My Dr. , eventually, agreed to giving me Buprenorphine and I changed from 12 mcg. Fentanyl patch to a 10 mcg Buprenorphine patch . The first night was good with my leg's feeling a bit strange but not restless and I was slightly, hopeful! Then last night ( the 5th !) my leg's started to get painful and that would last for ½ an hour and then relax again. This went on for the next 5 hour's. My question is, does it make a difference changing from 12 mcg. Fentanyl to 10 mcg Buprenorphine or is Buprenorphine stronger than Fentanyl? I am really tired...druggy feeling....but I assume that my body will adjust to a different Opioid? Do I need to have a stronger patch or are pill's better?So many question's! I was on Fentanyl since the lung cancer and Lobectomy which is 6 year's ago now . My leg's and toes get so painful and the pain from the vertebral fracture's and my stomach is worse since stopping the Fentanyl. I would be grateful...again..for any advice.
I hope you ALL have a happy and peaceful year. You have all helped me so much with 'listening ' and advice and it means the world to me to be able to speak to people who know what I'm going through. Thank you...again!
All the best xx
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Danni54
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Your GP has given you the correct dose equivalence.However, the 12mcg fentanyl patch didn't cover your RLS.
It seems Buprenorphine also doesn't cover the RLS and your other pain symptoms are worse.
The 10mcg patch delivers 10mcg an hour over 24 hours. That is 240mcg or 0.24mg a day. A very, very low dose for RLS.
You also are getting breakthrough RLS after 4 or 5 days which is VERY common. The patches just don't last for 7 days. Mist people reapply a new patch every 4 days instead of every 7 days.
Ask your GP to prescribe a new patch every 4 or 5 days. If that completely covers RLS, brilliant. If not, you may have to ask for the higher dose patch 20mcg or 25mcg but you will still find it doesn't last 7 days.
If you're experiencing stomach issues with Buprenorphine, you could start a good probiotic ( Symprove or VSL).
Thank you so much Jools. I don't know what I would do without you and Sue to help me ....and other's! You have been so quick to reply to me . I have been crying this evening because I'm so desperate. The Fentanyl patch ran out early in hot weather so I did think that this patch had run out early....not that it's warm here just now! To have that confirmed was such a relief and I have put another one on. I am going to phone the Surgery in the morning and as well as the Dr. I am going to ask to speak to the In House Pharmacist who spoke to me when I was first prescribed the BuTrans patch and said that I could phone her if there was a problem. My stomach pain is due to multiple operation's on my stomach when I had Endometriosis so I have adhesions, nerve damage , Diverticulitis and a ' massive ' hernia ' ! You can imagine what that's like when painkiller's stop working. When the horrible Pharma Company abruptly stopped Dipipanone and I went into cold turkey for 9 day's, I was in such pain despite the Fentanyl patch so my body knows all about Opioid's! Nothing was put in place to help me through that ! I think when we get to a certain age that the NHS gives up on us ! I may be 70 in my body but my head isn't and I just want to have more than a half life . I loved walking before the misdiagnosis but now.....! I do try to go for shortish walk's but that doesn't help the RLS.
Anyway, I'm chuntering....again ! Trying to keep my mind off the pain. Thank you , again , Jools. You are an 😇! I wish you all the very best and will let you know what happens tomorrow! Danni x
Hi , again, Jools. So....I spoke to 1 of our Dr.s just now and he has prescribed Ropinerole at the lowest dose to take as well as the BuTrans patch. Is that good or bad ? He refused to up the dose of the patch despite the fact that I was , politely, insistent! He is going to phone back next Wednesday. The pain has been better this morning after changing the patch last night and I told him that . I'm so annoyed that Dr.s don't LISTEN to their patient's! I know that this Dr. does not like Opioid's but I know what they do as I've been on them forever and have read up on them so, if they work, then, surely, it's my choice. I'm not stupid! Grrrr!Thank you again, Jools .
Noooo!!! Do NOT take Ropinirole.It is dopamine agonist and WILL cause your RLS to become very severe in time.
RLS isn't taught in the UK and GPs know nothing about the very, very common side effecta of Impulse Control Disorder or drug induced worsening.
As a former lawyer, I suggest you tell your GP that they are supposed to warn you explicitly that there is a very high rate of Impulse Control Disorder ( Gambling, overspending, overeating, hypersexuality). People have lost homes, marriages, jobs on these drugs.
There have been lots of successful court actions against doctors for negligence in failing to warn of ICD. Please tell your GP you won't take these drugs as experts will NOT prescribe them. The rates of ICD and drug induced worsening are too high.
Show your GP the Mayo Clinic Algorithm and the RLS UK website.
If they refuse to accept that the patch doesn't last for 7 days, video yourself on day 1 to 4 and then day 5 onwards to prove the patch runs out.
You could ask them to consider pills.
Also, the average dose for RLS is 1 to 1 5mg. You are on 0.24mg.
Keep asking to speak to them.
Ask your GP to visit the RLSUK website which sets out the dose of Buprenorphine for RLS and explains that opioids do NOT cause addiction or tolerance. And point out to him that, legally, he has already been negligent for failing to warn about Ropinirole!!
Hi again. I'm sooo angry Jools because I told him that I have joined the RLS Society and they did not recommend Ropinirole and that people had had a really bad time taking it but he said it was recommended for RLS , so, I asked whether he had read the Mayo algorithm. No response! Just ignored me! This is what I mean....they just ignore us! Our Dr.s are against Opioid medication and I live in Scotland and from what I have heard, the Scottish government are trying to stop Opioid medication apart from people who are terminally ill . I will phone them again tomorrow and see whether I can get an emergency appointment with one of them. They only gave me 4 patches so I need to do something quickly. Why do we have to battle everything when we are so tired? I have always been a battler and if I hadn't I wouldn't have got through the cancer misdiagnosis but I am getting so exhausted with it all. I will take your advice. I tried so hard this morning to make him listen to me and now I'm in tears again! This is not me, I don't blub but he really upset me this morning. Am off to print out information for them and phone number's and will get my husband to take me down tomorrow as I can't drive any more. Does anybody else have this problem with their Dr.s? Thank you, again, again (!) Jools . I will let you know what happens. All the very best,
I am so, so sorry to hear this Danni.Do you have a close friend or relative you can take along with you?
You should ask for an emergency referral to a sleep clinic or neurologist.
Sadly, very few UK neurologists are knowledgeable about RLS.
However, they are more aware of the very high risk of drug-induced worsening on Ropinirole and the efficacy of low dose opioids.
If you can, send an email with links to the RLS UK website and the NHS and NICE guidance. NICE mentions opioids for refractory RLS, so it is a possibility.
If you can afford to pay privately, it may be an.idea to phone a few local neurologists who treat MS as they are aware of RLS.
Professor Gavin Giovanonni at Bart's prescribes methadone for RLS.
I can't get a face to face appointment with the Dr. but have managed to get a phone appointment for this morning mainly because I insisted! I hate speaking on the phone these days because the cancer damaged my voice box. I'm so shaky I hardly ever use the phone but I have to get them to listen to me but keep calm ! With the new patch on , I managed to sleep for 4 hour's which is a miracle but I still need a slightly stronger patch. Isn't it awful that, even after 4 hour's sleep, we still feel so tired?! I will ask for a referral but I just hope that I get a different Dr. today. Thing's have changed so much with G.P.'s in that we have to wait up to 3 week's if we want to speak to a specific Dr. and it's so difficult getting a face to face appointment. I understand that there are too many people and too few Dr.s and not enough money but we still need to regain faith in our medical profession but I don't think I ever will.
I will let you know what happens Jools. I appreciate your support and advice so much.
I'm so exhausted and when the patch wore off early , the pain from the vertebral fracture's and my stomach has been excruciating and I told the Dr. but I don't think that he believed me . The NHS is on it's knee's but the way patient's are treated by Dr.s and some Consultant's is heartbreaking 💔! I have no faith in our medic's and that's frightening! Will see what happens tomorrow but I am going to contact a Solicitor because I have had enough. The medic's here, are totally responsible for the reason I have been left a wreck and 2 of them have, now, verbally, admitted it and I have now been diagnosed with PTSD because of the cancer fiasco.Sorry, ranting again. I am incredibly grateful to Jools and other's for their help and support. We will see what happens tomorrow!
Danni, I know the legal system in Scotland is slightly different to in England, but there are 2 law firms here who have acted for hundreds of RLS patients who suffered Impulse Control Disorder on Ropinirole and Pramipexole. Doctors have had to pay out a lot of money in compensation for failing to warn their patients.Please do mention that to your doctor. He may think twice about blindly following incorrect NHS notes.
The law firms are Leigh Day ( Angharad Vaughn) and Switalskis (Kimberley Bradfield). They are both shocked at the ignorance of the UK medical Profession as well!
I just spoke to the same Dr. and he is not happy but has agreed to give me 4 patches of 20 mcg Buprenorphine to try but the Chemist driver came today with Ropinirole! I told the Dr. I am not going to take them and he kept saying that NICE guidelines recommend Ropinirole and they were reliable! The head of the Surgery is going to phone me next Wednesday to " discuss thing's further "! At least I managed to keep calm and polite! He is adamant that there aren't any bad effects and not interested in reading what the Mayo Clinic recommends! I did mention the law suit's and asked him to look at the RLS website! Not interested! I will let you know what happens but I'm happier having the higher dose of Buprenorphine . I wish that I could give you a hug Jools but I will send one on the ether ! Thank you 😊! xx
Danni, I despair at the ignorance. I could send your doctor all the evidence that Ropinirole severely worsens RLS and that he can be sued for negligence for failing to warn you explicitly about the very high risk of Impulse Control Disorder, but he sounds arrogant, pig headed and unwilling to listen.Keep a detailed diary and video of how you get on with the 20mcg patches. Send it to your surgery on a weekly basis.
I really, really hope that 2024 is the year we get through to the RCGPs and force them to teach doctors the basics of RLS, including the dangers of dopamine agonists.
Now, our Chemist doesn't stock patches so I MIGHT get them tomorrow or next week! The Dr. hasn't said a thing about Impulse Control Disorder and he is not pleased that I have been researching this ! He knows best because he is " following Nice guidelines " ! Nice have never made mistakes....of course....HA !I will keep a diary and I'm going to ask for a face to face appointment because how can they tell how a patient really feels by talking on the phone?! Covid was /is such a good excuse for not seeing patient's! Mind you....I am pretty sure that the Dr. realised that I have lost patience and I'm angry although I can be coldly controlled! It takes a lot for me to lose my temper but when it goes, it goes and I am very close to that ! And breathe !! It's all so exhausting!
Do you still have severe rls or is yours under control? I really hope so. I am going to print information and do a postal drop to all the Surgeries that I can find and I'm also going to look into Neurologist's and see whether there are any good one's at our hospital.
Take care Jools . I would be full of despair without your help and support and having been in that head space, I don't want to go back there ! The Ropinirole is in my kitchen....unopened...and it won't be opened! All the very, very best, Danni x
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