I just wanted to offer an update on my recent visit to Prof Guy Leschziner. I had my 2nd consultation with him last week. I'm having a terrible time coming off of Ropinirole: my symptoms are mostly mental health related, in that I am struggling with severe depression and a total loss of get up and go. I spend 4 days in bed last week with uncontrollable crying. It was just awful
My RLS has increased, but I feel it is manageable with the Therapulse device, and I do feel that the 15 mg of Codeine Phosphate I have been prescribed is also helping the RLS.
Prof Leschziner suggested my severe depression is quite an unusual response to reducing a DA, and that perhaps there is something unique about my epigenetic makeup that is causing this. Whatever the case may be, I'm suffering.
As a treatment plan going forward, I'm to consult with a Psychiatrist to see about getting on Wellbutrin to support my mental health. I look forward to this, and hope it will do the trick.
After my depression is stablised, I will continue to reduce the DA - (I've reduced from 2 mg. to 1. 25 mg). After which point I will go without the DA for a period of 6 weeks to "wash out" my system of this drug.
Above and beyond my own struggles, the thing that I really wanted to mention in this post is the following:
Professor Leschziner is no longer keen on prescribing Buprenorphine for RLS as he mentioned that a red flag has just been posted about this drug, highlighting concerns about the dental damage it is known to cause.
I wanted to mention this, as it might be good for those of us hoping to go on Buprenorphine to be aware of dental damage as a potential roadblock, and to perhaps come prepared with a response. It's curious to me that this is actually not recent news, as Prof Leschziner suggested...but it does indeed seem to be a concern.
He has recommended I go on Targinact after the 6 week washout period. I am nervous as hell about that...and all of it really...because I do think my brain is really unhappy about all of these drugs and it seems to respond to most of them with mood disorders.
Written by
Chocolate123Lab
To view profiles and participate in discussions please or .
Thank you Madlegs1. Yes, I think I'd rather spend more time at the dentist. As Joolsg mentioned below, there are ways of coping with the dental issues. But it alarmed me that this is being used as a reason not to prescribe the opioid.
I am surprised Gu Leschziner is unaware of depression and anhedonia.They are extremely common side effects of coming off Ropinirole and dopamine agonists!. When you take away the pleasure hormone, dopamine, depression is inevitable for many of us!
It does tend to settle as your dopamine receptors get used to having their dopamine hit withdrawn. But it can take months/ over a year.
Perhaps it's because he doesn't see as many RLS patients going through withdrawal.
Dr Andy Berkowski and Dr Mark Buchfuhrer in the USA mention it all the time.
And this website is very aware of it.
Wellbutrin is a safe anti depressant.
And the dental issues are well known and reported on here.
The FDA issued an alert around 2 years ago. They guessed that mouth acid is the reason. However, many taking the patch say that they also had teeth issues.
I am convinced teeth issues are because of 'dry mouth' caused by Buprenorphine.
I advise people to chew gum, use biotene toothpaste and mouth wash.
Targinact is standard treatment and is licensed in the UK for RLS.
It does work for many. However, many report that they suffer 'rebound' RLS symptoms. Targinact is supposed to last 12 hours but it only lasts 5 hours for many. So, if it doesn't cover symptoms- take a lower dose more regularly. Standard dose is 1 tablet every 12 hours. So if that doesn't help once you're off Ropinirole for a month, try 5mg every 6 hours.
My only concern is that Guy Leschziner is recommending a 'washout' period.
I understand why he's doing this. He wants to stabilise your mood/depression. But it's tough getting off Ropinirole without the help of an opioid or cannabis.
I suggest you video your withdrawals. Uk doctors really do not understand how brutal the withdrawals can be. Especially the violent leg jerks and zero sleep.
If you struggle- please contact Dr Leschziner again with the video and the Withdrawal schedule from RLS-UK website.
He needs to realise that depression is VERY common when withdrawing and that most have a tough withdrawal.
Thank you for your replay Joolsg. So appreciate your detailed response, as always.
Yes I was a little surprised that Prof Leschziner counted me out as "unusual" for the severity of depression I was experiencing coming off the DA, although he did say he knew it can be tough.
I was doing really well up until the middle of last week, when I started to notice that day to day things were suddenly quite difficult and I was tripping and dropping things. And then, the full blown depression hit, to the point where I was considering admitting myself to hospital. Sure, this doesn't happen to everyone, but it does happen, regrettably.
According to the book Breath: A New Science of a Lost Art, people can retrain themselves to breath through the nose. At night, this is done by taping your mouth shut. Sounds awful, but apparently it's not that bad and very much helps with things like snoring, and of course dry mouth. Worth a try for anyone on Buprenorphine.
I should mention that I have now got a prescription for medical cannabis via ReLeaf. I'm not sure it's working, but I shall persist and feel better knowing it's in my arsenal.
Incidentally, the follow up session on Releaf was with neurologist Dr. Michal Modestowicz. I thought to myself: Oh great! He'll get it! (wrong). I explained how difficult it was coming off of Ropinirole and he was super condescending. Sort of laughed at me for being a bit over the top I guess? He also suggested that I was really unusual and that a very small percentage of people respond negatively to this drug and that coming off it is not normally a problem.
I suggested that he needs to learn more about RLS and yes, I was pretty frustrated by this point and showed it. Anyway, he said he would no longer consult with me if I was going to be angry, and then he hung up on me...after all of 8 mins. Wow. I followed up with a complaint, and some literature for him to read on RLS and DA's.
So, I can't say I would recommmend Releaf to anyone here....
I am not surprised. The arrogance and ignorance is widespread.
When you feel stronger, write a complaint to both doctors.
Unless they are challenged and corrected, they will continue to mistreat patients.
This is why I am pro legal action.
Depression is EXTREMELY common when you withdraw DOPAMINE.
Most RLS patients experience severe anxiety and depression when going through withdrawal. Some develop DAWS. A well researched consequence of withdrawal from dopamine agonists.
Send this ignorant doctor the research papers on DAWS. He may even read them and improve his limited knowledge.
Can you imagine how other people are treated? A frail eldery person with zero confidence going through Ropinirole withdrawal and being mistreated by these arrogant monsters???
I am FURIOUS.
When will they read the research and listen to patients?
Thank you Joolsg . It is infuriating, and yes, I also cringe at the thought of elderly people going through this. I don't want this to be us, and I don't want it to be others either.
I do wonder about DAWS and if that is what I am experiencing. I had it thought it was something that one goes through AFTER coming of Ropinirole, but perhaps it can happen during the process too.
Anyway, I shall forward your links. I am also considering legal action...but getting out of bed at present feels a monumental task, let alone fighting the good fight.
Oh my gosh this is just awful for you. So much for getting understanding and support from ‘experts’. I do think that depression is very much related to life after DAs. I took my last Ropinirole in early 2023 and still struggle to find pleasure in things I used to. It’s actually only now that I’m putting two and two together. So two years and I’m still not back to normal, although clearly nowhere near as bad as your symptoms.
I saw Prof Leschziner several times, along with his colleague Dr David O’Regan. Both wanted to try me on Targinact (the most awful experience EVER), and send me for psychotherapy. After trying my very best to comply with their many protocols, I finally discovered Buprenorphine through this forum and trekked to Bath to see Dr Robin Fackrell. That’s when everything changed.
I’m worried that Prof L is talking about a Red Flag for Buprenorphine though. Will this filter through to the few doctors actually willing to prescribe it? I’m terrified at the thought of my prescription being denied. Like @joolsg I have zero problem with dental issues. I’ve upped my oral hygiene and my dentist is entirely happy with my teeth.
Claire_1c , you have mentioned to me in the past about discontinuing with Prof Leschziner and going up to see Dr Fackrell. I did actually make an appointment with him, but had to cancel due to work. My work is very last minute, so I feared this would be an on-going concern and felt a locally based Neuro would therefore be best. Perhaps that was a mistake, especially as i just read the summary letter of our consultation where he states that
"Jane has said that coming off the ropinirole has significantly worsened her mood. Certainly, the withdrawal of the ropinirole is probably likely to be contributing to her mood a little".
A little? Okay....
Anyway, the main point of my post was that if he is suggesting that dental issues are why he will be very reluctant to prescribe Buprenorphine, then it might be good for us to mobilise a response, gather data, etc. Because, I agree - it he and potentially others (let's hope not - perhaps there are other things at play for Prof L - we just have no idea what's going on behind the scenes) decide NOT to prescribe this drug, then that would not be good.
He's gone on leave for a couple of weeks I think now. So if I have the wherewithal, I will attempt to take this up with him when he gets back to see how final he is about not prescribing Buprenorphine.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Buprenorphine transition from patch to tablets
Solution!
Buprenorphine, Nausea & Zofran (Ondansetron)
Anxiety brought on by ropinirole withdrawal?
