Wondering if anyone can help or has experience with the situation I am in. I would be really grateful for some advice.
I have had RLS since my mid 20s and it has slowly gotten worse. I am now 35 and have tried a number of different medications one being ropinirole which I have successfully weaned myself off over 5 months. Using ferrous fumarate 322mg, I have boosted my ferritin from 42 to 95 but I still get debilitating RLS symptoms.
I managed to get a neurologist referral and convince her that an iron infusion would be good to try. I did this by sending her all the information that I had including the Mayo algorithm. She has been unsuccessfully trying to get me one since January and I can only assume that the hospital is not allowing her request.
I have a neurologist appointment tomorrow with her and I was wondering if anyone had any advice on how to convince the hospital to give me an iron infusion? I am really hoping that with my ferritin optimised, I will have a chance of being med free.
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I applaud your success in getting off ropinirole, so are you currently RLS med free? Are you taking any other prescribed or OTC meds for anything as many can trigger or exacerbate RLS?
In most UK NHS Trust areas it's very difficult to get an iron infusion unless you are diagnosed with iron deficiency anaemia. I remember that Joolsg referenced a few hospitals where it had been possible and also somewhere in London that might do it privately.
However, with your ferritin as it is, you might need a gabapentinoid or low dose opioid; but whatever happens don't let anyone put you back on ropinirole or on to pramipexole or rotigotine.
I am on pregabalin 200mg, still having symptoms. Not as bad as when I was on Ropinirole though. I know I can go up on the dose to a recommended max of 450mg but it just seems a shame to be on meds for the rest of my life (currently 35yrs old) when I’ve a chance of being med free.
I'm lucky enough never to have been on a DA (or other RLS meds) and always having a good (200-300 odd) ferritin, so combining magnesium with some care over other medications and some care over diet am RLS med (and symptoms) free. (I am on daily meds for high BP etc after a mini stroke. But then I'm 71).
Sorry to say this but chances are good you will be on medicines for the rest of your like. Only up to 60% have their RLS improved by raising their ferritin and only somehave their RLS completely stopped.
On the pregabalin, you might find if raising your ferritin doesn't work that increasing your pregabalin by only 25 mg may stop your symptoms.
I totally agree with your view that you should try an iron infusion before embarking on a lifetime regime of powerful drugs which often have side effects. A 60% success rate is still pretty good odds. I'm in the same boat, albeit my RLS started later in life in my late 50's I've tried pregabalin but didn't like it and I'm "lucky" enough to be able to cope with getting up 3 - 8 times a night at the moment. I have tried several options for infusion some private and some on the NHS and have hit a brick wall on all of them for differing reasons e.g. post code lottery, having ferritin over 100, or "overworked" neurologists who don't have time to look into setting infusions up as a therapy (I have trouble feeling sympathetic on that one!). I have managed to get my ferritin to 170 using iron bisglycinate every other night with vitamin C (Holland and Barrett Gentle Iron) which I think helps and personally I find that losing weight and reducing carbs and eating less and earlier helps when I can get the will power up. If you do try iron bisglycinate you could see if it stops the RLS that same night as DesertOasis has suggested although it didn't work for me. I will probably end up paying the £800 for an infusion at the Iron Clinic some time this year. It's a lot of money but sleeping is probably the most important thing in your life, especially at your age with a way to go and my view would be this is a first try to see if it works, if it does then you have more ammunition to get the NHS to do it as they should do. All the best.
Thank you for your support. I was starting to wonder if anyone thought it worthwhile at all! I am in the healthcare profession and 60-70% chance of helping if not curing a condition is massive odds and really not something to avoid. It is something worth fighting for. I am well aware that I could spend the rest of my life on controlled drugs but it seems an absolute no brainer to do everything I can to get an iron infusion before resigning myself to that
It is very difficult to get an iron infusion, especially with your ferritin at 95. You will probably have to go private and it will cost around £800. Where do you live?
I am in Bristol. I have managed to convince my neurologist that it is a sensible idea. She was pretty receptive and read all the info I gave her. I’d really struggle to afford £800+, potentially twice a year on iron infusions
Depends where you are in the UK. There are only around 4 or 5 haematology departments that are aware of the link between iron and RLS.St George's in Tooting, the Royal Cornwall in Truro, and Sheffield hospital will arrange NHS iron infusions.
I sent this paper to St George's and they agreed to an infusion. But infusions work for 60%, not everyone.
I’ve not been on DAs long so hopefully no lasting damage and just feel that a 60-70% chance of it at least helping is odds I’d like to try! I was just wondering if there was any advice to give to my neurologist on how to convince the hospital
The research I sent, plus the Mayo Clinic Algorithm below. But, as UK neurologists aren't trained in RLS, many are unaware of the latest research and treatment coming out of the USA.Which neurologist/team are you seeing? Very few knowledgeable neurologists here in the UK.
Sorry to hear of your experience. It shouldn't be this hard to get one. I'm not sure what country you are but here in Australia my GP writes a script and I get the 2 vials of iron and take them back with me to the GP surgery and they will do it there. I've also had them done at the hospital for free. At the GP it cost me $200.
Your doctor should know this and can do it so I'd be questioning them on why they arent. They don't need approval from anyone to do it.
Good luck with it. I've had many iron infusions though and it did absolutely nothing to lesson my RLS symptoms.
Great that you can get that at a reasonable price in Australia.
Unfortunately in the UK, where Xicara is, NHS GPs can prescribe oral iron supplementation but they have to refer a patient for an iron infusion - usually to a specialist consultant who is involved in the care of their condition requiring an iron infusion, e.g. gastroenterology for g-i bleed, or gynaecology for menorrhagia, etc., and the treatment if authorised is carried out on a hospital ward or in a Medical Day Unit.
RLS is only accepted as a condition requiring an infusion in a few NHS hospitals, and even then it would only be done if test results were deemed to warrant it.
It can be possible to arrange for an iron infusion outside the NHS through a private clinic, but this is expensive: e.g. the Iron Clinics in London and Cambridge charge £770 for a consultation and one treatment.
This might be covered by private medical insurers if one has such cover: the Iron Clinics accept BUPA and AXA insurance, but find that some other medical insurers won't pay for this.
And anyway only c. 11% of the UK population has private medical insurance: the vast majority rely on the NHS.
Hi DO, I also suffer from fatigue and have been given ritalin to help with that. It helps somewhat, but for me when I take it daily 2/3x a day 5 mg, I get something like mild withdrawal after a few days. Also, as my doctor didn’t like me taking it AND it didn’t help that much, I now only take it occasionally. E.g. when I have my weekly piano class or on a busy day (like recently a funeral at a distant location, hence including some 6h driving). Would that be an option for you? To take the Ritalin only on days / times when you really could do with less of the fatigue? I can’t imagine by using it sparsely and infrequently one would end up with cumulative (?) side effects. I mean, the effect you fear that may come from daily use.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
I cannot find anything that helps my RLS and only sleep 1 in every 4 nights it,s that bad, and now have it in my right arm and shoulder, I am living a nightmare of a life because of it,,
You list a lot of medicines on your profile, some of which can make RLS worse. If you tell me which ones you are still taking I may be able to give you a safe substitute.
I have tried just about all for RLS and we're no good , I been on Pramipexole for over 30 yrs and know I am augmenting on them but have no other choice
You need to come off pramipexole. It is not helping you and will only get worse.
First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.
To come off pramipexole, reduce by half of a .088 [.125] tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid to help out with the symptoms especially as you near the end. You mentioned you are going on methadone. That should be a big help. In the long run, you will be glad you came off it. Then you can adjust your methadone to completely control your RLS.
You mention Atorvastatin on your profile. Statins make RLS worse for most. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
You don't list on your profile what you are taking for your high blood pressure. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res...
%20mm%20Hg.
Discuss all of the above with your doctor.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any other than the ones on your profile and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
hi, indapamide, amlodipine, losartan potassium, bisoprolol, carbosistine, isoborbide mononitrate, clonazepam, Lansoprazol and Famotidine are what i take, as for which type i take i don't know and cannot see what type on box, as for reducing i have done that already, i used to be on 6 a night, i have reduced to 2 a night, it had all settled down and not to bad but in last 2 weeks has gone mad, my legs are like a washing machine on speed, my consultant has said it is the worst casr of RLS PLMD he has ever seen, they really are bad and the methadone is still in pipeline, i been waithing 2 yrs now
Since your symptoms have gotten worse I would go back up to a previous dose and let the symptoms settle for maybe a week before trying to reduce again. If you made your last reduction by more than half of a .088 [.125] tablet I would try reducing by just that. If you did reduce by that amount then you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks
If you can't get methadone to help you reducing the pramipexole, some have used kratom or cannabis temporarily to help. Or ask for buprenorphine.
Indapamide is a diuretic and all diuretics can make RLS worse but you need it.
Amlodipine is a calcium channel blocker for high blood pressure that makes RLS worse for many but not all.
Losartan, an ARB, also for high blood pressure, is probably OK.
Bisoprolol, a beta blocker, also for high blood pressure is probably safe for RLS but makes PLMD worse.
Carbocisteine is OK.
Isosorbide mononitrate, a nitrate, is probably OK
Lansoprazol is a proton pump inhibitor. RLS-UK says most proton pump Inhibitors worsen RLS and several people on the forum have said it made their RLS worse. I would suggest gaviscon advance instead. Take it 30 minutes after eating. Don't take it within 4 hours of taking iron or within 2 hours after taking iron, nor within 2 hours of most other medicines.
Famotidine, also an antacid, interferes with the absorption of iron. The same advice goes as with Lansoprazol.
The Bisoprolol i take as i have Ischemic heart disease and it is for that, i was on 6 pramipexole for years, i reduced to 2 a night around 8 months ago and have been as settled as i can on this it is only in the last 2 weeks it haqs gone mental again, i am back to sleeping only 1 night in every 3/4 as my legs are so bad, this is what i was like 12 months ago and had been like that for over 3 years hence my high BP, it is a living nightmare and i end up getting so depressed about this because besides all this i am a full time carer for my mother and do around 60+ hrs a week looking after her,, but my ant acid tablets do not seem to be doing anything at moment as i am getting acid coming up into my mouth,,
I misunderstood. I thought you had reduced recently to 2 tablets. But my advice is the same. Go back up on pramipexole until your symptoms aren't so bad. Then start reducing by half of a .088 [.125] tablet every 2 weeks.
Try the Gaviscon Advance and see if it controls your acid.
My hospital gave me 1 infusion and it helped but I couldn't get any more so in the end on the advice from my consultant I have been buying liquid iron off the internet and drinking it, which is fully legal and it has been good for me, the ferrous sulphate tablets I could not deal with, I have Severe RLS and had it for 33 years now and getting worse but getting it from internet does help and I recommend it.
Hi I’ve had RLS for 35 years now and managed to wean myself off Ropinerole thanks to this group. I take gabapentin and ferrous fumerate but it’s not helping at the moment. I have scope to increase my gabapentin but I’m interested in the liquid iron you take as my GP’s almost laughed at me when I asked for an infusion, even though my level was only 7.
Gabapentin made my RLS worse, never again, this may sound strange but this has been trialed in the USA and my consultant has filed for a trial with me because I have severe RLS and PLMD, but going on a trial on Methadone, I know they use it for heroin cum down but is proven to work in USA.
Just be sure to check the amount of elemental iron. It needs to be at least 65 mg although if not, you could take the proportional additional amount to bring it up to that.
Ritalin made every joint in my body hurt so much after a few days of taking it that I could not even walk, I stopped straight away and still took days to get back to normal
So I had already convinced my neurologist that an iron infusion would be a sensible thing for me to try. In my appointment she told me that she was struggling to get one for me but we submitted all the paperwork together at the appointment. We have managed it and it is booked in for the 29th May. Ferric carboxymaltose on the NHS. So my plan would be to get the iron infusion and then try weaning the pregabalin to see if I can manage with just increased ferritin levels alone.
A few questions to the RLS hive mind.
-How long after the iron infusion should I attempt to wean the pregabalin? I would get my levels checked before weaning but when would be a good time to get my levels checked post infusion?
-In terms of weaning pregabalin, I am on 200mg once a day. How slowly should I wean this. It took 5 months to come off 2mg Ropinirole but I am wondering if I can wean pregabalin quicker. I think if I can prove the infusion works by weaning off medications or at least requiring a lower dose, I will be able to convince them to give me regular infusions on the NHS.
-I am taking 322mg ferrous fumarate once a day but should I stop this in the lead up to my infusion? And should I restart it after or just rely on the infusion ?
Thanks to everyone for all the advice on here. It really has been life changing, and saving! I will see if this works. If not, I’ll have to go back to finding a good medication regime that works for me. But definitely worth trying being med free if possible.
Well done especially to your neurologist for organising an iron infusion for you. I hope you’ll benefit. Given your age, I can very well understand wanting to be med-free. Although I must say at 62, I also would like to be med-free. If only the RLS would magically disappear…
You had some questions:
- check out the Mayo Clinic algorithm, but from the top of my head I say it is recommended to have another full iron panel 3 months post infusion. And maybe another one 6 months later. Just to see how things develop. Also from the top of my head, if you respond, you may notice something like 2 weeks (?) to a few months after the infusion. As you say your current dose of pregabalin doesn’t completely cover your symptoms, you may notice improvement. If so, do not start reducing until this improvement remain for at least a few days, maybe as long as two weeks. That is what I would do. But I understand if you want to reduce as soon as possible.
- General rule: small steps and slowly. Pregabalin comes in pills as low as 25mg, and that seems like an acceptable small step doen from your current 200mg. See how you react, and only reduce the next 25mg when things are stable for at least several days. Play it by ear.
- You can stop the ferrofumerate or continue up to the infusion. When I had my infusion (I am in The Netherlands) it was suddenly required that I had a full iron panel one week before the infusion. And as due to the oral iron my iron had risen to just above 100 (it was 101) they almost didn’t want to give the infusion. I had to argue to still get the infusion, saying I had continued to take the oral iron. Sadly, the iron infusion didn’t help me. Mayne I needed another, maybe it just doesn’t work for me. I wish there was more follow-up research.
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