update from Ruffabug (End of life plan) - Restless Legs Syn...

Restless Legs Syndrome

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update from Ruffabug (End of life plan)

Ruffabug profile image
20 Replies

A big thank you to those who kindly replied to my post of a couple weeks ago entitled HELP PLEASE TO REDUCE DOSE OF NEUPRO .To remind you I have terminal cancer with roughly six to nine months life expectancy.

After reading your replies I decided not to try to reduce the Dopamine Agonist Receptor drugs. I emailed my Neurologist and sent him a link to the Mayo Clinic algorythm. I then asked him if I could go ahead with the following plan. Which is to continue for now on the 4mg Neupro patch plus a 1mg Ropinerole. Then when this no longer works, which is fast approaching, add a 1mg patch instead of the 1mg Ropinerole. After that go up to the 6mg patch. He now realises that the two things are not equal strengths! Then for the next stage to try raising the dose of the Gabapentin from 1, 100mg per day , which I take now, to the maximum dose of 1,200 3x daily.. if that is not effective then to take the lowest dose of Buprenorphine together with an antisickness drug Ondansetron and as much laxatives as I need to compensate for the constipation it causes. He said that my GP may not agree to prescribe Buprenorphine in which case he would write a script for it. This is possible as here in the UK if is not readily prescribed. (Evidently Methadone is only prescribed for drug addicts ) However I couldn’t then get it on repeat and would have to keep asking him for more single prescriptions. He didn’t seem too keen for me to have it, mainly because of the constipation which he knows I am susceptible to. Is Tramadol less constipating than it? Once when on chemo I had to have a nurse come in every day for two weeks to give me enemas. So he may have a point! If this works I could then increase the dose or combine with another opioid until the end of my life. I don’t know what Zofran is called in UK. I’ve never heard it mentioned. The anti nausea drug that suits me best is Prochlorperazine (Stemitil) which dissolves in the mouth. I am on 3mg. I don’t know if it comes in a higher dose or if I could take two should the nausea become much worse when on the Buprenorphine. When that time comes I would suggest that I have that instead of Ondansetron.

I could then save the 8mg Neupro patch as a last resort for end of life. He replied by phoning me and making sure we agreed on it all.

It is a combination of his plan for me, which included Tramadol instead of the Buprenorphine, and your suggestions. So I am compromising to an extent because he is willing to come halfway with my (or your) suggestions. And I want to keep him onside as he will be overseeing my medication for RLS and migraines during my palliative care. He will be working in conjunction with the hospice doctors.I may suggest to him that I have an iron panel done sometime soon but for now I am much more at peace with it and am worrying less about the future. Please feel free to comment but I don’t think I could change the plan for the time being. Perhaps in the months ahead I may be able to ask to tweak it if necessary. Thank you all again.

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Ruffabug
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20 Replies
SueJohnson profile image
SueJohnson

That sounds like a good plan.

Ruffabug profile image
Ruffabug in reply to SueJohnson

Thanks Sue.

ChrisColumbus profile image
ChrisColumbus

While I have no experience with any of the drugs in your plan so can't really comment usefully, I wish you all the best with it

Ruffabug profile image
Ruffabug in reply to ChrisColumbus

Thank you.

Madlegs1 profile image
Madlegs1

I am full of admiration at your planning.

I wish you all the very best, and the strength of mind to cope with any adversities that may be thrown in your way.

Please know that you have our full support in your planning and are here to give whatever support we are able to.

All the best.💚💚💚💚💚💚

Ruffabug profile image
Ruffabug in reply to Madlegs1

Thank you so much.

RiversW profile image
RiversW

I wish you luck as well. Rivers

Ruffabug profile image
Ruffabug in reply to RiversW

Thank you.

AnotherRLScase profile image
AnotherRLScase

re. The nausea medications, ondansetron is the same as Zofran. I think Zofran is the official brand name & ondansetron the generic.

Ruffabug profile image
Ruffabug in reply to AnotherRLScase

Ah! Thanks for clearing that up.

Jumpey profile image
Jumpey

I wish you peace and love and comfort and everything you need on the rest of your journey. X

Ruffabug profile image
Ruffabug in reply to Jumpey

Thank you.

Dotmowatee profile image
Dotmowatee

I find Targinact, a slow release opioid very effective and no constipation. It's licensed in the UK for rls.

Ruffabug profile image
Ruffabug in reply to Dotmowatee

Thank you. That’s useful to know.

Bramble2000 profile image
Bramble2000

Sending you a big, gentle hug. Xxx

Ruffabug profile image
Ruffabug in reply to Bramble2000

Thank you.

Merny5 profile image
Merny5

Wishing you comfort and peace.❤️

Ruffabug profile image
Ruffabug in reply to Merny5

Thank you.

b1interest profile image
b1interest

Sending you another hug ....

Ruffabug profile image
Ruffabug in reply to b1interest

Thank you.

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