, I sleep very well.
But when it goes into overdrive, which it often does, I DO supplement it with 0.125mg Ropinirole (a tiny dosage but it does do the trick) - just making sure that I don't make this a habit.
So again, with me, Professor Walker DID say that I could still take Ropinirole (and I think it was up to 2mg) as a supplement, BUT he made sure that I was to keep an eye on augmentation and that it was only to be used as a "supplement", not a front line drug.
I do absolutely think you should e-mail both him and his secretary and ask if he can put you on opioids - and keep e-mailing him until you get a response. He will probably put you, like me, on 5mg Longtec (long release Oxycodone) plus 150mg Pregabalin to start. I found that 5mg was not strong enough, so I e-mailed him back to see if he would increase it to 10mg, which he did by sending an e-mail letter to my GP.
Good luck. This is a crappy affliction to have, and so little understood by GPs and the general public.
This is really interesting as I've been badgering his secretary for the past month to get the clinical report and I've only just got it. With me I already knew about the risks of augmenting with DA's so I'd aready brought it up. He just said that previously I'd been on such a low level and most people would need over this level anyway in order for it to be effective. He said if I was augmenting over 2mg, he would withdraw me from it and would recommend an opioid. I'm like you, if I get really desperate, I take 0.25g ropinerol just to get one nights good sleep. Would you be able to let me have his e-mail address as I don't have much success with just contacting his secretary? 🙂🙂
Yes of course .... 'WALKER, Matthew (UNIVERSITY COLLEGE LONDON HOSPITALS NHS FOUNDATION TRUST)'
And yes, he said the same to me ... over 2mg and augmentation would be a problem. But nothing wrong in taking 0.125mg (or in your case 0.25mg).
My problem is that I don't believe that anything BUT dopamine agonists actually work with RLS.
I fully understand that opioids work as pain-relieving medicines on your brain cells ... but RLS is caused by lack or imbalance of dopamine, and only dopamine agonists help against that.
Sue ... Jools ... would welcome you expert thoughts as always. x
I augmented on Ropinrol and didn’t have success with gabapentin. Other drugs litterly drugged me out. I’m allergic to opioids. I turned to CBD and it works 85% of the time as long as I can get to sleep. My new neurologist said that is great if it works and the safest alternative. He gave me Tramadol 50mg to take with the CBD and it seems to help with getting to sleep. Good luck.
Didn’t like using CBD oil as it was hard to calculate dosage and I hated the taste. I found Lazarus Naturals online and they have CBD capsules. Anytime you take CBD or THC you need to start out with a low dose. Slowly work your way up to an amount that works for you, relieves the RL and stay with that amount. I have been using CBD for about 3 yrs now. The dose that is working the best for me is a 50mg oil capsule along with a 35mg capsul that they sell for sleep. This combination works 85% of the time as long as I get to sleep right away. If I have trouble I will take a 10-15 mg THC gummy.
Since you are trying oral iron supplements - do also introduce a probiotic called LP299v. It can enhance iron absorption. Jarrow brand is good and it is also contained in the brand Good Belly.
I am interested in your statement that an infusion is a big step. I tried to understand what the negatives of an infusion were because I had a problem finding a doctor who would prescribe one for me. Eventually no-one could tell me anything other than silly comments such as "any subcutaneous injection is a risk" This was just before the time when Governments were demanding we all had injections of an almost untested vaccine in order to save the world.
Hospitals provide infusions on an almost production line basis every day. If there is no danger for a person who is anemic then what is the big risk for a person with RLS. By now thousands of people with RLS have had an infusion to relieve the symptoms. Is there any statistics that show a serious downside to this that is worse than RLS? I would expect that more people die from RLS than from an infusion.
I understand that this is a risk that should be mitigated by performing the infusion in a hospital that is equipped to handle an instance of anaphylactic shock. I don't know any statistics about the recovery rate of patients with anaphylactic shock. I wouldn't get it done in the local surgery although apparently many people do. I have seen a figure of 1 per 250000 applications.
I looked up the risk before having my iron infusion. It was far LOWER than my monthly infusions of my MS drug Tysabri.Statistically, the NEW iron infusions are far safer than the older formulations used in the 70s and 80s.
However, everyone should be aware that there is a 0.1% risk of death and others may experience anaphylaxis.
When I have my MS drug infusions, IV steroids and anti histamines are given first to reduce the risk of anaphylaxis.
I decided the risk was worth taking and had the iron infusion in hospital. It went well, no adverse reaction.
hello I would just say that increasing pregabalin by 75 mg is far too much - it needs to be increased by 25 mg at a time and then only increased again when the increased side effects have calmed down. Maybe a slightly higher dose done more gently would help you - especially if your ferritin was up.
I think fir most of us very little helps us completely and it’s just getting the best balance - which is not good to say the least.
Interesting reading these posts. Can I just say that I have iron infusions every 3 months to combat the anaemia that is caused by severe nose bleeds. Never have any of the infusions helped my RLS even when I know my Ferritin has increased to 200 plus!!GPs seem to get very techy when you go behind their backs with private appointments and even more so when the GP is proved wrong!
if your iron is low then the infusion could be the game changer. Plus if it does work you at least know the cause, which is always a plus. I wish you all the luck in the world, I know how debilitating it is.
What doctor who was also a person I did business for so I know him very well told
I write this script you get it filled but DONT take it ! Come back with list of horrendous side effects that’s how you get to an opioid and his backside is covered in an audit
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