Making a new start.

[Lineker]

You know the situation: it’s five in the morning and there’s no chance of sleep. I can’t be the only person who ends up writing for help because there is nothing else to do while waiting for the dawn.

The story so far: initially, like many of you I took Pramipexole, which allowed me to sleep, although there were side-effects. After getting the real story about Pramipexole I weaned myself off. Next I tried Gabapentin, for which I had high hopes. Unfortunately, I have never managed to sleep properly with this drug. Over the past six weeks I have reduced my dosage; I am now on just 200mgs per day. Of course, I am in constant pain. In desperation, I recently took some Co-dydramol and slept like a log. It is so tempting to keep taking anything that helps with sleep.

I am due to see my GP soon, but I don’t know what to ask for. Has anybody got any suggestions on what I could do next. All ideas will be most welcome. Thanks again to all of you who have replied in the past.

[Munroist]

There are four main treatment pathways for RLS, which I am sure you will have seen in previous visits to the site. These are iron therapy to raise ferritin, alpha 2 delta ligands such as pregabalin and gabapentin, opioids such as buprenorphine and oxycodone, and finally dopamine agonists such as pramipexole and ropinirole , although dopamine agonists are now not recommended due to the significant risk of augmentation and ultimately painful withdrawal, as well as long lasting damage to dopamine receptors.

Iron levels can be very important for RLS sufferers and you should get a blood test to check your ferritin levels. Ferritin normally ranges between 25 µg/L and 250 µg/L but for RLS sufferers it’s recommended to be above 100 µg/L and preferably closer to 200 µg/L. Your GP can arrange a blood test and you need to ask for full test which shows ferritin and TSAT% as a minimum. Check with the surgery whether you need to fast or not before the test. If you need to raise your ferritin you can try oral supplementation using ferrous sulphate or iron bisglycinate making sure you take these at least hours away from food and ideally with vitamin C to help absorption. Some people find immediate relief from RLS when taking iron in the evening.

You have tried and come off dopamine agonists and it’s good that you managed to do so, so the next step would be to try pregabalin or gabapentin. If gabapentin isn’t working for you then you could try pregabalin which is essentially the same drug but some people find it works slightly differently, both in terms if effectiveness and the side effect experienced. The dosage levels for pregabalin and gabapentin are quite different and 600mg gabapentin is equivalent to 100mg pregabalin. You say you are on 200mg a day which is very low for gabapentin, the max recommended dose is 1800mg so without knowing your history you may not have been taking enough gabapentin. However long exposure to domaine agonists can damage your dopamine receptors permanently in which case gabapentin or pregabalin may not be effective for you.

In that final case then the backstop treatment is opioids such a buprenorphine or oxycodone. You should read other posts on the site about these drugs and the issues and benefits of taking them. Search on either of those names. Buprenorphine especially is recommended and although an opioid is much milder than others and often given to those trying to come off high doses or treat addiction. However the medical establishment is generally very reluctant to prescribe opioids because of recent American scandals where it has been over prescribed and people have become addicted so your GP may be reluctant and you may have to work hard to get it prescribed. However co-dydramol contains a mild opioid and you say it helps you so that may be evidence that careful use of the right opioids could help you.

The above approach is more authoritatively documented in the Mayo Algorithm which you should read and may be useful for you to discuss with your GP.

mayoclinicproceedings.org/a...

Don’t discount iron supplementation without trying it. It’s the simplest treatment with few or no side effects and if you have low iron there may be other benefits. Keep reading the posts on the forum to learn from others’s experience and knowledge. Sue Johnson’s responses in particular are comprehensive and well written. Good luck.

[Munroist]

Take a look at RLS-UK website and go through the Understanding RLS menu.

rls-uk.org

[Lineker in reply to Munroist]

Thank you so much for the link. I almost cried watching the online videos. It was oddly comforting to see people go through the same suffering.

[SueJohnson]

In September you were taking 300 mg 4 times a day and I advised you to take it at night only and that the Mayo algorithm said that 1200 to 1800 mg was the usual effective dose. I assume you tried this and you still couldn't sleep. I agree with Munroist that you could try pregabalin. You can switch directly to whatever you were taking at your highest dose divided by 6. For example if your highest dose was 1800, try 300 mg pregabalin. Try it for a couple of nights and if that doesn't work you can go down to 50 mg on the third night (since you would only be on 300 mg for a couple of nights there is no need ty wean yourself down again).Then after a couple of weeks go to 25 mg and after another couple of weeks you can stop it.

OR just stay on the Co-dydramol since it works. You will need to take it every 4 to 6 hours to avoid mini withdrawals.

[Lineker in reply to SueJohnson]

Thanks as ever Sue. I am intrigued by your comments regarding Co- dydramol. Is there any chance it would help me sleep and kill the leg pain during the day? Would a doctor consider prescribing this? I guess I am looking for the least worst option. Keep up the good work.

[SueJohnson in reply to Lineker]

It's certainly possible. Try it and see. As far as the doctor show him/her the appropriate section of the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... and tell him/her about your experience.

[Joolsg]

I agree with SueJohnson and Munroist.If you weren't taking gabapentin at night only, it would not give you a good night's sleep.

If iron therapy and switching to pregabalin do not help, low dose opioids are the next option.

Dr Buchfuhrer does state that gabapentin and pregabalin often do not work after augmentation on dopamine agonists.

I have zero RLS on 0.4mg Buprenorphine.

[Lineker in reply to Joolsg]

Thanks Jools - your good advice is much appreciated. Can you tell me why you opted for Buprenorphine? Can you take it long term? Thanks for your support.

[Joolsg in reply to Lineker]

I took Ropinirole for 13 years, augmented and went through withdrawal in 2016. I was on pregabalin and Oxycontin for 5 years. I still had VERY severe RLS. I had an iron infusion in 2019 and still no improvement.

Shumbah posted that she was also on Oxycontin and pregabalin and they weren't helping.

She flew to New York from Australia, saw Dr Glen Brookes, started Buprenorphine and her RLS was completely controlled.

I therefore pushed for Buprenorphine. The first night I took it, zero RLS.

It is still working 24/7..

I have my life back.

[Lineker in reply to Joolsg]

What a fantastic story. I am so pleased you shared this. It has definitely lifted my mood. Thank you so much.

[Lineker in reply to Joolsg]

One more question Jools. Do you take tablets or use patches? Thanks.

[Joolsg in reply to Lineker]

I take pills. In the UK, we can get various brands and sizes, starting at 0.2mg and up to 8mg. They work very well for RLS because of their 24/25 hour half life.

The average effective dose is 1 to 1.5mg, the max dose is 6mg for RLS.

Start low and see how effective they are. Nausea is a common side effect until your body adjusts. I used medical cannabis for a week to stop nausea & vomiting, and when I stopped, the nausea had disappeared. I then developed opioid induced anxiety and panic attacks so added 25mg pregabalin at night. It stopped all anxiety/panic.

There's often a solution to the side effects.

I hope you find something that helps.

[shaughnna in reply to Joolsg]

How much Bups do you take?

I take 1 mg suboxone.

Shaughnna

[Joolsg in reply to shaughnna]

I take 0.4mg. I started on 2 x 0.8mg but had crippling nausea & vomiting the next day. So I dropped right down to 0.2mg and the RLS broke through.0.4mg covers all the RLS 24/7.

It has no naloxone in it. You're taking the average dose.

[shaughnna in reply to Joolsg]

I’m glad to hear that drs are willing to Rx suboxone for RLS. I hope more people who suffer from this give it a try.

[Joolsg in reply to shaughnna]

It very much depends on the doctor, and where you live.Here in the UK, Buprenorphine is 'red listed' in many health prescribing areas, and only a neurologist or sleep specialist is allowed to prescribe it. It stops many people accessing it.

In the USA, there are also difficulties finding a doctor willing to prescribe it.

For me,it has been life saving and miraculous.

[Dotmowatee]

I take targinact, a slow release opiod. It's licensed for rls and works very well for me.

[Lineker in reply to Dotmowatee]

Thanks, I’ll look it up.

[Seaux]

Try cutting out carbs and sugar. It may take 3-4 days to get any residual out of your system before you see results. Your results may be a reduction in the intensity and duration of the symptoms. It works for me.

[Lineker in reply to Seaux]

Thanks for the input. Appreciated.

[Hectorsmum2]

I probably dont have it anything like as badly as yourself but I have found magnesium really helpful at bed time

[Lineker in reply to Hectorsmum2]

Thanks for the tip - much appreciated.

[843-318-0047]

5 years ago I went to john Hopkins and was seen by one of the lead researchers in the field. I am now on bupronorphine 8mg daily. It works better than everything else I've tried. I have literally tried everything in the past 40 years!

[Lineker in reply to 843-318-0047]

So glad it’s working for you. I am going to have a proper discussion with my doctor about the suitability of Buprenorphine. Thanks for making contact.

[shaughnna in reply to 843-318-0047]

I’m down to 1 mg. Of the same with great results.

Shaughnna