Based on the advice given on here I have been taking iron bisglycinate for a couple of months (I've finished the bottle of 60) and not noticed any discernible impact on my RLS. My ferratin was 22 before I started but I have not had it retested. I have not been taking any medication as I wanted to see if the iron alone would work but am getting desperate now as everything seems to be getting worse and I'm often awake the whole night now and have developed pains in my legs as well as the usual restlessness. i intend to go to the doc and ask for some medication. I have seen on here that Pregabalin or Gabapentin both seem to be recommended but I'm unsure about which would be best as I see people posting about trying to get off these drugs and struggling. Do they have unpleasant side effects ? What should I be asking for? I'm in the UK. Thanks in advance for any advice.
Best Medication: Based on the advice... - Restless Legs Syn...
Best Medication
I always suggest one start with gabapentin as you can increase it in smaller amounts. Once you find the amount that controls your symptoms you can switch directly to pregabalin if you want.
Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 as the peak plasma level is 2 hours. 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 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)."
Every drug can have side effects but most people do not have side effects that make them stop the drug and if you do as long as you wean off it slowly there are no withdrawal symptoms.
Many thanks, Sue. I will print of your advice to take to the GP.
Hi Jauny, I tried Pregabalin a year ago. I have severe RL but had never been on medication. I took 25mg to start and once a week increased by 25mg until I got to 350mg. It didn't help me and I had some side effects but clearly no point in continuing and slowly over 3mths came of them. It was no problem trialing the medication, pity it didn't work for me, but it does work for many others. You could give it a try if your doctor thinks it's OK for you. I now take 5 to 7.5 mg methadone to settle my RL.
Definitely get new full panel iron tests. RLS patients need serum ferritin above 200ųg/L ideally & it can take months/ years for some to get their levels above 200ųg by taking oral iron.If results show serum ferritin below 100ųg/L and percentage saturation below 48% you could push for an iv iron infusion. As they're not licensed yet for RLS, very few hospitals will arrange one on the NHS. But you may be able to get an iron infusion privately via the Iron Clinic in London or Manchester.
Follow SueJohnson advice re medications and if gabapentin or pregabalin do not work within 2 to 3 months, you can switch to a low dose opioid.
Do NOT allow GP to prescribe a dopamine agonist. They are now relegated to 'end of life scenarios' by RLS experts.
Thanks, Jools. Yes, I know not to get a dopamine agonist but am just less sure about the effects of the drugs now recommended. Thanks for your help. Fingers crossed something works!
You will know if you respond well to gabapentinoids within a month.Side effects can make many people hive up too soon, but they settle within 2 to 3 months.
So, if gabapentinoids aren't helping after 2 to 3 months, you can ask for a low dose opioid.
Many GPs are unfamiliar with the use of opioids for RLS, so you may meet with refusal. Have your research ready to argue your case. Targinact is an opioid licensed for RLS in the UK, but you need to take it regularly over 24 hours to avoid mini opioid withdrawals.
The longer half life opioids are more effective, but again, your GP may be unable to prescribe if methadone and Buprenorphine are red listed.
Waiting lists to see a neurologist are around 12 months in the UK, so perhaps ask for a referral now. You may need an opioid and often, neurologists have to recommend them before the GP will prescribe.
Hi Jauny, Sue and Jools have given you good advice. Let me just add a few things about the iron.
1. Standard iron tablets may not have enough iron to raise your levels. The general recommendation is 65 mg elemental iron. You’ll have to read the label in your bottle to see how many iron one pill contains. Most likely you need more than one pill.
2. To raise iron levels it is now recommended to take iron on an empty stomach with vit C once every two days. This way the iron levels raised more or less as quickly as iron taken every other day or even twice a day for people with anemia. There is not specific research for people without anemia. By taking iron once every two days, you keep negative side effects (often constipation) to a minimum. But, it may help to start out with taking up to 65mg elemental iron every day to see whether that helps you immediately, as it does for some people.
3. Because your ferritin was rather low at 22, you may need to continue much longer to raise iron levels enough for it to benefit your RLS. See Jools’ remarks. Even after an iron infusion, i. The studies it took several weeks to months for people to notice benefit. Benefit, as in lessening of symptoms, not a complete elimination, although it may work out that way for some.
I hope you’ll find something that works. Lack of sleep itself contributes to worsening of RLS, I find.
You may have absorption problems. Try taking the probiotic LP299v (Jarrow "Ideal Bowel Support"). Here's the study...
pubmed.ncbi.nlm.nih.gov/343...
Ooh thanks, I'll that. I have been trying to take the iron with fruit juice as advised by Sue Johnson but not sure whether I'm absorbing it or not. I need to have another test, I suppose.
Jauny, do you take around 56mg of the ferrous bisglycinate on an empty stomach around two hours before bed? If I were to take it even at 5pm it would do little to nothing for my RLS that starts around midnight. By taking it later, my RLS is gone in one hour for one night. Please try taking it without the juice. Don’t take any food past 8pm. Are you on an SSRi or HRT?
My tablets have 50 mg ferrous bisglycinate. I've been taking them 2 hours or more after eating or drinking tea or coffee but probably only half an hour or an hour before going to bed. Not on any medication at all at the moment.
Damn. Your RLS should still go. I haven’t read your history at all. Iron doesn’t work well when first off the DAs or you have a co-morbid illness like kidney disease or you’re taking other meds like calcium channel blockers, statins or PPIs.
I haven't taken any DAs or have any of those health conditions , that I know of! I think I need to have another blood test and see whether the iron I've been taking has had any impact on my serum ferretin which was 22 before I started taking it.
Your RLS started in your 40s for first time? Hmm? Any vaginal suppositories or melatonin or topical progesterone cream? What changed in 40s? Back surgery?
I think I had it younger than that really but it's got steadily worse. Used to be sporadic. Now it affects me most nights. On a good night I sleep initially for a couple of hours and then wake up and can't lie still. I come downsstairs and walk about for an hour or so and go back to sleep. On a bad one I cant settle at all and am awake until about 6 am when I sleep like a baby! I can't think of anything particular that happened when it started getting worse. There is something genetic going on as I am following almost exactly the same pattern as my mother.
I see you mention you have insomnia. It sounds like in addition to RLS? Are you taking anything like Benedryl for that?
Yes and I'm not always able to separate out RSL from insomnia but I feel as if the RLS is the prime cause of my insomnia The only difference I can perceive is that if it's insomnia I am generally happy to lie still in bed and read. I don't worry about lack of sleep now that I'm retired and don't have to get up so in this situation I'm actually quite contented. If it's RSL I cant lie still at all, it's not just my legs but my whole body. I have tried over the counter and prescription meds for insomnia but they all make me worse in the night and I feel kind of spaced out and manic and then invariably I'm like a zombie in the morning.
Ok, the last thing is list out everything you take daily. Any supplement or med. whole body RLS generally doesnt come out of the blue in your 40s. Can you be anemic? I mean literally - low red blood count.
I don't think it did come out of the blue. Had mild and occasional symptoms in my legs which over time has got worse and affected most of my body (or at least I'm unable to isolate what it is making me need to move, but I know it's not just my legs) I get standard RLS at the theatre and on planes! I had a full blood panel in Feb and everything looked ok. Until I realised it wasn't sensible to continue because of RLS, I was giving blood and the haemoglobin was always normal
Are you the one who takes the Vega brand of iron. So many replies today
PS..sorry, I dont take anything every day except the iron, although have tried various things at other times...magnesium, kind sleep patches with melatonin, valerium
I never heard of “biglycinate”. Can you afford a new bottle of iron? Not saying that’s it.
Never mind. Didn’t see the “s” in the photo of the bottle.
I took the bisglycinate on the recommendation of Sue Johnson and others on here as it is supposed to be gentler and more easily absorbed, I believe. Yes, it's the Vega one
Seems fine. Bisglycinate is excellent. I thought your bottle said biglycinate. I think I’m blind some days. I’ve run out of suggestions. Some people have had success taking the iron with a probiotic. How’s your gut? Lastly, you can try “heme iron.” I like a brand called Proferrin. It’s absorbed higher up in GI tract and is allegedly better than non-heme irons like the bisglycinate. If you try it please let us know your results immediately. I’ll pass you over to Sue and Jools for their suggestions regarding the Gabas and opiates.
I will try the probiotic. Thank you for all your help and the chat!
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