Hello again, it has been awhile because of being too busy or depressed to get around to posting anything. Anyway, 3 years on and no respite from RLS, my parents have both died now and I am coping with severe health problems. I have been taking Ropinerol for almost 17 years now, and have managed to stay on the same dosage for 2 years now of 2mg twice a day (I was on 2mg x3 per day previously) Because of the side effects ie; swelling of limbs, nausea, who knows what else. I also have M.E, and clinical depression, oh and osteo arthritis. I am very heavy as well now despite attempts at dieting. I have decided to wean off the D As therefore, to see if I can find some other way of dealing with this relentless plague. Getting to see my GP is a problem in itself, worse since Covid! It entails filling out forms online, then waiting for at least 2 weeks before a possible phone consultation. I know I will need help to wean off my meds, as it has been a long time, but have tried Pramipexole starting on a low dose! That did not work at the time and I ended up continuing the Requip. So here I am today about to try again. I keep looking at the latest research, hoping to find some glimmer of a cure etc. At least this forum is a place where I can share with fellow sufferers, and try different things. I did have a Locum GP suggest leg wraps, and insisted they work................. Obviously had no knowledge of the nature of RLS. Lovely person but not a lot of help in this instance. My own GP said it is not a common complaint, and not much known about treatment.
An update: Hello again, it has been... - Restless Legs Syn...
An update
Sorry, firstly I can't believe the problems some people have trying to access a GP. I can usually ring and get a call back the same day! It's actually better than before covid 19.
It's amazing you've been on ropinirole for so long.
I think you need to get off it and do NOT replace it with another dopamine agonist, i.e. pramipexole or rotigotine.
Your GP isn't correct, RLS is quite common and if he says not much is known about treatment this means HE doesn't know about treatment. There's plenty of information available.
If he doesn't know much about it, he's supposed to inform himself. I know this as the Royal College of GPs have said this.
All he has to do really is look up the UK national guidelines for RLS. The quidance is for GPs and is called a Clinical Knowledge Summary. It is published by the National Institute for Heakth and Care Excellence (NICE).
You can tell your GP to read it.
Here is a link
cks.nice.org.uk/topics/rest...
Particularly see the section on "augmentation" which I believe applies to you.
The advice for dealing with augmentation is this
1) have blood tests for iron levels and if safe and possibly helpful then undertake iron therapy.
If your ferritin level is less than 75 then take iron tablets
If it's between 76 and 100 then an IV iron infusion may be needed
If necessary there are other links I can give you about iron therapy
NOTE you do not need a prescription for iron tablets.
2) Identify any exacerbating factors making your RLS worse and if possible eliminate them.
This may be other medicines you're taking including antidepressants, antiemetics, sedating antihistamines, antacids and others. Obviously if you're being prescribed any of these then you'll have to discuss this with your GP and eutger stop them or dwutchh to something else if possible.
There are other non-drug things that can make RLS worse.
3) replace the dopamine agonist with an alpha 2 delta ligand either pregabalin or gabapentin.
The final thing I suggest you do is to take some control over your RLS and learn what self-care you can possibly carry out. To do this you need to find as much information as you can about it, particularly in your situation.
You can do this be reading other people posts, I hace replied only earlier today to another person who's been taking a dopamine agonist for years. Same information.
Hi Manerva, I appreciate your comments re. Research has always been my strong point as I want to arm myself with as much info as possible. I have read others comments and drawn conclusions along the way too. I have suffered RLS since age 10 or thereabouts, only officially diagnosed by a Neuroligist in 2004, who subsequently prescribed Requip. I weaned off the antidepressants because they conflicted. My wonderful GP unfortunately moved to Australia, so I lost out. He had a relation who suffered with RLS so understood my problem. He also knew about augmentation, and gave me good advice about going 24hrs without drugs once per week which resets the dose. I think that is the reason I have been on Requip for 17 years and not increased. Unfortunately my weight has ballooned due to oedema in part. I also had Cancer and subsequent drug therapy over several years. My thyroid is borderline low, so not on meds for that. I am careful about what J take in terms of medication although I take Gentle Ferritin now as my test results were low. I used to have B12 injections but that was replaced with tabs according to new guidelines (designed to save money) in my opinion. My GP refuses to prescribe any med not registered for RLS.........
I support your view that the evidence is important. If your doctor is being "uncooperative" then you can attempt to educate them with evidence.
I am presuming you live in the UK.
In which case you can refer them to the NICE CKS. This is evidence based guidelines published by an NHS organisation.
It isn't mandatory for a GP to follow this guidance, but frankly, they would be stupid not to!
If you look at the page on augmentation it clearly states what a doctor should do,
Refusing to prescribe something which isn't "registered" for RLS. In the UK, the correct term is "licensed".
The alternative medications RECOMMENDED for RLS are not livensed for RLS in the UK, but they can be prescribed for RLS "off label".
There is no excuse for refusing to prescribe an alpha 2 delta ligand for RLS.
It's not at all unusual for GPs to know little about RLS, but they are duty bound that if a patient presents with a chronic condition that they take steps to inform themselves.
I imagine your GP to be an older person, which is no excuse for failing to perform as they should and show such little regard for any patient's needs.
I suggest you change doctors.
Did you mean If your ferritin level is less than 75 then an IV iron infusion may be needed, if it's between 76 and 100 then take iron tablets?
I wrote
If your ferritin level is less than 75 then take iron tablets
If it's between 76 and 100 then an IV iron infusion may be needed
That's exactly what I meant to write as per recommendations.
I thought the lower your ferritin level, the harder it was to bring it up to over 100, an thus an iron infusion would be necessary whereas if it was closer to 100 iron tablets might be all that was necessary.
You have it the wrong way round.
The key to this is ORAL vs IV infusion.
In simple terms, the lower the ferritin level the easier it is to raise it using oral iron because the hormone, hepcidin, doesn't restrict its absorption from the intestines as much.
As ferritn gets higher, the more hepcidin will restrict its absorption from the intestines . This may get to the degree that it becomes pointless taking iron orally as little or none of it will be absorbed.
IV iron bypasses this absorption restriction entirely as iron goes directly into the blood.
OK - Thanks for clearing up my confusion!
One more step, Vitamin D suppresses hepcidin. It is certainly worth checking. I don't have the numbers, but they are usually on the test.
pubmed.ncbi.nlm.nih.gov/242...
" These data show that vitamin D is a potent regulator of the hepcidin-ferroportin axis in humans and highlight a potential new strategy for the management of anemia in patients with low vitamin D and/or CKD."
do you take magnesium? it will help but takes a while to build up. I also use essential oil combo on my legs and pulse points at bedtime. also cream with hemp helps tremendously! and it's legal. I only take 2mg requip at bedtime
I take a multi vitamin fir elderly women by Zipvit, also Coenzyme Q10, Gentle Ferritin more recently because mine is low. Omega3 fish oil capsules, B12 tabs. I take 2 mg Requip during the day and another at bedtime. If I can work through RLS during the day without meds I try to. Gabapentin was tried years ago with no effect.
I tried Gabapentin twice with my neurologist, to NO effect, except that it made my hair shed very noticeably both times!! There are lots of posts about this side effect. Be careful!
You can do this. Weaning off your DA is hard. I am one week out and still feel pretty miserable BUT my daytime symptoms are gone! I did have to get Tramadol and Oxycodone to help with the withdrawal. I need those at night or I will go crazy I am seeing. But each day gets better than the day before even if its barely measurable. Keep advocating for yourself and keep looking for a GP that will read the latest research on RLS (that you may even have to hand to them yourself.)
wishing you some peaceful nights. Reading about other people's experiences has helped me enormously through this process so don't hesitate even to vent- someone is out there listening closely!!
In the end, it's a case of choosing your suffering! either suffer with RLS or side affects from the meds you take for it! I am banking on a higher source, but it is future.
I have Rheumatoid Arthritis and I feel the same about choosing which is the least suffering. The problem is that it takes time to work out which is which. 🙂
Yes it is complicated for sure.
How are you holding up Elainemarie???
Hi Todge, another disturbed night as you can tell! Been up since 2.30 doing chores quietly. I am trying to get off these drugs gradually but it is not going to be possible for a while yet. I have been on them 17yrs or more. I have so much fluid in my legs n arms, caused by the D.As cannot seem to lose it. I could take more drugs for that but I think it's better to use diet. The high protein diet looks worth trying, because it tends to shed water and help depression! Thanks for asking!
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