Neupro Patch

[Ced60]

I saw a consultant in the UK a month or so ago and explained that my transition from Mirapexin to Pregabalin was not going well.

At that time, I was taking 150mg Pregabalin and 4 x 0.088 Mirapexin and that at that level i was getting some relief but that any reduction from that in the Mirapexin left me with really bad RLS. Coupled with that the side effects from the Pregabalin (Oedema) was causing me issues in that it interfered with my main hobbies which are all activity based. I wanted an alternative to both medicines really and this was what was suggested ....

He wrote to my GP to suggest a change from Mirapexin to the Neupro Patch and that I should wean off Pregabalin but go cold turkey on the Mirapexin and completely stop them on the same day that I applied the first 1mg patch.

I reduced the Pregabalin down to 100mg without any real issues and then tried the patch - to say that i have had 3 hours sleep in the last 3 nights is pushing it. I thought I had bad symptoms before but this was on another level, I was almost having to run on the spot to get any relief from the intense feelings.

Has anyone tried the patch with success and has anyone tried to go cold turkey on Mirapexin ?The idea seems to fly in the face of all the suggestions I have seen on here?

Many thanks in advance.

[Madlegs1]

You are correct.

Replacing one DA with another is criminally negligent.

I don't know enough about the coequivalent dose but it could well be that the neupro dose is a good bit less than the mirapex dose. In which case you are suffering needless withdrawals .

I'm finding it very difficult to cope with addressing these distressing posts. (I'm not in a particularly good place at present)

I'll leave it for someone else to give a specific way out of your awful situation.

All the best.

[pennygates in reply to Madlegs1]

Sorry to hear that you aren't in a good place. I've found your posts very helpful. Hope things improve for you soon. Hang in there.

[Madlegs1 in reply to pennygates]

Thank you. Much appreciated.

[SueJohnson]

The problem is that by just using a 1 mg patch you are lowering your dose. The equivalent dose would be 1 and 1/2 patches, so you can cut a patch in 2 to get that.

[SueJohnson]

I suggested to you at one time that you might want to switch from pregabalin to gabapentin as the side effects that bother people on one sometimes don't bother them on the other. Did you ever try this? Because sooner rather than later you will augment on the Neupro as you did on Mirapex and will have to come off it.

[Ced60]

I spoke to my GP a about it but they said it was the same drug and the side effects would likely be the same 🤨 she did not seem willing to try it

[SueJohnson in reply to Ced60]

It is basically the same drug and the side effects are basically the same but some people find that the side effects that bother them on one don't bother them on the other. This has been found to be true by many on this forum and it is certainly worth a try so tell this to your doctor and ask if you can try it. otherwise your only choice will be a low dose opioid when you suffer augmentation again and since your doctor said no to that you will have to switch doctors or go private and maybe you need to do that now.

[Ced60]

I specifically didn’t want another DA , but I was not given any other options …. I asked also about a low dose opoid but they said that they were not willing to prescribe one at this time …. What can you do … I feel like I’m fighting for anyone to understand what I am going through ….. I actually fell asleep standing up last night I am so tired

[martino]

I could not tolerate pramipexole or Ropinerole but have been on 2mg Neupro patch for at least 5 years with no problems. I suffer from small fibre neuropathy as well so have a large dose of Pregabelin plus Tramulief and nortriptylene. A lot of meds but everything is under control and I sleep well. I am very fortunate

[Simkin]

I was on mirapexin for 8 years until it stopped working & the neurologist put me on neupro patches.The advice in those days (I am 73) was "come straight off mirapex. Try & bear it, if you can for a few days, preferably a week and then go straight on to neupro patches"

After 2 days of HELL I went straight on to the patches which brought immediate relief for years.

To be fair to the medical profession augmentation was never talked about in those days & neurologists had to try as best they could with the knowledge they had then.

Much more is known about these drugs nowadays.

When neupro patches stopped working the neurologist said "let's try you again back on pramixepole".

So the same thing happened but I lasted only one day without drugs.

When pramipexole stopped working for the 2nd time research showed that some patients were having success with pregablin (I had side effects) & gabepentin.

SO I was told to try gabapentin.

This had no side effects for me even when I went up to 2,100 my tablets but didn't really work either.

The neurologist said he was afraid that was the end of the road until I discovered this site & wonderful Sue & Joolsg & others told me about opioids.

So I have had a very long & very rocky road while rls research was trying different drug relief.

[Ced60]

Hi Simkin - thank you for your reply , you have certainly been through the mill with it - can I ask what you take now to control it ? Are you in the UK ? My GP is just so anti any form of opoid medication.

[Joolsg in reply to Ced60]

Hi Ced60,

Most GPs are quite rightly wary of opioids because of the opioid crisis caused by misinformation from drug companies, specifically Sackler, stating that Oxycontin would definitely not cause addiction. The result was millions of opioid addicts who then had to suffer hellish withdrawal.

In RLS, very low doses of opioids work very effectively and, unless there is a history of abuse and provided the GP monitors the prescription, addiction does not appear to happen and tolerance ( needing to take higher doses to achieve the same cover) also seems rare. This is completely contrary to opioids used for pain relief.

Dr Winkelman at Massachussetts General hospital has set up an RLS opioid register to establish that addiction and tolerance do not happen and the 500 participants are still taking the same low dose they started on ( with small upwards increase in y1 only).

You could ask your GP again to consider a low dose opioid showing the Massachussetts study. You could also refer the GP to NICE guidance which mentions opioids for refractory RLS. As you suffered augmentation on Dopamine agonists and pregabalin side effects are oedema, your RLS is now refractory. Nice did a study on Targinact (Oxycontin & naloxone) for RLS and so there is evidence from NICE on its effectiveness.

You should now insist on a referral to a sleep clinic or neurologist familiar with treating RLS and they will prescribe a low dose opioid to get you off the Patch.

I started off on 25mg oxycontin and 150mg pregabalin for my RLS after Ropinirole. They didn't stop my very severe RLS and I wasted 5 years suffering every single night. The top UK neurologist in RLS told me there was nothing else he could do and that 4 hour's broken sleep every night was the best I could expect. I believed him until I started corresponding with the US expert Dr Buchfuhrer who has a 97% success rate.

Shumbah posted about buprenorphine over 3 years ago but my neurologist initially refused it outright. After my persistence he said he would have "no objection to buprenorphine, if my GP agreed to prescribe it". Luckily my GP agreed to a 3 week trial.

My RLS went from 36/40 on the IRLSS to 0/40 overnight. I take 0.4mg and have had ZERO RLS night or day since June 2021. I sleep 8 or 9 hours every night.

This is what 97% of UK RLS patients should be getting if treated correctly. This is what is achieved by US experts like Dr Buchfuhrer and Dr Berkowski. This is what should be happening in the UK.

I really, really hope you can talk this through with your GP.

If we are effectively treated, heart disease, high blood pressure, diabetes, anxiety and depression caused by poorly treated RLS will all reduce, resulting in improvements to health and quality of life, reduction in NHS costs ( fewer GP and hospital appointments and drug cost savings) and economic improvements due to fewer days' work lost and increased productivity ( tired, exhausted workers).

Rant over.

I hope your GP researches and learns about the benefits of low dose opioids for RLS and agrees to a month long trial for you of oxycodone or buprenorphine pills or that you get a referral to a decent sleep clinic.

Good luck.

[Simkin]

Yes I am in the UK & I take 10mg of oxycodone.I am lucky that my GP was very happy for me to try oxycodone.

He knows I take advice from Sue, Joolsg and is interested in their experiences.

I think he feels when I say a lot on the forum are in our 70s, 80s and I believe one 90 year old that we are all pretty sensible.

[Ced60]

thank you for all your replies they are so helpful in trying to work out which way to go . I had a telephone consultation yesterday with my neurologist and he has agreed to let me try the Buprenophine … I’m going to start on 0.4’mg tablets with the option of changing to the patch … He is writing to my GP to ask them to prescribe so fingers crosse

[smilingjane]

Congratulations! I take Buprenorphine after neuro' recomendations on this siteIt sounds like this is what you need asap