sleepreviewmag.com/sleep-di...
A useful article on Dopamine Agonists and augmentation by Dr William Ondo.
It will be useful to print out & show your doctors/neurologists, especially those who don't understand the trauma of augmentation and withdrawal from DAs.
Excellent Joolsg… thank you
Dear Jools,I've read the article. I wish that all GPs would read this, to get a better understanding of the condition, in particular augmentation from taking DAs. My GP barely understands the process, which is why I was told to come off Pramipexole without reducing the dose slowly.
There is a reluctance with UK doctors to read anything which comes from research from the US. They stick steadfastly to NHS and NICE guidelines, and I despair that they even adhere to those. The lack of knowledge or interest is staggering. One GP in the practice told me that I know far more about RLS than she does, but then won't be open minded about reading the latest research outside of the UK.
I've decided I will send it by post, then they can't refuse to accept the information. I will do a covering letter, and say it could be useful to them if they have other patients with RLS . I can only hope that someone will read it, and LEARN what's happening in the wider world with reference to treatment of RLS and especially augmentation, and also the relevance of ferritin levels, and lack of brain iron. They look at me with incredulity when I mention brain iron levels, and have no idea what I'm talking about. Then Im told in a patronising way, 'please leave the science to us!'
Thanks so much for the article.
Sadly Penny, nearly every member of this forum has had to become a 'patient expert' in RLS because it isn't taught at medical school, during GP training or Neurology training.It is a medical scandal.
Jools, I would just like to mention something about opioids that affects me, and wonder if it affects others.My daughter pointed out to me that shortly after taking oxycodone I become very 'chatty' and animated. This flows over into lengthy texts. I've realised that this is true, as you can see yourself with my posts etc. I usually only post after I've taken medication, as so tired at other times.
I hope that I haven't bored anyone with my long replies, or monologues as my daughter calls them. I do seem to get carried away, and will try to be more circumspect in the future. Apologies if this is the case with anyone I have replied to.
You have nothing to apologise for Penny. Everyone with RLS needs to be heard on here because our doctors don't listen. (Except for a handful).Interesting that oxycodone gives you energy and makes you chatty, but as you mention, it's probably because you are so tired from RLS the rest of the time.
So true Joolsg. You would think that medical professionals should know this information--at least have access to this information. Sadly Penny I live in the US and have given this same information to my neurologist and he doesn't seem to care! Sad but true. He just looks at me when I try to explain DAWS to him and tell him that I am referencing information @ John Hoskins Universityand other well known United States Universities. I have provided him information from Mayo Clinic on the treatment for RLS and he still doesn't listen or accept the information I try to provide him. I am going to Mayo Clinic /Rochester Minnesota Tuesday with high hopes that their professional doctors there that have written the new standards will finally treat my RLS adequately. I am seeing doctors in the same department that wrote the Mayo Clinic guidelines. I will report when I get back! But finally after a very long time--I am hopeful!
Hope it goes well with your appointment. Good luck.
My neurologist admitted defeat when I educated him about certain aspects of rls. He admitted that I knew more than him ! Found a brilliant neurologist in Bath, privately. They do exist fortunately.
That's so good to hear. Do send his name to Kaarina, the administrator of this forum. She keeps a list of recommended neurologists.
It's always good to hear about a neurologist who understands and can treat RLS. I'm hoping to make an appointment with Dr Walker from London, who is also an expert on RLS. He works for the NHS, but has a private clinic. I'm hoping to have an appointment by video link if possible.
Recommend Dr Robin Fackrell at The Open Circle Hospital Bath. Good luck.
Thank you
Thanks for the link.
Very informative. I wish we could magically insert it into every medical graduate's brain.
I love the way they emphasise first looking at iron levels, then lifestyle aspects and then triggers.
Only after those three approaches, do they reach for the medical cabinet.
Thanks, again ,Joolsg. 💚🍀
The problem is that many people with RLS appear to have okay iron levels. It's only if the MRI mentioned past week on HU. that shows the specific area of the brain that iron isn't reaching, is offered, that medics will detect the lack of iron.
True. Kakally mentioned this brain scan & said that if all RLS patients had this after 1st appointment, then iron infusions could be offered immediately to those with low brain iron. Others could start pregabalin. I think it would only be useful if the patient had not been on DAs.I do wonder if one of the reasons iron doesn't help many is because dopamine agonists have damaged the dopamine receptors. We then cannot absorb iron in the brain effectively.
Another important reason not to prescribe DAs. Many women develop RLS in pregnancy and it never goes away. We were probably anaemic and lost brain iron. DAs cause permanent damage for many of us so iron infusions are then ineffective.
sciencedirect.com/science/a...
Thanks joolsg for explaining to others that hadn't read the Kakally post.I am wondering whether to ask my neuro if I can have this MRI. Then maybe ... if iron infusions were needed and allowed, I could stop taking Buprenorohine?
🤔
I suspect that even if the scan shows an iron deficiency, infusions will still only work for around 40-60% because of the damaged dopamine receptors. I have no idea why infusions haven't worked for so many of us that developed RLS in pregnancy. I believe it's because our dopamine receptors cannnot take up/ work with iron.I honestly think dopaminergic drugs are far more dangerous than anyone envisaged.
The initial 12 week trial was outstandingly positive. RLS improvement was outstanding. Those of us who've taken these drugs remember how miraculous they were in the beginning.
The doctors who were around at the time, like Dr Earley, are now aware that they unleashed a beast and are very wary about new drugs, in case they cause the same damage that dopaminergic drugs have caused.
There are still people who are overspending, gambling, compulsively spending and eating and they and their doctors don't know it's caused by these drugs.
I'm TEAM BERKOWSKI on this. They shouldn't be prescribed.
Iron infusions are a bit of a lottery but we should have the opportunity to see if they help us.
AbsolutelyThank you Joolsg
A nice summary! I especially liked that Dr. Shalini Paruthi also has RLS. I've added her to my recommended doctors list.
Cheers.Useful.
thank you for sharing this info!
Thank you
Thanks for posting the article by Dr. Ondo. I have a particular interest in this article because of have an appointment with Dr. Ondo in Houston, TX in September. Part of my reason for seeing him is to map out a transition off Sinemet (carbidopa-levodopa), a dopamine agonist, and to seek his advice on what drug to transition to. My PCP had me transition off pramipexole to Sinemet which was a mistake, so I decided to seek advice from one of the leading experts on RLS. It's a 6 hour drive from my home in Arlington (between Dallas and Ft. Worth) to Houston Methodist Hospital, so I plan to take an early flight (1 hour) to Houston, see Dr. Ondo at a 1 pm appointment and then fly back to DFW airport in late afternoon. After my initial in-person appointment, follow-up appointments can be done via computer (zoom, face time etc). Again thanks for posting.
He is a really excellent doctor and will help you taper off Sinemet. It will be well worth the journey. let us know what he suggests and how you get on. Good luck.
Hi Joolsg
Am returning back to this with a query.
Regarding Feritin levels being under 75 to suggest low iron levels in certain areas of the brain, mentioned in this article, mine are over 100.
Does that mean that iron infusions would not be necessary for me?
My neuro said that I would need to reduce my ferritin to qualify for an iron infusion.
I suppose what I'm really saying is .... If my Ferritin us over 100 then my brain is getting full coverage?
Not necessarily. With this foul disease, we are all different. Dr Buchfuhrer mentions that 60% see dramatic improvement with iron infusions. However, we seem to need different levels. I know Kakally needs her serum ferritin to be above 300 to see improvement.
I had serum ferritin of 145 but St George's agreed to an iron infusion anyway as they felt the scientific evidence was 'compelling'. My serum ferritin increased to 785. No difference to my RLS.
That could be because my RLS is not caused by low brain iron. Or that my dopamine receptors are permanently damaged by decades on high DAs so they don't take up iron in the brain. Or my RLS is caused by spinal scarring and not low brain iron.
It's all a complete mystery and iron infusions are a bit of a lottery.
All I do know is that many diseases are made worse by low serum ferritin and most doctors don't understand this.
There are several UK hospitals that will carry out iron infusions even if your serum ferritin is above 75 or 100. St George's is one of them. The Royal Cornwall in Truro is another.
I would push for an infusion. You could be in the 60% and you might need levels above 300 like Kakally.
Thanks for that Jools I will.I have a sleep study with my neuro coming up in london. I'm not actually sure why now. I have the meds to cover my RSL.
Would the sleep study involve me coming off the Bup' for the night? I don't know. I will ask the question though before it's arranged. And mention the iron thing and include links in the email.
Thanks again
I don't know. Dr Jose Thomas says that he knew nothing about RLS. He was a respiratory sleep specialist. He soon realised that the majority of his patients had RLS. So he started to teach himself about it & is the most knowledgeable UK doctor I've encountered. He stopped prescribing DAs 6 years ago and helps people off them. He discovered that many RLS patients benefit from a CPAP machine, and treating sleep apnoea helps their RLS.So, if they discover you have sleep apnoea, your RLS could be improved more with a CPAP and you might even be able to reduce your Buprenorphine dose.
Hope it goes well, let us know what they say.
Will do Jools, thanks for that 
This is an issue with many many medications. Dr.s are unfortunately not taught about the dangers of the meds that they are prescribing and I am currently stuck in that loop of withdrawal and more physically dependent medication. I'm in Canada and the Dr.s don't even want to hear it and now I'm considered a nut. They did this to me and now they have hung me out to dry.
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