Welcome Tilly . So sorry you are going through this at the moment. Firstly 1.5mg seems an awfully high dosage of Ropinirole and secondly Sertraline can make RLS much worse. Low iron certainly won't help . There are members on here who have had to have iron infusions. Make sure your health professional gets it the the level it needs to be at. Personally I would guess Ropinirole is not working for you and I would be very wary of increasing it again. I never went above 0.5mg. I had to come off it as was not working any more and making my RLS even worse. There are other medications out there and a lot of information on this site about them. There are members on here who are far more knowledgeable than me and I am sure within 48 hours you will have replies from some of them. x
Hello Tilly.
It's great that you've found this site because everyone with moderate to severe RLS, especially, needs to find out as much as they can about managing this affliction. This is partly because most doctors are quite ignorant about how the cobdition affects you and how to treat it.
Great that you have started on iron supplements. Iron deficiency is quite strongly associated with RLS. This is more to do with deficiency in the. brain rather than generally. Hopefully you had a test for your Ferritin level.
Managing RLS is about avoiding things that make it worse, doing things that make it better and knowing the consequences of any treatment.
Things that make it worse. You are already taking iron, but it may be worthwhile, if not already done, to get your doctor to test for your levels of vitamin D and B12, also magnesium and potassium. Correcting defiiciencies in these can relieve RLS.
There are some things that act as "triggers" for RLS, i.e. they make it worse. It often helps to keep a diary of events and symptoms to help identify what your triggers are.
Typical triggers are alcohol, some antacids, anything with antihistamine (e.g. cough medicine), anti-emetics, gluten in the diet or food additives and some antidepressants. For some people sugar.
Tricyclic antidepressants and Selective Serotonin Reuptake Inhibitor (SSRI) antidepressants notably make RLS worse.
Sertraline is an SSRI so may be making your RLS worse. There are some "RLS safe" medicines for anxiety you could take, but really it's better to use non pharmacological methods for dealing with anxiety. There are some very effective psychological.therapies. Controlling your RLS will help reduce your anxiety. Reducing your anxiety will reduce your RLS, anxiety is a trigger. Seeing a counsellor will help, talking about your fears stemming from your RLS and working through them.
Know thy poison! Your doctor has started you on Ropinirole. This is one of a class of medicines known as "Dopamine Agonists". (DAs).
DAs can be very effective for RLS in most cases. It doesn't sound like it's working too well for you. It seems the way your doctor is dealing with this is by increasing the dose, again and again.
This is really NOT a good idea. The doctor should have warned you of the risks of taking a DA i.e. loss of efficacy (it stops working), "augmentation" ( it actually makes the RLS worse not better). and Impulse Control Disorders ( addictive behaviour gambling, shopping, overeating). The higher the dose the more likely augmentation will occur.
Follow this link to find out more about augmentation.
I would definitely NOT increase the Ropinirole any more!!!!!
I would incrementally reduce and stop taking the Sertraline
Tiger balm is a "counterirritant" and may help, but some people use a magnesium cream.
There are alternatives to DAs if the Ropinirole fails to work, (it's failing at the moment). It's probably not a good idea to let your doctor switch you to one of the other DAs, i.e. Pramipexole or Rotigotine (Neupro patch). You will possibly end up in the same situation.
According to UK national guidelines on the treatment of RLS, the alternatives to DAs are Gabapentin or Pregabalin. These do mot cause augmentation.
This is a link to these guidelines. You might want to print these links out and show them to your doctor.
If you don't live in the UK this link might not work.
You can add Gabapentin to your Ropinirole. or switch from one to the other, but if you ever do that, don't stop Ropinirole suddenly, you would need to reduce it slowly.
Some good information about treatments generally, includng mention of antidepressants, e.g. Sertraline
Hi Manerva..you seem to be very knowledgeable about rls..and I read your suggestions on the 2 links.
Iv had rls on and off for several years and at one time last summer it disappeared for about 3-4 months.
I was on steroids for another trouble with platelets..but was prescribed steroids plus calcium tablets and vitamin D..am wondering if any of these stopped the rls or was it just the long daylight hours... circadian rhythm as rls has returned this autumn with a vengeance.
However last blood test showed 48 for iron ferritin level so might be anaemic as I do get very breathless.
Also I have hypothyroidism as well which could be connected.. lack of thyroid hormone..
I'm a retired lady but can't give up looking for the answer.
Jan, I know some things but I'm no expert and NOT a doctor.
You mention a few things and several of these may be affecting your RLS.
In no particular order. RLS is a circadian disorder in that symptoms are worse when dopamine levels (and possibly other things) are low. This does depend on regulation of the circadian rhythms which is largely due exposure to light. It's more difficult as nights get longer and days get colder, not wanting to go outside so much, to get enough exposure to natural light during the day. We may also tend to have lights on in the evening when we should be avoiding it. It might help then to limit how much light we expose ourselves to in the evenings and get out more, or be near a window in the day. It's also possible to get "SADs" lamps. (Seasonal Affective Disorder) which mimic natural daylight and can be used during dark cold days.
Hypothyroidism, is known to aggravate RLS, so hopefully you are keeping that under control.
Vitamin D supplements can help if you are deficient in that. Additionally you can try taking vitamin B12. If your doctor has tested you for potassium levels ( amongst other "electrolytes") and your potassium.is low, ask about a supplement for that, but do ask your doctor first as it's not recommended in some cases.
Ferritin is not actually a test for iron deficiency, or any form of anaemia. Hopefully again, your doctor has tested for anaemias. The tests will be Haemoglobin, Red Blood Cell count, and Red Blood Cell size.
Iron deficiency anaemia can contribute to RLS, but it is due to a lack of iron in the blood and even if there isn't a lack in the blood there can still be a lack.of iron in the brain causing RLS. Ferritin is an indicator of this. Your doctor may have told you that your Ferritin is "normal". However, there is evidence that Ferritin needs to be higher for people with RLS, at least 70 and better still 100. Yours is too low.
You could take an iron supplement to try and increase your Ferritin. Unfortunately iron tablets can upset your stomach and bowels and additionally your body has a way of regulating how much of it absorbed. a lot of it can go straight through.
What I do is take "Gentle iron" and when I take it, I also take a senokot tablet to prevent constipation. I also take 2 of the "daily tablets" every other day and drink orange juice (vitamin C) with them. This increases how much is absorbed. You can iron tablets combined with vit C.
I hope you are aware of the things that can make RLS worse and avoid them. There's a long list. Alcohol, antihistamine, chocolate, sugar, anti vertigo tablets and some antidepressants and indigestion remedies.
I'm not sure what other health problems you have, but they may also affect your RLS. Neuropathy can affect RLS for example.
The final thing is, if you're taking amy medication for your RLS, there may be an issue with that. Medications can stop working and some even make it worse. They may need reviewing.
Just to add to Manerva's excellenet reply - are you taking Vitamin C with your iron supplement, because there is evidence to show that taking 500mg Vit C with the iron supplement improves/maximises it's uptake by the body. Also, take it every other day, as apparently that improves it's uptake too. In addition, I don't think Manerva mentioned caffeine and chocolate as possible triggers.
1.5mg isn't awfully high for RL patients as the maximum daily recommended limit for the condition is 4mg, however, I totally agree with what you have been advised - don't increase it anymore. DAs, despite providing excellent relief for the majority of people who take them are awful medications due to the tolerance and augmentation issues mentioned above/before. I'm now on 4mg of DAs every day and am preparing myself mentally for withdrawing from them soon when I get everything in place (alternative medications, wife able to take time off work, no travel or socialising plans etc).
You are correct, it does affect your whole life, but to be positive, you have found this website quite quickly and there is a wealth of information on here. Some final thoughts/comments - light/mild exercise is good for RL (as well as the mind etc), but avoid vigorous exercise as this usually makes the condition worse. And regular stretching is also good, especially before going to bed.
Good points, I forgot to mention chocolate and vitamin C. Taking iron every other day is also a good idea because the absorption of iron from the gut is regulated by a chemical called Hepcidin. Although iron may be deficient in the brain there may still be sufficient elsewhere in the body and hence absorption is inhibited. Taking it every OTHER day fools the Hepcidin system.
Some people find caffiene a trigger some actually find it helps.
4mg is no longer the recommended maximum dose. Most RLS experts believe the maximum dose should be 0.5mg/1mg and shouldn't be increased.
I know that most doctors and neurologists are unaware of this and just look up the doses in their prescribing book. The higher the dose, the more likelihood of augmentation.
Welcome. You will find a wealth of info on this site so spend some time reading through the posts and replies and watch the video on augmentation on the main page of the RLS UK website.
As Manerva has advised, Sertraline worsens or causes RLS so should be avoided.
Gabapentin or pregabalin or diazepam ( occasionally) are all useful for anxiety and will also help RLS.
Do not increase the ropinirole- it will lead to augmentation. Keep to the lowest possible dose and if it stops working, change to pregabalin. Studies have shown it's more effective than pramipexole ( another DA).
Raising your serum ferritin above 100 has also been shown to help RLS and taking ferrous bisglycinate EVERY OTHER NIGHT raises levels faster than taking every day. If your ferritin is very low, you could ask your local hospital to consider an IV iron infusion as that will raise levels much faster.
I am afraid my view of Ropiniole seems to differ from everyone else. I am 74 and have been taking Ropinirole for over 10 years. I take 1mg at 6.30pm 3mg about half an hour before bed and then 1mg after that is beginning to wear off about 5 hours later. When I wanted to up the dose from 4 to 5 mg I did see a specialist and he wrote a letter suggesting other possibilities if the 5 mg stops working. However that was 4 or 5 years ago now. I am also taking magnesium. I am very active and also try to avoid situations where I need to sit for long periods in the evening. I do sometimes need to sleep on my own to avoid jumping in my sleep and keeping my partner awake. I sleep besides our bed on a fairly hard surface and find that helps
I think so far you have been lucky with taking the Ropinerole, but the fact you have to take another 1mg after 5 hrs when you have already taken 4mgs is not a good sign. When you have to increase your dose to get relief, then it is starting to point to Augmentation, Now you have read the post and what other have said, then you can beware of any more signs of your Ropinerole failing. Knowledge is power.
Thank you everyone for you kind words and advice. You have certainly given me a lot to think about and consider . Once I’ve done this I may contact some of you individually if that’s ok.
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