update on R.L.S

[auldreekie18]

where can you find the latest information on R.L.S latest drugs and treatments around the world.

[Madlegs1]

Hitch a ride on an iron molecule into Manervas brain. !!🤔

[Hidden]

Hi,

In response, I'm putting what you write in all your posts together. I hope that's OK.

Your predicament is very common and it's called "dopaminergic augmentation".

Augmentation is a condition caused by long term (or in some cases short term) use of a Dopamine Agonist (DA) for RLS. There are three DAs usd for treating RLS. Rotigotine (commonly known as Neupro), ropinirole (known under various names e.g. Requip) and pramipexole (known under various names e.g. Mirapex).

Mirapex IS pramipexole.

I'm only guessing but it may be that you live in the UK. UK doctors can no longer prescribe Requip or Mirapex, they have to write Ropinirole or Pramipexole. It's then up to a pharmacy to decide what brand to give you. It will be the cheapest!

ALL DAs cause augmentation and of the three, pramipexole is the worst. WHEN it occurs varies between individuals but the higher the dose and the longer you take it, the more likely it will ocur.

Since you're taking the maximum dose 540mcg (0.75mg) of pramipexole, it seems almost cetrtain that you do have augmentation.

Various measures can be taken to treat augmentation, they should ALL be considered and they consist of three things.

1) Blood tests for iron deficiency and commencement of iron therapy as appropriate.

2) Identification of any individual factors aggravating your RLS, i.e. things that might be making it worse. Then avoiding them.

3) A change of medication (if necessary).

Both 1) and 2) can result in the elimination of the need for any medication. However, this for 1) is not always the case and for 2) not often the case.

Iron therapy

Brain Iron Deficiency (BID) is thought to be the main cause of RLS. Iron then is a treatment in the sense that it addresses the cause., like antibiotics address bacteria.

The blood tests should include, serum iron, transferrin saturation (TSAT) and ferritin. Haemohglobin is also a good idea and also vitamin B12/folate, vitamin D and magnesium.

Low serum iron and TSAT (<16%) may indicate Iron Deficiency Anaemia (IDA). If haemoglobin (Hb) is low as well then this indicates IDA. If they're low and Hb is OK this may be blood iron deficiency without anaemia.

If the first two are OK then if the ferritin level is less than 75ng/mL for people with RLS indicates a need for iron therapy with the aim of raising the ferritin level. NOTE a normal level of ferritin for anybody who does not have RLS is anything above 12ng/mL. Being told that your ferrtitin is "normal" or "OK" is of no help whatsoever.

A simple rule is that if ferritin is less than 75ug/mL then start an oral iron supplement , if it's >75 but <100 then pursue an IV iron infusion.

People often ignore this potentially effective treatment because it can take a long time for iron therapy to have any effect and they need something more immediate,i.e. medication. This is fine, but don't ignore it.

It's also often ignored because doctors don't mention it.

Here' some more information

sciencedirect.com/science/a...

Incidently, a high ferritn ei.e. above "normal" may be an indicator of inflammation.

Aggravating factors (exacerbating factors or "triggers")

Identifying any of these and eliminating them if possible can help.

Alcohol, sugar, smoking (tobacco) and caffeine are commonly known triggers (same day effect).

The main aggravating factors which are almost universal are other medications.

There is a long list of these which can be found elsewhere. The main ones are antidepressants, sedating antihistamines and antacids.

Again this is often ignored, for the same reasons.

There are a whole host of other things which can aggravate RLS which vary very much between individuals. Diet is a signficant factor for many and there is information about this elsewhere. Inflammation is another, as well as peripheral neuropathy

I'm sure you'll get many suggestion about diet which is very individual and if you do, I hope you don't find it too confusing.

It's not really in a doctors province to discuss such things.

Medications.

Augmentation is caused by taking a DA e.g. pramipexole. The main treatment then is to stop taking the DA.

Some people stop taking the DA and have a "washout" period i.e. when they're taking no medication at all. The idea of this is to see what the RLS "baseline" is.

I don't think many people recommend this any more. After stopping a DA due to augmentation you should find your RLS gets significantly better, but it won't have magically gone away. There is no cure.

It's helpful then to to identify a replacement medication and to start this BEFORE stopping the DA.

The standard "first line" alternatives to the DAs for RLS are the alpha 2 delta ligands, either pregabalin or gabapentin. Thes are now recommended as the first treatment for RLS . DAs are NOT recommended.

see this link

pubmed.ncbi.nlm.nih.gov/274...

The standard "second line" alternatives are opioids usually oxycodone, methadone or buprenorphine.

If you live in the UK this link will be helpful, you can discuss the content with your doctor.

cks.nice.org.uk/topics/rest...

If you don't live in the UK then you will be unable to access this site.

The most up to date (Dec 2020) information on the medical treatment of RLS as far as I'm aware, is the following

mayoclinicproceedings.org/a...

This is also up to date (Sept 2020)

sciencedirect.com/science/a...!

Most of the best informative overviews of RLS tend to be quite technical as they're not really aimed at sufferers, but heres' a few you may find interesting.

uptodate.com/contents/treat...

A bit dated

ncbi.nlm.nih.gov/pmc/articl...

A warning

If as I hope you do, decide to stop taking the DA then please be aware.

One - you must NOT do this suddenly, this is potentially very dangerous.

Two - in order to avoid severe and potentially extreme long lasting withdrawal effects from the drug it is best to wean off the drug SLOWLY, i.e. reducing the daily dose in small steps over relatively long periods of time.

A suggested withdrawal schedule for pramipexole is to reduce the dose in steps of 44mcg no less than once every two weeks. i.e. half a 88mcg tablet.

Example if currently taking 540mcg a day which is equivalent to SIX 88mcg tablets

then take 5 and half tablets for 2 weeks

then 5 tablets for 2 weeks

then 4 and a half

etc.

I hope this answers all your queries, but I'm sure you will have more.

[Munroist in reply to Hidden]

Hi Manerva, I have seen you write tens and maybe hundreds of very carefully worded responses to people on this forum for which you deserve a medal or two, especially as you take care to respond to their particular need and problems rather than just give a generic response. I also note that many of them are very similar, not surprisingly as the background information won't change much so I wonder if it's worth creating a pinned post for people new to RLS or just joining the forum which outlines much of what you've said below, the latest research, the standard advice on iron, alpha-2-delta-ligands,dopamine agonists, opioids and diet etc. I feel it could let people explore the issue and inform themselves and take some of the load off you. It's possibly a contentious suggestion as strictly speaking it would be your opinion if you authored it although it might be possible to get rls-uk.org to endorse it. I am on another facebook group where I see so many people start with "..I'm new to RLS and and I don't know where to begin .." and the guidance while mostly sympathetic is pretty patchy so I would love to be able to point people to some really good solid and uncontentious advice which they can use to decide how to treat their own condition and work with their own doctors better

[Hidden in reply to Munroist]

I think that's up to RLS-UK really. I like writing though, (sometimes)

[Kaarina Administrator in reply to Hidden]

You are most welcome to contact Julian Spinks, the Chair of RLS-UK should you wish to discuss this. Email: [e-mail]

[Hidden in reply to Kaarina]

Thanks, I'll think about it.

The RESPONSIBILITY, though.

[TheThirdDoctor in reply to Hidden]

Manerva, I would like to second Muroist's nomination for an award to you. It is just great to see good evidence-based material posted to this site as ammunition to load up when talking to the primary care doctor/GP whose response to me when I said alpha 2 delta ligands was "I don't know what those are...". She also admitted that the DAs were of limited success in her experience. It would be great to see a curated pinned page somewhere with all this information immediately available for those of us, like myself, who have RLS and just followed the doctors advice for years without investigating whether that advice was accurate, appropriate, or up to date.

[WideBody in reply to TheThirdDoctor]

I honestly don’t know how Manerva can find the time. He is so prolific I am beginning to think he is a A.I. bot. Give him the Medal. Another post saved!

[Hidden in reply to WideBody]

I do have a particular problem when I go on websites that uses "Captcha", you know, the "I am not a robot"thing.

However, it's usually because I can't see the pictures properly or don't understand what it's asking me to see.

Good AI's wouldn't have any problem with that anyway.

There is of course the "Turing test". This is a method of inquiry in artificial intelligence (AI) for determining whether or not a computer is capable of thinking like a human being.

searchenterpriseai.techtarg...

The story of Alan Turing is very sad. If you don't know it. He worked for British Intelligence : Code breakers during WWII. Top Secret. So Top Secret that even after the war (Partly because of the "cold war") he wasn't allowed to talk about what he did to anyone.

This was a shame, because until this restriction was lifted, it was claimed in history books that the first ever digital computer was built somewhere else. In fact, it wasn't. Turing built one.

Further, he was homesexual which was illegal at the time. Arrested for commiting an "indecent act", he was given a choice of prison or hormone treatment (chemical castration). A very unhappy man who commited suicide.

If you haven't seen it, see the movie "The Imitation Game".

What was I writing about?

[WideBody in reply to Hidden]

I have been a computer/MIS/IT professional for many decades, but I wasn’t alive at the same time as Turing. I did meet personally meet Grace Hopper. At the talk she handed out approximately 12 inches of wire, the length light travels in a nano second.

I think that was the 80’s, early 80’s. But we could also discuss Charles Babbage and Ada Lovelace.

It’s nice to think about things other than RLS.

[Hidden in reply to WideBody]

All names I'm familiar with.

Turing was 1940s. I was 3 when he died, but never met him!!!!!!

Babbage, I believe invented a mechanical computer and Lovelace followed in his footsteps.

The oldest known mechanical analogue computer, of course, puts them all in the shade. The Antikythera mechanism is dated as being between 150 and 205 BC.

What on earth is a quantum computer, it can be zero and one at the same time?

If I googled quantum com,puter on a quantum computer will it answer "I'm not sure".

[WideBody in reply to Hidden]

I hope to live long enough to see and experience Quantum Supremacy. I mean more than a few qubits. Shor’s algorithm requires approximately 4000 qubits IIRC. IBM’s Q-experience is 64 qubits. D-wave talks of 512 qbits, but there are questions about the qubits.

Even better is to live long enough for quantum computers to solve Wilkes-Ekbom disease.

[Hidden in reply to WideBody]

I remember as an electronics student being shown a little black thing in the late1960s about the size of a match head and was told it was an amplifier. I thought of my transistorised amplifier at home, the size of a large book and was amazed.

I can't wait to get a home quantum computer or even a molecular one.

"Dear, have you seen my computer?"

"No dear it wasn't on your desk when I dusted it."

[Ebi1909]

The latest document was just released in July 2021:

mayoclinicproceedings.org/a...

[Hidden in reply to Ebi1909]

You're quite right, but if you look at the blue part at the top it says 2020.12.026 which I've misinterpreted.

Note that my link and yours are to the exact same document.

[Irmajs]

A lot of information can be found here: rls.org/