Medication help: Hi, all I have been on... - Restless Legs Syn...

Restless Legs Syndrome

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Medication help

Jamhulio
Jamhulio

Hi, all I have been on Gabapentin 900mg for RLS for a few months now. I was referred to Neurology as I asked for Codeine for breakthrough symptoms and was turned down and more or less called a junkie!!! My GP today has received a letter from Neurology for me to try some new medication while I wait for my appointment. They have recommended trying long acting Ropinirole XL or Rotigotine patch, along with Prebablin 25mg-600mg. My questions are do either Ropinirole XL or Rotigotine patch have less chance of augmentation than the other dopamine meds (Pramipexole) as I'm thinking of trying them alongside my Gabapentin. The other question is should I change from Gabapentin to Pregabalin. I'm worried about weight gain so does anyone have any advice on whether weight gain is likely to be more on Pregabalin than Gabapentin

24 Replies

I'm not a doctor so can't advise you what medicines you take.

However I can tell you that international RLS organisations do NOT recommend any dopamine agonist as a first treatment for RLS. That is pramipexole, ropinirole or rotigotine.

This is because of the high risk of augmentation. Although rotigotine (the patch) is least likely to cause it, they ALL do cause it.

See this link

pubmed.ncbi.nlm.nih.gov/274...

900mg gabapentin is an average minimum effective dose for gabapentin. If it's not working to your satisfaction then it can be increased. The maximum dose is 2700mg.

See this link

cks.nice.org.uk/topics/rest...

In practice, since the "bio-availability" of gabapentin gets poorer as the dose gets larger, if you need more than 1200mg gabapentin, even 900mg then it's better to switch to pregabalin. 150mg of pregabalin would be equivalent to 900mg gabepentin.

I can't say that weight gain is any more or less of a problem with pregabalin than gabapentin, but note the dose of pregabalin is lower.

Codeine can be prescribed for RLS despite the neurologist saying no. However, it's not ideal because of its side effects and because it's not that effective for RLS.

Quite a few members of this forum have now reported that their doctors have been willing to prescribe temgesic for RLS. This is low dose buprenorphine, an opioid. You could collect information supporting this from this site and try approaching your GP about it.

I'm afraid that it sounds as if you GP and the neurologist are examples of the many who have little expertise in dealing with RLS. i.e. they're ignorant.

One of them should have at least carried out blood tests for iron deficiency. This should be the very first treatment offered for RLS, before resorting to medications.

You need blood tests for serum iron, transferrin, ferritin and haemoglobin. If your haemoglbin is low then you have iron deficiency anaemia and need iron therapy.

If it's NOT low, but your ferritin level is below 75ug/L then it's best to start taking an oral iron supplement. The idea is to raise ferritin to at least 100, at which point 50% of RLS sufferers benefit.

Here two links to information about this.

cks.nice.org.uk/topics/rest...

sciencedirect.com/science/a...

The other thing these doctors could have also considered is if you're taking any other medications which might be making your RLS worse. The main ones that do this are antidepressants and sedating anti=histamines, but there are many others This is also identified in the first of the two links immediately above.

As I wrote, I have no authority to advise you on what medications to take. However, the links I've given are authorities. You can refer your doctor to them. Particularly, they can NOT dispute anything that the National Institute for Health and Care Excellence publish.

I wouldn't bother seeing that particular neurologist again, they could potentially do you more harm than good.

Jamhulio
Jamhulio in reply to Manerva

Thank you so much for your quick response. I did think maybe that neither ropinirole or rotigotine would be a good idea due to augmentation but I wasn't sure. It must have been that the patch is less likely to cause it that I had read. I haven't seen the Neurologist yet, they have written to GP in lieu of an appointment apparently! I have told the GP on several occasions that I do not want to take a dopamine agonist but they are just not listening. I have now spoken to 6 different GPs in the same practice. They would never prescribe me temgesic as GP has already said no way to any kind of opiod. I only managed to get a referral to Neurology as I referred her to NICE guidance and even emailed them a copy and I also threatened to make a complaint. I will have a think about switching to Pregabalin (although may just stick with Gabapentin 900mg) and hope that if I eventually get to see the Neurologist she will consider an opiod which I doubt. My ferritin level is 75 at the moment after I insisted they check my iron levels, this is after being on iron supplements for years re my Crohns disease and in fact told me to stop the iron as don't need it!. I spoke to my Crohns nurse today and even she said I didn't need the iron. She also said I'm low in Vitamin D but that it doesn't matter! I honestly despair with these health professionals sometimes. I will continue to take iron and Vitamin D that I will purchase myself if GP stops them. I have been on the sick from work for a month as I ended up getting so depressed with my legs (they are painful) and suffered really bad anxiety so my occupational health put me on the sick for a month to get Gabapentin into my system. For anxiety and depression GP's suggestion was Fluoxetine or Mirtazapine - again I despair and am not taking either of these as will make legs worse, I am trying to manage it myself using mindfulness etc. Thank you again for your response :)

Manerva
Manerva in reply to Jamhulio

I am so sorry that your doctors are so ignorant about RLS.

I do still believe that the NICE CKS on restless legs is a good source of information. I suggest you familiarise your self with the whole web site and quote it to your doctors. Point out that it IS an authority on RLS and published by NICE. It would be arrogant of them to ignore it.

Vitamin D is good for RLS. Not only that but the government say it, I've even heard Boris say that everybody should be taking vitamin D and some people can request it for free. Your crohn's nurse appears to be contradicting public health advice! To tell you your level is low but you don'y need to take any is appalling.

As you know and as the NICE CKS clearly states if your ferritin is 75ug/L or less you should be considering an oral iron supplement. Any doctor or nurse advising you differently is ignorant of the needs of people with RLS.

Good ideA to take an over the counter iron. "Gentle iron" ferrous bisgylicnate is possibly the best for you as you suffer from crohns. Take it 30mins before or 2 hours after eating along with vitamin C, a tablet or a glass of orange. Also do NOT take it every day, only take it once every two days. These measures will help ensure you absorb it better.

I'd suggest, in fact, that you do NOT take the iron prescribed by a doctor, it is too strong and can exacarbate any bowel condition.

Te neurpo patch is thought to be less likely to cause augmentation. However, it's still a dopamine agonist and can still cause it. Also, once you've augmented from one dopmine agonist.

Please be aware that no doctor can force you to accept a particular treatment. According to the law of informed consent you have the right to decide what treatment you will accept. When you refuse a particular treatment, they cannot subsequently discriminate against you in any way because of a refusal. They cannot refuse alternative treatments. I have heard of members of this forum saying their doctors have threatened them for refusing, this would be illegal. They can be reported to the General Medical Council for this.

Lets hope the neurologist is more reasonable than your GPs, but I would be prepared for your consultation by having relevant information by your side.

I appreciate how difficult it is to deal with the way in which some doctors conduct themsleves, but they're not above reproach and I wouldn't hold back from submitting complaints about their conduct nor reporting them to the General Medical Council ethics committee

Jamhulio
Jamhulio in reply to Manerva

Very interesting, thank you. I will feel more confident in refusing the dopamine agonists and also I will consider a complaint to the General Medical Council ethics committee if I don't get any further. I have already sent them the NICE CKS and all they did was refer me to Neurology who have suggested Ropinirole long acting or the rotigotine patch, none of which I want to take. I am going to have a think and I will be staying on either Gabapentin 900mg and supplementing with Cocadamol or my hubby's Codeine or I will switch to Pregabalin. What dose of Pregabalin should I request that equates to Gabapentin 900mg. It's a sorry state of affairs when we can't get the help we need and I would be lost without this forum and advice. Thank you

Manerva
Manerva in reply to Jamhulio

900mg gabapentin is equivalent to 150mg pregabalin.

A warning, some doctors ask you to wean off one, i.e. slowly reducing the dose, before starting the other at a low dose, then building it up.

This totally isn't necessary. It IS recommended when it's taken for epilepsy, but not necessary for RLS.

The other thing they may do is try to prescribe a starting dose of pregabalin e.g. 50mg which would be OK if you were just starting on it. However you're already taking the equivalent of 150mg so prescribing only 50mg would be the same as reducing the dose suddenly from 900 to 300mg of gabapentin or from 150 to 50mg pregabalin. This would cause withdrawal effects.

Jamhulio
Jamhulio in reply to Manerva

Thank you :)

Jamhulio
Jamhulio in reply to Manerva

Actually I've just checked and I won't be getting an appointment with Neurology, in fact the Neurologist has just written to GP with medication suggestions instead of seeing me at all!!! I'm at a loss if I can't even see a Neurologist.

Manerva
Manerva in reply to Jamhulio

Since the neurologists suggestions aren't particularly helpful anyway, NOT seeing them is not going to make much difference.

I believe you're going to have to be quite assertive with your GPs insist on them listening to you.

The NICE organisation is a government funded health authority and the CKS is specifically published to guide GPs.

Nite that the GMC also has explict ethical guidelines about shared decsion making and consent which doctors can be reported for if they don't adhere to them.

see this link

gmc-uk.org/ethical-guidance....

If you wish to report a doctor then you will need some details about the doctor including their GMC number. You can find this from this link.

gmc-uk.org/registration-and...

However, it might be worthwhile submitting a complaint to the GP surgery in the first instance or if dissatisfied with the response, complain to NHS England (Scotland etc).

Jamhulio
Jamhulio in reply to Manerva

Thank you again. I will have a think about it all and how I will go about my complaint and as per Joolsg's advice I will write to Kirsty Anderson and Haemotology department. Failing all of that I will continue on Gabapentin and take my husband's Codeine when needed, not the best solution I know but I am running out of fight, it has already made me mentally unwell.

Manerva
Manerva in reply to Jamhulio

It must be distressing. I hope you find some solution soon.

Pagan707
Pagan707 in reply to Jamhulio

I admire your positive attitude and tenacity. Unfortunately being a Dr has become less of a vocation and more of a business and profit choice. I do not want to cast this wide net over all drs just some. This extends to nurses as well I’m afraid. My wife is an intensive care nurse of over thirty years and treats each patient as if they were one of her own. I have had many many stays in hospital and a dozen operations so can vouch for differences in commitment and competence too. I think the best approach to take is being your own advocate, researching things and asking pertinent questions and for referrals to hospital specialists when needed. I also write to my doctor for two reasons. One poor mobility but the second and more important my written queries and concern are in written evidence on file. Drs handwriting is notoriously bad, what is not so widely known is the shockingly little notes they make after your appointment. The old lawyer in me is much happier with carbon detailed copies than a scribble of one or two lines. Plus I often forget to mention important things when at the appointment. No one knows your body like yourself or how medications affect you. Best of luck.

Alison7
Alison7 in reply to Jamhulio

I’m so sorry about your medical advice too and I was a GP and also have severe RLS. It’s an awful condition to have and also to treat but that is no excuse for the widespread ignorance & paternalistic & arrogant attitude - I despair. It’s like a throw back to the paternalism of the old days which has improved to some extent but is still present.There is no easy answer to RLS, otherwise I would have found it.

Drs are really scared now of putting folk on opioids & are warned against because of what has happened in recent years, and no one really knows the long term risks ( it wasn’t known about DA’s & look what happened ) but proper empathy & a demo that they know the up to date facts goes some way to help.

I still think anyone who doesn’t have severe RLS just has no idea how truly dreadful it is to get through each night ( and that includes the folk with mild RLS who basically make me seethe with their ‘just do ......’. One of my dr friends told me ‘just cycle your legs lying on your back for 10mins & that will fix it for the rest of the night’ ...... I wish!

Good luck & I’m sorry you’re suffering

Manerva has given you excellent advice.

I attach a copy of the opioid study by Dr Winkelman at Massachusetts General in Boston USA.

Low dose opioids are safe & effective for RLS & do not lead to addiction unless there is a history of abuse.

Another piece of ‘evidence based medicine’ to show to your GP.

I’ve been on both Gabapentin and pregabalin in the past & found pregabalin had fewer side effects for me. Both cause increased appetite & water retention but you can control weight gain by monitoring food intake.

mcusercontent.com/068feaf31...

Jamhulio
Jamhulio in reply to Joolsg

Thank you. I will print it off and keep it for if I get to see Neurologist. It is 100% a waste of time trying to send to GP as they have told me under no circumstances which I get any kind of opiod medication. I'm thinking of changing GP practices but not sure how easy this will be in the current Covid climate. Thank you for the advice about Pregabalin and Gabapentin. I really want to try Pregabalin but terrified of the weight gain. That's sounds vain but I am already at least 4 stone overweight due to the steroids I have had to take in the past for my Crohns disease.

Joolsg
Joolsg in reply to Jamhulio

Crohn’s disease causes malabsorption of minerals- particularly iron so the first thing you need to do is get full panel blood tests. Serum ferritin needs to be above 100, preferably 250 & you would benefit from an Injectafer iv iron infusion.

Where are you in the UK?

You can write to the local haematology department at your hospital and enclose more ‘evidence based’ research to persuade them to do the infusion. Link below.

Infusions dramatically improve RLS in 60% of cases & in your case would avoid the need for meds & would save the NHS money in the long term.

It does sound like you need to change GPs as they are clearly totally ignorant about low dose opioids for RLS. If they realised how‘ ‘addicted’ people become to dopamine agonists and how horrendous withdrawal from these drugs is ( worse than heroin withdrawal for most) they would change their views on opioids.

sciencedirect.com/science/a...

Jamhulio
Jamhulio in reply to Joolsg

My ferritin is 75 after already taking supplements every day. My GP said in fact to stop supplementing as this level is fine even after I explained for RLS it needs to be much higher. More worrying is the fact that my Crohns nurse said to stop as well. She also said it was fine that my Vitamin D was low!! I will definitely look into changing doctors I think. Thank you again.

Jamhulio
Jamhulio in reply to Joolsg

I meant to say I am in South Shields which is between Newcastle and Sunderland, North East

Joolsg
Joolsg in reply to Jamhulio

There’s an RLS specialist at Newcastle called Dr. Kirsty Andersen. The only problem is that, like many so called specialists in the UK, she discounts the low brain iron issue & still prescribes Dopamine Agonists.

However, she will be aware of how useful opioids can be & might be more amenable to prescribing OxyContin, Targinact or Buprenorphine.

She’s bound to be an improvement on your GP.

I by passed my GP & wrote to my local hospital (St. George’s in Tooting) & they read the report & agreed that the odds were in my favour so gave me the infusion in 2018.

I’m one of the 20% minority for whom iron infusions didn’t work but at least I tried it.

I think my GP & MS neurologist are sick of all the research articles I keep sending !

Jamhulio
Jamhulio in reply to Joolsg

Thank you. I think I will write to Dr Kirsty Anderson and also haematology. Thank you

martino
martino in reply to Jamhulio

You have had great advice here but I would like to share my experience. I, like so many, suffer from severe RLS. It is largely under control with the following:

1. 2 mg Rotigotine patch (since 2015)

2. 200mg Tramulief

3. 600mg Pregabelin

I do suffer from peripheral neuropathy so the mixture tackles them both. I switched overnight from 2700mg of Gabapentin to 450mg of Pregabelin with no problem

What works for me won’t necessarily work for someone else

I hope you get helped by someone who really understands!

Jamhulio
Jamhulio in reply to martino

Thank you for replying. Did you have any side effects with Gabapentin and Pregabalin. I really want to try the Pregabalin but I'm worried about effects. I'm okay on Gabapentin but just doesn't think it's hitting the spot enough

martino
martino in reply to Jamhulio

I’m not sure. My memory is not what it was and I think the gaba drugs are responsible. That apart I haven’t had any noticeable side effects but perhaps I have just been lucky!

I am on gabapentin for RLS and I have been on the maximum dose of 2700mg and still have break through symptoms. I have managed to knock my dose down to 1200mg a day but that is with 120mg of codiene (60mg early afternoon and 60mg at about 10pm). Gabapentin alone does not work 100% for me but the added codiene has made amassive difference to my life. If the Dr will not prescribe codiene then you can get codiene/brufen over the counter at 12mg of codiene and 200mg brufen per tablet. You could start off by taking 2 twice a day to see if it makes a difference. It is disgusting that you are being withheld medication that could make a massive difference to your life. I am so lucky in that my Dr is fine with me taking codiene but they do like to mention how addictive it it is. I reduce my codiene dose every so often so that it doesnt lose its effectiveness. I hope you get some closure.

Thank you for replying. I'm so upset by all of this. I have been buying over the counter and it doesn't help a lot but today I decided to try my husband's Codeine and 30mg didn't work but wow after trying 60mg I have never had my legs feel so good for months and months. I'm fuming that doctors won't prescribe it to me.

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