I urge you all to do your utmost to come off Ropinerole or Pramipexole. I am in end stage cancer and didn't do it. I am suffering horribly with jumping legs night and day because the other drugs I am on make it worse. They tell me that right at the end they will let me have more than 4mg Ropinerole but what if I can’t swallow? And what do I do now when I have maybe two or three months left to live? I think the stress is antagonising it but am not sure. Yesterday they gave me Rotigtone transdermal patches but they made no difference so I have resorted to taking the tablets as well. Even then I still have the jumpy legs. To other health professionals RLS is a mild but annoying condition but as you all know it can drive you to distraction. I have had many suicidal thoughts over the past week. I know it would devastate my husband who loves me dearly and to the rest of my family. I am 78 and have had a good life so it’s only them keeping me from doing it. I am dying anyway and just want to get it over with. I hope you can understand.
Ruthmary: I urge you all to do your... - Restless Legs Syn...
Ruthmary
Beg them to give you more than 4 mg now! Let them know that the RLS uncontrolled is giving you suicidal thoughts. You shouldn't have to suffer like this. How much was in the Rotigotine transdermal patch?
4mg.
It comes in sizes up to 8 mg. Are you saying you took 4 mg ropinirole and the 4 mg of the Rotigotine transdermal patch and it still didn't help?
I agree with what Joolsg said including sending them a video and I also agree with LotteM who said the focus of your doctors should be on your quality of life right now
Yes I will get hubby to do the video this evening which is when it is at its worst. I have an appointment with the top consultant oncologist on Nov 6th so hope to have this and some other useful info ready for him. You have been very helpful and given me hope.
I will keep my fingers crossed for you that you will finally get the help you need.
Sue you are such a comfort and wealth of knowledge. Your posts are so amazingly accurate and you seem to know much more than most doctors. I trust your advice completely
I am so sorry to hear this. Doctors have no idea how horrendous uncontrolled augmentation is on these drugs.I am sorry that you have end stage cancer. To have that and untreated RLS is everyone's worst nightmare and the medical profession should hang their heads in shame over the way you are suffering.
As the chemo/ cancer drugs are making the RLS worse, can you ask your doctors to consult with Prof. Walker, a top RLS doctor at Queen Sq London?
I suspect he would advise a long half life opioid like Buprenorphine or methadone to help control the non stop RLS.
Alternatively, email Dr Buchfuhrer at
somno5586@outlook.com. He is a top US expert and replies quickly to emails. You can show his reply to your oncologist. Tell him the other drugs you are currently taking.
Please write down and video what is happening to you and send to your oncologist and GP and tell them it is caused by dopamine agonists (Ropinirole and Pramipexole) and that they should stop prescribing these horrible drugs.
I also suggest you get medical cannabis to vape from Lyphe or Sapphire cannabis clinics. Cannabis doesn't stop all the RLS , but it can reduce some of the intensity and allow you a few hour's respite. It's only available by private prescription. £50 for consultation, around £50 for a vaping machine to cool the smoke, if you choose flower/bud cannabis.
I am sending positive thoughts your way and thank you for warning others to get off these drugs now, while they can.
So sorry to read this. And I think I can understand your thoughts. Quesrion: do you get opioids to treat the cancer pain? Instead of upping the ropinirole dose or combining it with Rotigotine, it may work better for your RLS to actually reduce the dose a little (or keep it the same), and add a strong long-acting opioid. Buprenorphine and methadone are the most recommended and used ones. Focus of your doctors should be on your quality of life right now, I hope you can get them on noard.
Thank you all for your caring and compassionate replies. I think the situation is made worse by my severe constipation. I am being treated for it ( it was brought on by taking oral morphine) but I keep losing a lot of fluids from the back passage, without the solids and I think I am losing the Ropinerole along with it before it is absorbed into the bloodstream. So any morphine would have to be given another way. They are now putting into place a pump driver and PICC line for those routes for drugs at end of life. Even though I’m not there yet. So I will ask about Prof. Walker tomorrow when I speak to my doctor. I have a soft tissue sarcoma which is a rare cancer and so am being treated at UCLH one of the top London Hospitals.I think they do work with him privately . I nteresting about the cannabis but I don’t know if it’s legal in the UK! Are those places in UK or US?
I assume you are familiair with the Mayo Clinic Proceedings 2021 paper with updated treatment guidelines for RLS? mayoclinicproceedings.org/a...
Although your situation is far from the 'normal' causes and triggers, it may prove insightful. Given your meds and constipation, iron may be an important factor. Worth looking into? Maybe an infusion is warranted. Also, various meds, including opioids, also come in patches. But effect should be monitored, as in your situation uptake rate through the skin and also breakdown rates may be altered.
I really hope your team can improve your quality of life soon. Wishing you strength. Lotte
Cannabis was legalised in 2018 for medical reasons here in UK, but doctors keep VERY quiet about it!
No I don’t have much cancer pain at the moment but I’m sure it will come. If I have already started having it for my legs, will it be less effective for the pain? Do you follow me?
Yes, I follow you. But, honestly, I don't know. Why would it? Tolerance? Maybe. Usually, opioid doses for RLS are far lower than for pain.
Any progress yet in your RLS? When you get it better controlled, it will save lots of energy for you, that you will need to deal with the cancer.
Thank you Lotte. I have an Austrian friend here called Lotte. Yes today there is some progress. I hardly dare to say it! It is now 14.30 and they haven’t started yet. Yesterday they started at 11.30. I think the patch may be working. Perhaps it took 24 hours to get going properly. I will update you later. But I will mention all your suggestions to my doctor at UCLH later.
Bless you. I will pray for sweet slumber for you.
Thank you for your sage advice about those drugs.
Thank you
Thank you. Bless you too!
So sorry to read this.
I'm sorry to hear of your diagnosis and what you're going through. Thanks for sharing your story so that others can at least learn from your experience.
Jools and Lotte have provided some sound advice.
I hope you find a solution 🧡
Thank you.
Thank you.
I am very sorry you are so poorly and that they are not treating you very well or successfully. I agree with Joolsg that methadone , at very low dose to start with, to check on your response , or buprenorphine patches or orally could be very helpful for your RLS no matter what dose of ropinerole you are on. I really send you my LOVE and wish for sensible compassionate care from your doctors. 🤗
Ohhh me dear… giving you some positive energy from Holland🧡
I came off Pramipexol and indeed, it was horrible .
Now trying CBD with THC, easy to get here in this country, I will be in Londen end of November, can I help you by taking it with me or is it illegal to bring it with me..?
Tramadol is also a life saver together with pregabaline. But it is hard to get it from the doctors here….
This platform will give you a some hope.
Lots of greetings, Linda🙏
Yes it is giving me hope. I can’t thank you all enough. I don’t think you should bring any CBD or whatever the other one is into the country t young as it is illegal. But thank you kindly for offering. Don’t want you banged up on my account. I think tramadol might make it worse. Have a feeling I tried it once. What is the other one? I already take Gabapentin 1.000mg a day to support the Ropinerole. I tahini it might be sismilar.
I am so deeply sorry you are suffering when you are dying .I totally understand your feelings of wanting to end you life. I empathise and am sending healing thoughts and prayers. I agree with contacting Dr.B and using his advice to get whatever you need from your doctors.You deserve a peaceful time.Huge good luck my friend.
So sorry to hear your news. My thoughts and prayers are with you and your husband and family at this time. Yes Pramipexole and Ropinerole are awful when they augment. I came off Pramipexole a while back. My Doctor here in Scotland gave me Tramadol and it has stopped the RLS completely. I hope you can get some reprieve.
Oooh… I’m so sorry for you😢. Can’t you get Buprenorphine? It really works. Stay strong, best wishes.
Thank you. What is this drug? I’ve never heard of it. Is it an opioid?
Yes and works 24 hours a day where others need to be taken more often. It is available in pills and in a patch.
Buprenorphine is a long half life opioid and is excellent for controlling RLS.I'm on 0.4mg sub lingual pills.
You would probably need a higher dose to counteract the augmentation.
To avoid constipation, you can take magnesium citrate at night.
Look at the RLSUK website and show the meds charts to your doctors.
Thank you for sharing your story, it's commendable that you are taking the time to make others aware of your symptoms with your current health, it's very much appreciated.
I saw Prof. Walker this week and I can not recommend him highly enough. He gave me more than my allowable time to answer all my questions and queries. Please reach out to him, he is also based at UCLH.
Wish you all the best and I pray for your health.
Hello I am so sorry that you find yourself in this dreadful situation. You have been given some good medical advice but I just wanted to send you positive thoughts for peace and a big hug x
I'm so sorry to hear firstly about your diagnosis and secondly about the horrors you're going through due to the meds. I don't have much to offer in terms of what can be done that hasn't already been suggested, but I would say this - I worked in cancer services in the UK (radiotherapy radiographer) years ago, and I'd say this much... what is the point in waiting for 'the end' to give you the help you need, when you're suicidal and your last few months will be hellish? I'm sorry but they need to understand the severity of how you're feeling and mentally how it's affecting you.
Being harsh here (and sorry for this, but let's be real), but if they're worried about how a higher dose now may affect you, then if the end is coming anyway, why is that a problem, and why can they not make these last months better for you now rather than in the last weeks? The key here for me is getting them to do NOW what they plan to do later.
I'm wishing you all the best for your next appointment and I'm glad to hear you're talking on here about your true feelings - better that than an alternative that none of your family would want xx
this disease is bad enough without added severe diseases as you are experiencing. I hold you in my heart and in my prayers that more progress is made with whatever time you have . you’re a dear sweet lady and that’s why your family and friends love you so much.❤️🩹God Bless you.
So so sorry to hear of your suffering. I hope some solution will be found for you soon
Holding you in my heart and sending prayers for relief for you. 🙏🏻❤️🙏🏻
I am so heart broken to read of your saga! I feel so bad that you are going through this suffering. I hope that you can make these suggestions to your doctors and they will listen. In fact you should demand them to do so. I will keep you in my prayers. Sending comforting hugs your way
I am so sorry to read your message. Sending lots of hugs
oh goodness, I hope you find some comfort and peace.
My heart goes out to you and your family who will be grieving for your torment. Why can't the doctor give you Oxycodone?
I never wanted to start opiaits but after 21 yrs on Pramipexole nothing else helped my RLS. Now with Targin ( oxycodone) I have good nights and bless each day that my symptoms are managed. Sending hugs from Western Australia.
sorry to hear you are suffering like this. I just wanted to make a couple of suggestions re your constipation. High dose vitamin C is great for constipation, two fissy vit c tablets before bed usually sort me out and totally harmless. I also take golden linseed if you are able to eat it. I have it mixed with porridge or museli on a morning. I have also been a constipated person and now have to take codiene for pain relief but these two combined keep me soft and regular.
Hello sweetheart, I'm so sorry to read your massage and your extreme distress. No-one who hasn't had themselves or seen family or friends with RLS can possibly understand the torment we go through. Plus your health issues has been increased manifold. We really feel for you love.I was suicidal 8 months ago after years of 1-2 hours max sleep. I couldn't function, I could not remember a few minutes ago what I had been told even important ones. I could not go from the house and family and friends who came to see me would watch me jiggle my legs or walk around. I would start to cry as soon as they asked me how I was. I was an emotional wreck I just wanted to die, my husband who had to watch me go through it and couldn't find any way to help me.
Over the past 3years I've had two strokes, from RLS.
I told my Dr again I wanted out! She referred me urgently to a Sleep Consultant at St Woolas Hospital. I was Px Methadone. After a few months I reached the max amount 10ml which has helped me to function, It has stopped the awful cramping but I still have the agitation in my both legs. But I have been able to live with it. I can sleep for 4-5 hours mostly.
Please find a way to be referred to Mr Jose Thomas at the SLEEP CLINIC in South Wales. He or his team will help you I'm sure.
I'm sending much love, blessings and you're in my prayers and thoughts. God bless.
We're here for you whenever you need support. Reach out we help.each other when no-one else can understand the hell we live.XX 🙏
I am so sorry you are going through this. And angry that you are suffering at this stage of your life. Are you eligible for Hospice where you are?
Thank you to all you dear sweet people for your kind and informative messages of support. I have been deeply touched and because there were so many I am now replying to you jointly not only with thanks but because of an important development!
I was hospitalised this week with low calcium levels and one of the symptoms of this can be muscle spasms especially in the legs! So my week of desperation was aggravated by the hypoglycaemia. As soon as I had an infusion my legs calmed down and it was miraculous! It explained why I was not responding to the Ropinerole and/ or the Rotigotine patches. I was on the 4mg patches and was resorting to taking two Ropineroles.as well. So far there haven’t been any ill effects from reducing the tablets by half at a time. But it is early days. However I will speak to my doctors at UCLH tomorrow and with my consultant next Monday. I did send them an account of my sufferings plus a video, as advised, and hopefully those may persuade them to let me start to increase the dose as soon as, or if I need to in the future.
So I hope this will help others. Usually low calcium is only an effect from chemotherapy ( as in my case) but I believe other conditions can induce it too. Just bear it in mind if you ever get an intense increase in your symptoms of RLS. Normal readings are 2.5/6. Mine was 1.7. But there are two readings from a blood test I. E calcium and adjusted calcium but I’m not sure which result wa this was for.
Thank you for sharing this with everyone on Health Unlocked. I pray that you get relief from this awful thing we call Restless Legs, a glorious understatement for a horrible condition when it is severe. I hope will be able to be more at peace as you deal with the cancer. I can't give any advice , but you are in very good hands with Sue and Jools. Sending love to a very brave lady.
Thank you. So much.x
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