Hello you lovely people,
Well two weeks ago I thought I’d try krantom instead of starting ropinerole that the Doctor and consultant said I should try. So I bought some online and I’ve been taking around a teaspoon each evening. Thing it’s around 4g.
Anyway- I’ve been getting ringing in my ears and falling asleep at my desk when trying to work. I’m also worried as it’s has opioid qualities and I’m scared of being addicted.
Does anyone know if I need to gradually taper the dose? Or will I be ok just stopping it?
I must say that I think I have really silly trying this , I’m not even sure now that it’s legal in the UK (but bought it from a website based in Uk) . I’m frightened I’ll get into trouble taking this . I was so desperate and not getting help from the medical profession.
I should never have tried it - but not I’m scared of withdrawals and making RLS worse 😞
worry about the future with stage 4 cancer and RLS and ILMD
Withdrawal symptoms rls 
RLS... at an early age now that I look back at symptoms.
rls withdrawal symptoms
Will coming off fluoxetine stop RLS?
Yes you should wean off it. But please do not start ropinirole. It used to be the first line treatment for RLS but no longer is because of the danger of augmentation. Search augmentation on this forum and you will see the horror stories. Instead the first line treatment is gabapentin or pregabalin. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Ask your doctor to prescribe gabapentin.or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
thanks sue. I’m really surprised the GP and consultant said to try the ropinerole. I already take the pregablin, but still get woken up with the rls at 2am. It’s seriously making me suicidal 😞 .
I have tried to book the blood test , but will only let me do this with the consultants letter (so hopefully the will get that soon).
I’m getting so desperate. I’ll gradually reduce the krantom (wish I had never ever started it).
Thanks so much once again for your advice - I really appreciate it x
Reduce the kratom slowly to ensure no bad withdrawal effects but as you've only been on a teaspoon for 2 weeks, it shouldn't be too bad. And yes, it was made illegal in 2015 in the UK.
Treatment of RLS in the UK is barbaric and outdated. I started a campaign last year to get it taught at medical school and during GP training but they refused saying GPs would research and know what to do.That is clearly not happening and GPs are still prescribing and overprescribing dopamine agonists . However, raising ferritin above 100, preferably 200 should be tried before meds and several UK hospitals will do IV iron infusions.
Also ensure you're not on meds that trigger RLS.
Did you make an appointment to see Prof. Walker? If 300mg pregabalin isn't helping your RLS you may need to switch to a low dose opioid if an iron infusion doesn't help.
Hi Jools as you know I am happily enjoying peace in buprenorphine however a doctor I saw this week for another matter asked me if I had tried Sifrol for my RLS . I am serious sick of having these conversations with doctors.
I was thinking of you and you article in the lancet and I thought to myself who on earth would teach the doctors and what would they teach them.
So very few world wide that I would be confident in. If you asked me to name 3 who where actually qualified and that I did not have yo teach first I am not sure I could.
Gosh it is tough.
I agree. In the UK, I have been recommending Prof. Walker as he will consider iron infusions and low dose opioids. I'm shocked he mentioned Ropinirole to Lola. The Mayo algorithm only considers dopamine agonists if pregabalin and gabapentin are contraindicated ( obesity).I did speak at length to the head of Training at the ABN and he agreed knowledge of RLS was very poor but he said there was a shortage of neurologists and most were fully occupied with MS, Parkinsons, epilepsy and tourettes.
We really need to get GPs trained. RLS is not a difficult area & most GPs would learn all they need to in a 3 or 4 hour online course.
It's scandalous that we can't name more than 2 or 3 knowledgeable neurologists in the UK and Australia.
It's an uphill battle.
Did you try it because you’d heard about augmentation with DA’s or something else?
Also wondering if the Pregabalin worked better when you first began taking it?
I completely understand people, including me, making decisions like this. I’ve tried Kratom and others OTC’s. We’re a desperate bunch generally because we have a medical system that is generally ignorant about RLS/PLMD and, worse, are generally defensive when we suggest treatments or explain why something won’t work for us.
It’s been a few years since trying Kratom but as a general rule of thumb, I always taper off slowly if I’ve been taking it for a while, >2 weeks.
hi, well I’ve heard lots about augmentation . On here also - many people have suffered it. I think it’s much more harmful than opoids when it comes to side effects . There is a crack down on opioid prescribing - which I can understand, but if it’s the only thing that works , much less harmful than DAs.
Well so far I’ve been 32 hrs since my last teaspoon of krantom and fingers crossed I’ve had no withdrawals (yet) I’m really hoping I escape.
Yes the pregablin did work first of all, then the menopause came and it all came back. As the years have have gone by - each year the RLs ramps up. Used to work fine with just a little bit of cocodamol. My GPS say that opioids cause RLS, so to come off them. But I know they make RLS better . It’s like banging your head against a brick wall. I’m scared now to even visit the doctor, as they always blame the pregablin and cocodamol and tell me to come off it all 😞