I have had more severe RLS since last March, which is possibly a Long-Covid symptom. So far I have had my iron/ferritin tested. My ferritin was on 25 initially but has gone up to 45 after taking oral iron supplement which I still continue to take. My RSL has not improved much yet though. It is still cyclical, worse around ovulation and pre-menstruation.
Meds wise I have so far only used pain killers, alternating Co-codamol (which works best but I am nervous of taking daily) and Paracetamol interspersed with Ibuprofen on the non-Co-Codamol nights (which doesn't work so well and I don't get much sleep).
The GP wants me to try Ropinirole next. Could you please let me know about your experiences with this drug and if you think this would be a good 'first' drug to try for RLS. Thanks.
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KassandraTroy
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The simple answer is that ropinriole is a dopamine agonist and dopamine agonists are no longer recommended as a first treatment for RLS.
Your GP possibly isn't aware of this. Your doctor should also tell you what the alternatives are. but possibly isn't aware of this either.
I'd suggest that you do not take ropinirole, but instead ask for an alpha 2 delta ligand, either pregabalin or gabapentin.
The reason for this is that dopamine agonists carry a risk of major complications. Less common is that they can cause an Impulse Control Disorder which can be a very serious condition.
However a very common complication of all dopamine agonists is dopaminergic augmentation. If you read other posts on this forum you will see how many people have been prescribed a dopamine agomnist without any warning and have consequently suffered.
Thanks for that detailed info Manerva.I will talk to my GP. She suggested the ropinirole as a next step but actually asked me to ask in this forum about what you all thought about it. She is open to suggestions. I will pass on the info to her so she is more aware of all the pitfalls also when helping other patients.
Maybe I should wait until my ferritin has gone up even more before starting with a med. I am taking the iron as you suggested below. I read about that regime here on the forum. So thanks again. If I do go for the alpha-2-delta ligand it sounds like pregabalin is slightly more suitable according to the Wiki info. This is all very helpful. Thanks.
I was able to raise my ferritin level from 12 to over 100 by taking 65 mg of iron as iron sulfate 3 times a day. Yes I know this is alot but it worked. It required about 1 year. Other commentary on this forum indicate there are better forms of iron to take. Unfortunately, raising my ferritin level did not really help my RLS/PLM.
Ferrous bisglycinate, (gentle iron) is a popular form as it less disturbing for the gut.
The evidence is that it's the frequency at which you take the iron that's as significant as the amount. More than once a day is less effective than just once a day, and better still once every two days is better than every day.
If your ferritin is 100 with no benefit, then you may wish to aim to get it higher. A minimum of 200 would be ifeal, or even higher.
However it may only be possible to do that with an IV infusion.
Thanks for the reply. I had an appointment with my sleep doc today and we agreed to restart iron supplements. Doc said this is ok as long as my iron saturation is below 40% (it was 24%) in March. I have a bottle of the iron bisglycinate so will start this @ 1 capsule per day (27 mg iron). Will add vitamin C to help with absorption. Iron profile will be repeated in June. I also note that at one point my ferritin level was 187.
I suppose its possible that the iron has helped but my symptoms are so variable it might be hard to tell. I mostly have PLM as opposed to the more classic RLS symptoms I've read about. Over the course of a month, my PLM can range from 0-10. This is my personal made up scale with 10 being severe PLM for more than 2 hrs.
I'm puzzled at the proposition that taking more iron more often is less effective. I can see this being true on a percentage basis but not on an absolute basis. I think that having a higher concentration for a longer period of time in the intestines would lead to more diffusion (absorption) into the body. In chemistry terms: more iron leads to a higher concentration driving force for diffusion.
Yes, a saturation level of less than 40% or even 45% is OK. It's unlikely to be higher than that unless you have a condtion such as haemochromatosis.
Taking oral iron is unlikely to lead to iron overload.
Transferrin sat only becomes significant if an IV iron infusion is being considered.
The reason for this is that the body has a mechanism for limiting blood iron levels. This is carried out by a hormone called hepcidin. Hepcidin limits the level of iron in the blood by preventing the absorption from the gut.
People who lack this hormone, a genetic condition, haemochromatosis, suffer from iron overload. It's a very severe condition.
When you take oral iron, this triggers the release of hepcidin. The hepcidin prevents the absorption of any further iron.
The hepcidin remains active for 24 hours, hence once you've taken one dose of iron, there's little point in taking any more that day, or even the next.
Hence the more often you take iron the less of it you will absorb.
If you have an IV iron infusion however this bypasses the hepcidin system and this could lead to iron overload IF your transferrin sat is over 45%.
It does sound counter intuitive that taking iron less often leads to more of it being absorbed, but this has been demonstrated by research.
Same as Manerva below I wouldn’t take Ropinorole either. Your GP will be seeing how distressed you are & will be trying to help but you sound still young re your mention of cycles & so have your whole life ahead of you to deal with RLS & the fall out of potential treatment.I agree eg Pregabalin is a better option though I took it & eventually I think it too made me worse though it is thought to me less likely too not being a dopamine agonist ( DA ) but it is also, like the DA’s, but by a different mechanism, hard to come off.
Do we know if RLS is a long Covid symptom and anyone thought of the mechanism? Do you have any sign of neurological damage?
I know the non codeine nights are awful but in the long run intermittent codeine might be best though you are right to be wary of regular use.
Work hard to get your ferritin up further if you can as that might be the answer. The trouble is the other treatments often lead to longer term problems.
If there is a neurological element pregabalin is more likely to work but .,...... ( as above )
Are you trying to work through all this? What are your daytime responsibilities? Can you take a day time nap to help.
Hope your GP isn’t cross with our interference. He/she will be desperately trying to help, I have 2 hats on here - an ex GP & also a severe RLS sufferer with neuropathy ( but not long Covid which I am very sorry to hear about )
Hello Alison7,As the others have said do not touch Ropinirole etc, I have been there, the ending was very unpleasant. If you go for Pregabalin do read all the possible side effects, some of them sneak up on you slowly so you don't really notice. Do get your doctor to do blood tests, probably at 4 month intervals to check that the Pregabalin is not getting rid of your platelets, it dropped mine by 30%+. I only took Pregabalin for about 9 months before I had to come off it.
Thanks for the heads up Electrontrav re side effects. The platelet drop by 30% sounds quite steep. I will ask the GP to check my bloods regularly. After you came of Pregabalin, did you go onto a different medication, if you don't mind me asking?
Hello KassandraTroy,In my innocence of RLS when it was first diagnosed I presumed that the neurologist knew about RLS meds and that his first choice of Ropinirole was ok, a dopamine agonist, so that is what I used. I was started on 0.25mg a day but after about 4 months it had to be increased to 0.5mg and so it progressed over the following months. Luckily I found this forum and quickly learned a lot and realised I was heading for augmentation so I started to wean myself off the Ropinirole.
Weaning off was done without any help over several weeks and the last 3 days were horrendous, I walked around the house 24hs day. My wife contacted the emergency doctor who suggested Neupro patches (Rotigotine) as the quickest and best way to return me to a calm situation. The Neupro 2mg patches work well but they are still a D.A . and decided that I wanted to come off them before I got to augmentation again. Pregabalin or Gabapentine seem to widely used so I suggested to my doctor that I could take Pregabalin while reducing the Neupro patches by cutting them down in size, I got down to 1mg without problems. This was going well until we realised that my platelets were being reduced. So now I am back on 2mg Neupro and wondering where to go next. I now realise that the neurologist I saw originally does not know anything about RLS so I will need my doctor to find a new one that does.
Thank you so much for your detailed response Alison7. I think I will wait a bit longer before potentially starting with a new med and try hard to get my ferritin higher. It is on 45 now but hopefully I will manage to get it even higher.
I haven't had any tests re. neurological damage. It is just as guess, re. long Covid. My RLS started after I had the Epstein Barr virus in 21 years ago but I managed to more or less get rid of it over time. In the last few years I only had RLS a few nights pre-menstrual but since March 2020 it has come back with a vengenance. My dh and I most likely had Covid then, with the tell tale symptoms but couldn't get tested and since then my RLS has been really bad again.
My GP is luckily open to suggestions. She suggested Ropinirole but wanted me to check in here what people thought about it.
I can't take afternoon naps daily but I am sort of flexible but we are home educating our kids and running a business from home with my husband. So things can get a bit busy sometimes. Thanks so much again for your help.
I can’t imagine how hard it must be to be home schooling & running a business whiie sleep deprived.I presume you also know the stuff about various other medicines making rls worse, some quite commonly used. There will be a list on this site. Manerva will know where to access if you can’t find it.
There are also probably food triggers which many swear by. They can vary though & I’m not sure if I’ve yet properly identified mine though many think sugar, additives, msg are some. I think maybe also bananas for me which is my sugar substitute.
It’s also useful to work out which ‘switch off’ mechanisms work for you so each episode is as short as possible. Something to concentrate on many find helpful eg puzzles, playing an instrument ( my piano has a quiet key! ), and I find coffee helps as do some others though it is counterintuitive.
Some people benefit by raising their ferritin to 350 or thereabouts. This needs an intravenous iron infusion. IV The IV helps a large proportion of RLS victims, perhaps 50% completely and another 25% with some improvement.
The only way to find out if an infusion will help you is to try it out. You will face some hassles finding a doctor to approve it.
I would suggest that you make this top priority for as soon as possible.
All of the above I agree. I am in the US, codeine worked best for me, I could take it as needed. FDA said we can no longer do that here in US. Tried DA's had horrible augmentation then withdraws. Had iron infusions. Increased my levels but did not help RLS. Now I take Gabapentin a very low dose it helps. Some minor side effects that I can live with because I now sleep. Low term usage with side effects is a worry, but that is concern with any medication.
I’ve been taking Ropinirole for some time now. It does help with my restless legs but after sometime taking it it seems I need a higher dose. I went from 1 mg to 2. I feel this drug seems to make it where you have to have the drug after starting on it. Not sure if it seems to have increased the annoyance of RLS even though it helps. Sorry, I know this sounds confusing, wish I could explain it better. Maybe someone else who reads this can help us both out. Stay well and good luck with your restless legs, they’re sooooooo annoying!!!
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