Advice moving forward:

[Drls]

I currently take 300mg pregabalin but it only is about 60% effective, some nights it’s not effective at all, I also take cocodamol and sometimes clonazepam. I had already been on roprinirole and managed to wean myself off.

I need some advice moving forward… I saw Professor Walker about a year ago - his next suggestion was Targinact or other opioid. My doctor was horrified at the thought of prescribing opioids and I suspect he won’t consider this. What are other peoples experiences? I have read a lot on here about buprenorphine which I believe has a ceiling effect which means dangerous amounts of dosage are not possible. Where should I go next? At the moment I am living a sort of half life, I have retired early ( I am 60) doing anything consistently is not possible - I am not sure whether to stay with the pregabalin since it is to some extent effective or fight for something else - but would my symptoms be improved? And what would be the long term effects….. any guidance would be greatly appreciated !!! Thank you

[SueJohnson]

Congratulations for weaning yourself off ropinirole. I know that wasn't easy. I would suggest you increase your pregabalin by 25 mg every 2 days. The maximum is 450 mg. If you ever decide to come off pregabalin, do it slowly so you don't have any withdrawal effects.

[SueJohnson]

Also have you had your ferritin checked? And are you taking any other medicines or OTC supplements? If you list them here I can tell you if any of them make your RLS worse and perhaps can give you a safe substitute.

[Drls in reply to SueJohnson]

Hi Sue I had my iron levels checked last summer and it was 120 …. I’m in the U K and was told the highest level of pregabalin allowed was 300 - also I have to say the side effects are not great, especially an inability to use my legs properly and change in ‘gait’. I also take calm legs supplement, with iron, several vitamins and valerian. I am also on thyroxine. I have spent two years trying different things to help, reading , researching… which is why im now thinking are opioids the only answer??? Even though I would struggle to get them prescribed ….

[SueJohnson in reply to Drls]

According to this site up to 600 mg is allowed although it is not specific to RLS. 450 mg is considered the maximum for RLS, nhs.uk/medicines/pregabalin/ Print out the section of the Mayo Clinic Updated Algorithm on RLS and show it to your doctor. As far as the side effects, I doubt they would be any worse on increased dosage. Unfortunately you thyroid medicine may be making your RLS worse, but I can't find any safe substitute and you obviously need it.

[Drls in reply to SueJohnson]

Ok thank you Sue - I will discuss that with Prof Walker when I speak to him - he had initially said no more than 300mg.

I printed off the algorithm, the letter to gps from the rls website and an extensive list of things/ therapies / lotions/ electrical devices that I have used ( this was very long indeed) and sent them to my gp. That is the only way I got a face to face meeting with the gp and this is how I managed to get his agreement to prescribe clonazapam which had initially been refused. Unfortunately after all of my effort this did not really help.

It is definitely a long hard slog to get practitioners to realise that this is not a minor condition for many people. I will continue to persevere! I agree with lottem 60% relief is not enough .

[Hidden in reply to SueJohnson]

I'm not sure why you believe the side effects aren't worse with dose increases. That is most definitely not my experience of pregabalin.

[SueJohnson in reply to Hidden]

In general that is the case but everybody is different. The one side effect that does depend on the dose is edema which if you get it, does not appear except at higher doses, but once you get it any higher dose does not make it worse. I'm sorry that wasn't the case with you - what side effect was it?

[Hidden in reply to SueJohnson]

I was moreso interested in where you sourced the information about side effects not increasing with increased dose?

[SueJohnson in reply to Hidden]

I can't find where I found that information. It certainly didn't happen to me and I take 1500 mg of gabapentin.

[LotteM]

Hi! I am also 60 and recognise you story about early retirement. I am on buprenorphine (7d patch at 5mcg/h) which makes me sleep -too- well and also makes me feel fatigued during the day. Well, that is better than not sleeping and being tired too.

In your situation, it may help to add an opioid rather than replace the pregabalin with an opioid. Medicines in combination generally require smaller doses than single medicine treatments. Your doctor (gp) appears to be a hurdle, but Targinact IS licensed for rls and mentioned in the NICE guidelines. Otherwise tramadol or even codeine may help. It may be that your doctor feels strongly about Targinact (oxycontin/nalexone), but may have a different attitude towards Temgesic, a sublingual form of buprenorphine. See if and how Prof Walker can help. It seems weird that if he, a specialist, prescribes a medicine, your gp refuses to prescribe it. In that case, make her/him contact Prof Walker.

I just want to say that 60% coverage is not good enough. If you get better control, you may end up feeling much better. It is worth 'fighting' for it.

[Drls in reply to LotteM]

Thank you LotteM! I saw Professor Walker privately - my gp would be happy for him to prescribe privately I think but he doesn’t want responsibility for prescribing an opioid - and maybe doesn’t want the cost either …I have wondered about Temgesic - I think I will have another private consultation with Professor Walker and then use what he says as leverage with the gp. I would like to keep it all under the nhs so everything g is In the sane place …that seems a safer situation - thanks

[Joolsg]

Dr Buchfuhrer told me that many patients who augmented on Ropinirole just do not respond well to pregabalin. I was on 25mg Oxycontin and 150mg pregabalin for 5 years and still had VERY severe RLS. 36/40 on the IRLS score.I switched to sublingual Buprenorphine last July. I take 0.4mg (0.2 at 10 pm and 0.2 at midnight).

It has been miraculous. Zero RLS day or night.

I just wish I had not accepted the advice of Prof. Chaudhuri at Kings who kept telling me there were no other options and 5 hours broken sleep every night was as good as it would ever get.

Push for better treatment.

[antelope99 in reply to Joolsg]

Good Morning Jools

So pleased for you and your success with buprenorphine.

I too am under Prof Chaudhuri, each time I have my telephone apt, they keep offering Targinact as Pregabalin isn't working too well.

I am worried about takingTarginact as what would I do when it stops working as of course the dopamine agonists have. I will never forget the withdrawal!!!

Do you think this might also happen with buprenorphine?

I sincerely hope not.

[Drls in reply to antelope99]

Hello antelope99 you are in exactly the same position as me, I’ve been on the dopamine agonists, I’m now on pregabalin - not working - I’m now considering Targinact or Temgesic / bruprenorphone ( even though my gp will not prescribe opioids) -

I am also concerned about the long term implications of this / addiction/ withdrawal since at 60 I could be on them for a long time

On the other hand I want my life back so the prospect of no symptoms as jools has experienced seems worth the risk…..

Has anyone got any info regarding the long term implications of Targinact or temgesic?

Thanks

[Joolsg in reply to antelope99]

Targinact is licensed for RLS in the UK. However, it works well for many ( Madlegs) but not for others. This is because it only works for 4 or 5 hours and so causes mini opioid withdrawals during the day and night. RLS is the main symptom of opioid withdrawal!.That is why Buprenorphine works well when Oxycontin and Targinact have failed.

Dopamine agonists cause augmentation. Opioids Don't. Augmentation is a severe increase in intensity of RLS as you know. That doesn't happen on opioids ( tramadol is the exception).

Dr Winkelman's opioid study shows that low dose opioids are safe, effective and do NOT lead to an increase in dose. Most people in the study are still on the same dose many years later.

I was terrified of starting opioids but Buprenorphine has not led to a worsening of RLS or an increase in dose and all the evidence shows that getting off dopamine agonists is far harder than heroin withdrawal.

I understand your concerns about Targinact but you will know very quickly if it works for you. And you may need to adjust the dose in the first year but if the average dose of 30mg taken in 2 x15mg doses doesn't help, you could then ask for Buprenorphine.

[antelope99 in reply to Joolsg]

Thank you Jools for your very informative info.

I decided quite some time ago not to try Targinact.

My next telephone conversation with the Dr Chaudhuri team, is in December.

I have mentioned Buphrenophine before but told not licensed in the UK, will try again though.

I feel sure that my gp would not prescribe anyway, they have to cover their back which I understand.

I am so pleased for your success Jools, just wondered if you need to take any other medication for your rls as well as Buprenophene?

[antelope99 in reply to antelope99]

Just a wondering Jools have you thought about a "Just Giving" page for fundraising. It would be for a very good cause.

[SueJohnson in reply to antelope99]

How much pregabalin are you taking?

[antelope99 in reply to SueJohnson]

Hello Sue

I only take 100mg of pregabalin, it works slightly but when I sit down the next day, which is not very often because of rls, I just fall asleep, so I dont think it is an option to increase the dose.

[SueJohnson in reply to antelope99]

It may or may not be a result of the pregabalin. It might just be because you aren't getting the sleep you need. Why don't you try not taking the pregabalin for a couple of days and see what happens. If it is the pregabalin, you might want to try gabapentin. Although they are basically the same and have the same side effects, but some people find that if a side effect on one bothers them, it doesn't on the other.

[oldfidgetlegs in reply to Joolsg]

Hi JoolsgWas your GP happy to prescribe the Buprenorphine? Just asking as mine is most emphatically against it and I wonder if it has approval as a RLS treatment. Thanks.

[Joolsg in reply to oldfidgetlegs]

It is not licensed for RLS in the UK and many GPs are reluctant to prescribe it.I had an email from Prof. Chaudhuri saying he 'had no objections ' provided my GP agreed to prescribe. Luckily my GP agreed to a 3 week trial. It worked the first night. I told Prof. Chaudhuri and he was so surprised that I had gone overnight from 36/40 to 0/40 on the International RLS scale that he wanted to do UK trials. However, he needs £100,000. I have tried several funding and research bodies and written to several pharmaceutical companies ( Accord, Sandoz, Morningside) but cannot raise the funds.

Sadly, until UK trials are done, Buprenorphine cannot be licensed.

Any GP who prescribes it can lose their practising certificate if anything went wrong.

That's why we often need to see a neurologist to get the prescription.

Could you see Prof. Walker privately, get a private prescription and then ask your GP to continue on the NHS?

[oldfidgetlegs in reply to Joolsg]

I'm sure I could see Prof Walker privately, but my GP would never agree to prescribing. I'm going to trawl through the local GPs and hope there is one who might have the merest interest in RLS. I've told my partner that should I be driven to jump off a cliff (we have many to choose from) then he must make as much noise as possible, name and shame, tell the newspapers .... in the meantime we soldier on!

[Drls]

Thank you - god no rls! That would be a miracle indeed - I will take your advice and push to try the Temgesic - even if I have to do it privately - if it works I can then work on my gp…..

[Flutterbyca]

oh, I forgot , I take 0.25 mg of Mirapex for RLS. I call it Restless Body Syndrome. It is a horrible condition . good luck

[SueJohnson in reply to Flutterbyca]

Have you had your ferritin checked?

[dklohrey]

Your story sounds a bit like mine. Have been taking 300 mg of pregabalin for about 6 months and I would say that it is about 60-70% effective. Like you, I was on ropinirole for awhile (for me it was about 20 years without augmentation-I was lucky as it got me through my working years) . My usual schedule is that I take my blood pressure medication at noon (can cause a problem with rls) take one 150mg pregabalin after dinner (tried taking both doses at bedtime but found the split to work a little better) and take the other dose at bedtime (around midnight). I usually have a fitfull sleep until about 2:00am, get up and read for about 45 minutes, go back to sleep, waking up around 6:00am, go back to bed and, if I am lucky sleep until 8:00, with the last two hours of sleep, the best. Like you, I am hesitant to increase the dose since it already takes me a couple of hours after waking until I feel "normal". My only suggestion is to limit your intake of sugar and keep your dinner smaller than usual. This will help a bit. At least it has for me. I am waiting to change my insurance in November so I might have a policy that Mayo Clinic honors. I live about two hours from their clinic but when I called for an appointment they said that they did not take my insurance. I then said I would pay cash and they said they did not take cash. So, now I wait.

[SueJohnson in reply to dklohrey]

Have you had your ferritin checked?

[K2D2]

Is Gabapentin an option? 1800 mg in staggered doses each evening consistently works really well for me.

[Hidden]

I'm on 300mg of pregabalin and it works well for me 90% of the time. However I'd be extremely loathe to take a higher dose as the side effects are already problematic. I took a dopamine agonist before starting pregabalin. I second what LotteM says about adding in an opioid to the pregabalin. Many RLS meds work better in combination than individually, and you can keep your dose of each one lower, thereby minimising adverse effects.

If that doesn't work, perhaps you could try buprenorphine.