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.
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Chocolate123Lab
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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.
Totally understand.I had never experienced anxiety or depression ever in my life. Until I went through withdrawal. Reducing caused severe RLS and lack of sleep. And that caused anxiety/depression.
Yes, the worst bit is the 2 weeks after you drop the last dose. But it can definitely happen at ANY stage.
Your brain has been flooded with a drug which increases dopamine and dopamine uptake in the brain. Dopamine is the pleasure hormone.
It's what drives Impulse Control Disorder AND when you take it away- of course the brain then loses the pleasure hormone and takes time to recover.
I also had severe PTSD for a year afger withdrawal. It is torture. Most people who have survived torture will experience depression/PTSD.
If just one top doctor experienced augmentation/ICD and withdrawal- they would be shouting from the roof tops about the dangers of these drugs.
I agree with Claire_c.
It may be time to see Dr Fackrell in Bath.
Or you could insist Dr Leschziner prescribes low dose buprenorphine to allow you to get off Ropinirole.
One possible reason he has suggested Targinact could be because buprenorphine is also known to trigger depression in some patients.
Just a comment on dry mouth. I have been taping my mouth before sleep for about a year now, and I have to say that it's worked very well for me. I used to periodically wake up with a start, unable to breathe, which was very frightening. I haven't had a single episode of this since mouth taping, and no dry mouth in the morning. Taping sounds like a horrible idea, and I admit that I didn't like the thought of it, but it's only a tiny bit of medical paper tape over the centre of the top and bottom lip. It now feels totally normal to me, and I have had no adverse effects.
Hello Chocolate 123Lab. So sorry that you are having such an awful time of it. I posted on here a cannabis clinic recommended by my consultant Dr Christopher Murphy. curaleafclinic.com who can treat RLS, they are very thorough and go through your symptoms, various forms to complete on line before your initial consult with a specialist medical professional. There are very specific types of Cannabis to treat RLS and that’s what they prescribe not any old run of the mill cannabis. Don’t know about the clinic you signed up with and how detailed their research into your condition and the other medication you are taking but Curaleaf do contact your GP to check your medical history, of course only with your consent.
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.
See my response above.Buprenorphine will certainly ease the withdrawals.
I always suggest adding 0.1mg Buprenorphine at each 0.25mg Ropinirole reduction. And keep to 0.4mg Buprenorphine until 4 weeks after the last Ropinirole pill. That way you don't take more Buprenorphine than needed.
There are lots of side effects, but they can be resolved.
Depression and anxiety can be helped with wellbutrin(depression) or adding a small dose pregabalin(anxiety)
Constipation can be resolved by taking 3 magnesium pills and lots of green veg/brassica/chia seeds.
Nausea is helped with cannabis or zofran.
Mouth dryness can be helped by using products for Sjogrens ( toothpaste/mouthwash).
Guy Leschziner may prescribe it if you explain that the forum members have not experienced tooth decay/crumbling.
Thank you Joolsg. If I can get a prescription for Buprenorphrine, then I will. In the meantime, I'm trying to get in to see a psychiatrist about Wellbutrin. So far no response, but will post in a separate thread asking for recommendations if the one I've written doesn't respond.
And, interesting what you said in the previous post about Buprenorphine potentially causing depression. That's not great.
Hopefully the Wellbutrin will do the trick. I am getting a little worried about what it will be like when I totally come off of Ropinirole, as if I start to feel any worse than I presently do, then..I think I'm really going to be in trouble. I can totally appreciate you suffering with PTSD. Makes complete sense.
Prof Leschziner may suggest you see Dr David O'Regan, who is a psychiatrist who I think is able to prescribe Wellbutrin. I will DM you with his contact details.
It is hard to get Wellbutrin as it is usually only prescribed for smoking cessation so if you can't get it ask for trazodone.
That's horrible about everything that Dr. Leschziner said but it especially bothers me about the 6 week washout period. That is so ridiculous to cause unnecessary suffering for no good reason.
Dr Fackrell does zoom appointments I believe although I don't know if he needs to see you first.
It was interesting to read your post. About a month ago, my adult son, an addict, started weaning off Suboxone, as he had a tooth break, and he learned that this is a side affect of Suboxone, which he has been on for 2 years. I wonder how many opioid drugs might have this same danger? It certainly makes one think twice before starting a drug!
I understand your problem. It took me an entire year to come off ropinirole. I thought jumping in front of a truck on the expressway would be better. I couldn't cope with various opioid drugs until I tried buprenorphine. I have always had dental problems so I am not sure how much this drug contributes to my problem. However, I now feel I have my life back. I am sure one day you will feel better.
Thanks for sharing DogBella. Buprenorphine does seem to be the answer for so many. So glad you managed to finally get off the dreaded ropinirole. How did you manange to cope with the worst of the symptoms during that year?
It truly was not easy. I tried various opioid drugs but each made me nauseous. I really didn't know it I would make it. I had an exceptional NP who guided me and without her I am not sure I could have done it. Keep your faith that life can be better and little by little you will see improvement. I lost over 40 lbs during the process as I could not sleep nor eat but today I feel much better. I am not rid of my disease but it is now manageable.
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