Help please to reduce dose of Neupro

[Ruffabug]

I have terminal cancer and in January was given an average of six months to live. It is now three months on and I have very few symptoms so I expect to live quite a lot longer than predicted. Having had severe RLS with PLMD for 50 years, and having been put on Ropinerole 20 years ago, I have had augmentation and have suffered with this far more than with the cancer which I’ve only had for three years. My legs were really bad last year, and because of my terminal diagnosis, the neurologist raised my dose by putting me on the 4mg Neupro patch. I had been on Ropinerole 4mg. I’ve had more augmentation and since then I have resorted to taking 1.5 mg Ropinerole at bedtime plus the patch. He now wants me to go to the 6mg patch. I think he is thinking it doesn’t matter as I am heading towards the end of my life. However, I think I could even have another 9-12 months so am reluctant to do this. In fact I would like to reduce my dose if I can so that I can save the 6mg patches to use at the end for a more peaceful time. He says that you can’t go above 6mg as it tends not to work at higher doses for RLS and has bad side effects (nausea). He wants me to have the 6mg patch, then when that augments, to raise my dose of Gabapentin. I am already on 1.200 mg which I’ve been on for years to prevent migraines. He says I can go up a lot higher. Then if that doesn’t help I could take an Opiod. But I may have to take Morphine for pain anyway towards the end. I’m sorry this is so complicated but I would like some advice from Jools and /or Sue Johnson if possible. I worry constantly about my end of life, but mainly for the RLS much more than any pain. If I could manage to go back down to the 4mg Patch now while I’m feeling relatively well and strong, I could hold the 6mg ones in reserve. How small do I need to cut the tablets? Or would it be easier to cut the patches?

[Joolsg]

Oh Ruffabug. I am so sorry to hear this.It is essential that your RLS is completely covered.

The American Sleep Academy recently released their draft guidelines on RLS for comment and your situation is exactly what is mentioned. The experts want dopamine agonists banned, but they have instead left in a recommendation that they should be made available for terminal, end of life cases, where augmentation is unlikely to happen.

However,in your case it is already happening now. You cannot be left on 4mg Rotigitone and Ropinirole. As you're augmented now, it will only get worse.

Your neurologist should now consider emailing Dr Andy Berkowski at

[e-mail]

for professional help and advice.

My view is that your neurologist should immediately prescribe Buprenorphine pills, starting at 0.4mg and monitoring side effects. Many members have reported that they were able to reduce the patch and Ropinirole without withdrawals by taking Buprenorphine.

First, he should switch you from the patch to normal release Ropinirole, at the dose equivalent to the pills and patch. Then he should ensure your serum ferritin is raised by an iron infusion.

Then start Buprenorphine at 0.4mg with zofran for nausea, or better still, cannabis.

Then reduce Ropinirole by 0.25mg every 2 weeks. If you get withdrawal symptoms, increase the Buprenorphine by 0.2mg.

Hopefully, you will not experience withdrawal symptoms.

Many of us find that reducing Ropinirole down to 2mg is not too bad. So you could stay on a low dose of Ropinirole as long as Buprenorphine is covering the worsened RLS.

If withdrawals are minimal, continue to decrease Ropinirole and increase Buprenorphine. The average effective dose is 1 -1.5 mg.

Sending all my love and thoughts to you Ruffabug.

[Ruffabug in reply to Joolsg]

Thank you so much for this. When talking of taking an opioid he said I should try the Oramorph or MST ( a slow release morphine) that I already have some of for treating cancer pain. Would these work or is it essential to use one of the ones you mention?

[LotteM in reply to Ruffabug]

Discuss with your doctor to play it by ear. Find the minimum dose but make sure you are comfortable, which will enhance your quality of life. One thing to pay attention to is end-of-dose effects. Often, medicines do not work as long as are indicated in the documents. Also, at the end of a dose you may experience mini-withdrawal. It often takes the form of a general restless feeling and feeling unwell. Especially as you already have RLS, the (subtle but persistent) restlessness may prevail, and not just in your legs, but also on your upper body. This is based on my personal experience. If this occurs, you need a more frequent redosing. If you end up taking multiple doses during the day AND still alternating between hours of feeling better and worse, then a 3d or 7d patch with continuous release is available.

I really hope you get something that works and brings you calm, at least in your body.

[Joolsg in reply to Ruffabug]

Slow release can produce mini RLS withdrawals. Buprenorphine is definitely the most effective because it has a long half life of 24/25 hours. And someone posted this week that they switched from dopamine agonists to Buprenorphine without ANY withdrawal symptoms. So definitely ask for Buprenorphine and, at the right dose, it will cover your cancer pain as well.

[LotteM]

So sorry to hear this. Isn’t it telling that you are more worried about the RLS than the cancer pain?

If I were you I would discuss long acting opioids, like methadone or buprenorphine. The work generally very effectively in low doses for the RLS. It may help to get off or at least reduce the neupro (and the ropinirole). They may also prove effective for cancer pain once it occurs.

Take the Mayo Clinic updated algorithm with you: mayoclinicproceedings.org/a.... There is a little more info on the use of buprenorphine for RLS. Let us know if you need that and we can hunt down the links for you. I think I gave them in a fairly recent reply, but not readily available now (on my phone).

Wishing you strength, loads of support and warmth from family and friends and restful days and above all nights.

[Ruffabug in reply to LotteM]

Thank you so much for your response. See my reply to Joolsg.

[Ruffabug in reply to Ruffabug]

Hi Lotte M . Could you please let me have this link? Thank you.

[Joolsg]

curaleafclinic.com/I forgot to add the link for the cannabis clinic. Medical cannabis will help any nausea caused by Buprenorphine AND it really helps with pain. I know many cancer patients use cannabis to vape when pain or nausea happens. It's not available on the NHS, so you have to pay. You will need to arrange a consultation, then they contact your GP for records.

It works out about £5 a day.

[SueJohnson]

Ropinirole and the patches should keep working. They prescribe up to 16 mg for Parkinson's. And there are 8 mg patches. Yes there is the possibility of nausea at higher doses.

If you switch from the patches to straight ropinirole you would need 1.5 times. For a 4 mg patch this would mean 6 mg ropinirole.

Personally I wouldn't worry about reducing considering your cancer. You can try it as Joolsg suggested with buprenorphine, zofran and cannabis but if you have withdrawal symptoms I would go back up. You should enjoy what you have left of your life and not be suffering with withdrawal.I would increase to what ever controls your RLS and use as much opioid as needed at the end to control the RLS.

I agree with Joolsg and LotteM on their suggestions on getting an opioid now and on zofran and cannabis.

[Ruffabug in reply to SueJohnson]

Thank you so much Sue. I will be having a consultation soon with my Neurologist who seems open to suggestions which is really good.

[Kakally]

Dear Ruffabug,

I wonder if you don’t mind me suggesting something too.

I agree about asking Andy Berkowski’s opinion.

Also, Methadone would seem a really good choice for now and if you tolerate it well , plus it helps, then continue to reduce the ropinerole if possible .

Then you still have oramorph if needed later on.

My genuine deep LOVE to you . Kakally xxx

[Ticki]

my prayers are with you. Buprenorphine has been a great success for me and I hope you can find a good med to give you some peace.💜

[Ruffabug in reply to Ticki]

Thank you Ticki. I appreciate your reply. X