Restless Legs

[Conifer]

I have just started to take Neupro Transdermal patches rotigotine , has anyone had experience of this drug and if it was effective treatment for RLS.

Thanks

[Elffindoe]

Hi Conifer.

I see you joined the forum some years ago, but haven't posted much.

Your history seems to be that you have tried an opioid, oxynorm, ketamine and an alpha 2 delta for your RLS, gabapentin and a couple of years ago it seems you started on pramipexole.

I don't know which of these you're still taking.

I also can't tell if you suffer just RLS, on its own, or if you ALSO suffer neuropathic pain.

It isn't clear whether the pain is just neuropathic, partly neuropathic and partly RLS or just RLS.

Bearing all of that in mind, it seems you need some general suggestions about managing your RLS.

Firstly, as regards the patch, this is a dopamine agonist. If you did take pramipexole before, then that also is a dopamine agonist.

In which case, if pramipexole caused you any problems, then the neupro patch may cause the same problems, so there may be no advantage to the patch.

The main problem that commonly occurs with dopamine agonists is augmentation. I'm not sure if this has been your problemt but I imagine it may have been.

The best way of dealing with augmentation, really, is to stop taking ALL dopamine agonists. So if you did have or do have augmentation then the patch isn't a good option.

The most up to date recommendations for the treatment of RLS now say that dopamine agonists should NOT be used as a first treatment for RLS.

What medication is recommended then?

The current medications recommended forthe first treatment of RLS are the alpha 2 delta ligands, either pregabalin or gabapentin.

These are also recommended in the UK as a replacement for a dopamine agonist when augmentation occurs.

However, I see you have tried one before, but apparently stopped it. Depending on why you stopped it, might determine whether it might be worthwhile trying one again.

If you stopped it because it wasn't apparently working, then there are several situations in which it may not seem to be working, but it hasn't been given a sufficient trial or a sufficient dose. In your case, I have as yet, no way of telling.

The other reason some people give up on gabapentin is because of side effects. Again one of the factors in this may be that the drug hasn't been given a sufficient trial as side effects can diminish after a while.

When the first line medciations, i.e dopamine agonists and ligands fail, then this is known as "refractory" RLS.

The recommended treatment foir this is EITHER

A combination of agonist, ligand, low potency opioid and benzodiazepine

OR

A low dose high potency opioid. This includes, oxycodone methadone or more recently buprenorphine.

I see you've tried oxycodone before If you stopped, I've no idea why, so can't say whether its worth trying again. It could be methadone or buprenorphine might be better. I can't say that either.

One thing that none of your posts mention is whether you have been assessed for and tried iron therapy for your RLS. This is ALWAYS recommended as iron deficiency is the main cause of RLS.

This involves blood tests for serum iron, transferrinsaturation, ferritin and haemoglobin. If all these resulots are "normal" then the recommendations are -

a) If ferritin is less than 75 start on an oral iron supplement

b) If ferritin is between 76 and 100 seek an IV iron infusion.

You also don't say if you're taking any other medications for any other health condition or what other health conditions you may have.

There are other health conditions that can make RLS worse and many medications, which, if it's possible to stop them or switch to alternatives may relieve your RLS.

That, I'm afraid, exhausts all the medical treatment options for your RLS. Please see this link.

mayoclinicproceedings.org/a...

I hope others may offer you information about non-medical options.

[Conifer in reply to Elffindoe]

Hi thank you so much for all that information, my main problem is Neuropathic pain i get from time to time shooting pains that effect me mainly in the legs they come at different intensity's and different areas in my legs ie toe thigh knee ankle had it over 40 years seen loads of specialists no one knows the cause as it suddenly starts and then just goes, as a result all they can do is treat the symptoms depending how painful it gets .

I score the pain 1 to 10 for my pain consultant any thing up to 8 and Sulperdol tablets help then 8 Oxinorm then Palxia 50mg tablets (Tapentidol) then when it gets really bad i go onto liquid Ketamine but even this is not working when very bad and find myself crying in pain each time it jabs me sometimes goes on for three days.

When i have no pain and off all the drugs the RLS starts up again on an evening and within 20 minutes of going to bed and bad in my arms as well. they did try me on Gabapentin but it got up to 8x 600miligram tablets a day and i couldn't function so i got myself off them. tried all sorts since then and had lots of bad reactions so now trying the patches.

Thanks so much for taking an interest it helps a lot.

[Elffindoe in reply to Conifer]

As regards your neuropathy, gabapentin or better still pregabalin are a reasonable option. In which case your doctor would have to follow the prescribing guidance for nerve pain.

8 X 600mg gabapentin for RLS is well in excess of the maximum. IN addition increasing the dose of gabapentin above 1200mg is of little value for RLS because of its poor absoprtion. Pregabalin is better for RLS.

I found for my spinal neuropathy that an opioid was virtually useless.

Opioids are beneficial for RLS. If you take an opiod for your nerve pain it will relieve your RLS. Thus, if when the pain subsides you stop the opioid your RLS will get worse, which is what you describe.

It seems to me then that your doctors have things the wrong way round and that you should continuously take an opioid for your RLS, not pain, and try pregabalin for pain.

The nerve pain sounds more like spinal than peripheral. Have you never had an MRI? If it's due to spinal cord compression it will come and go. Inflammation might also be a factor and a course of an NSAID such as Naproxen may help with the pain, better than an opioid.

I'm not a doctor however, so I can't advise you, you'd be better discussing these options with a doctor.

- opioid for RLS

- pregabalin and NSAID for nerve pain.

If you've not had an MRI it's worth asking for.

If the pain becomes more persistent then steroid injections might be the next option.

Rotigotine remains a poor option for RLS.

[macewan13]

Hello Conifer,I’ve been taking it for a couple of years now, along with a 100mg extended release Tramadol. The combination works well. If the RLS breaks through during the night, I take a codeine/ paracetamol pill. I hope this helps

[Fangs]

I am also 71 I started neupro 1mg patch and after about 4 months I had to go on to a2 mg patch I am now on the highest dose which is 3 mg patch The only problem I have is that the patch is blistering my skin I have had to apply hydrocortisone cream on before applying my patch I found that if i apply the patch on my arms the blisters are worse than on my legs

I have also found that if I drink alcohol the patch doesn’t work very well I have added a photo of my upper arm and I still have the scars

But the patch does work if used properly

I hope helps you to decide

Okay

[Conifer in reply to Fangs]

Hi thank you so much for that information, did that happen even though you moved the patch to a different place each day.

Alan.

[Elffindoe in reply to Fangs]

Sorry to say that it sounds as if the dopamine agonist, the patch, is failing. If you were to further increase the dose or even just continue on the current dose it is likely that it will cease working or you may suffer augmentation.

If the patch is the first treatment you've been offered for RLS then be aware that dopamine agonists such as the patch are no longer recommended as a first treatment. This is because they often fail and commonly cause augmentation and have to be stopped.

I wouod never encourage anybody to take a dopamine agonist for RLS before trying other options.

The first treatment that should be considered for RLS is iron therapy. In addition you should avoid anything that makes RLS worse.

Common every day triggers that make RLS worse are alcohol, sugar, nicotine, caffeine or other stimulants.

Many other medications can make RLS worse, if you're taking any of these it will be adding to your problems.

Effective iron therapy can eliminate the need for any drugs in up to 60% of cases and avoiding triggers help many others.

The first line recommended medicines for RLS are either pregabalin or gabapentin.

Please read this link

mayoclinicproceedings.org/a...

[birdman74]

Hello Conifer, I’ve been using the patches for three or four years in conjunction with codeine in the evenings. The combination is by no means a cure-all but I certainly know it if I forget to change the patches in the morning. That gives me a really bad evening and night following. I don't suffer from any side effects from the combination either. Interestingly, following five or six bad weeks my Specialist is suggesting that I add pregabalin to the combination but so far I have resisted that move. In short I recommend that you try the Neupro Transdermal patches rotigotine and I wish you the best of luck.

[Conifer in reply to birdman74]

Thank you so much

[Fangs]

Hi yes I do move the patch every day and I alternate sides I prefer to put the patch on about 2 hours before bed as I find it makes me drowsy and I fall asleep much quickly

I also take Tramadol but that’s because I have spondylitis but I do recommend the patches as it’s the only thing that has been consistent in reducing my RLS

I do hope you have the same relief that I have experienced good luck

[Conifer in reply to Fangs]

thank you so much

[martino]

I have used a 2mg patch for some years. If, as has happened a couple of times, the patch falls off the RLS symptoms have returned. A sort of proof that for me there was efficacy.

[Divii]

Hi

[Divii]

I recently started on Neupro but my sleep has deteriorated; I don’t think I’m continuing