Hi all, newbie here. I've suffered with rls for a number of years, I was on Amitriptyline for a while several years ago but it didn't help. Then about a year ago, my rls seemed to stop apart from when I was really tired at night, sort of a time to go to bed sign. As it stopped once I was going to sleep. Then it came back with a vengeance, I was suffering in the afternoon, evening and getting a couple of hours sleep a night as it was constant throughout the night. My rls affects the back of my knees so I have to keep walking about and stretching my legs. A couple of months ago my Dr put me on Ropinirole, 1mg to start but I was suffering a lot in the afternoon/evening so it was increased to 2mg (1mg tablets). I take 1 at night with my dinner and 1with my lunch. I feel ok after taking the lunchtime one but nauseous after the dinner one and I'm now struggling to stay awake to read my daughter a bedtime story. I was at first sleeping all night, now I'm awake after a few hours and then sleep an hour at a time so I'm really tired all day. Feels like a vicious circle.
Should I wean myself off them, as I don't like feeling crap every night and im not sure if I'm starting to go through the augmentation?
I'm in the UK and my dr didn't say anything about side effects or augmentation or do blood tests.
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Wantnewlegs
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Hello and welcome to the forum I hope you find it helpful.
I'm sorry to hear about your situation. I have some suggestions on what you could try to improve it.
It is possible that you have augmentation if you have daytime symptoms.
However, from what you say it seems you were having daytime symptoms before you started taking ropinirole. If that's the case then if the daytime symptoms you're now getting are no worse than previously, then it may not be augmentation.
Please follow this link for a good drscription of augmentation.
However, it does appear that the ropinirole is not really working. You have increased the dose once and it is really not a good idea to increase it again.
My suggestion is that you should wean off the ropinirole, but you must do this slowly.
Your problem then is what to do about your symptoms.
As your RLS stopped once, then came back with apparently quite suddenly, it sounds as if something triggered it.
Quite often the trigger is another medication. There are quite a few medications which make RLS worse, so if you started any new medication before your RLS returned that may be the trigger. Incidentally, for most RLS sufferers, amitriptyline makes it worse, as do most antidepressants.
Also of significance is that there are several other health conditions that can cause RLS or make it worse. These include diabetes, thyroid dysfunction and kidney dysfunction. If your GP suspects any of these then you could be tested.
A more likely causative factor in your RLS may be iron deficiency. Iron deficiency anaemia in itself can cause RLS. However, in addition, even if there is no anaemia, there can be brain iron deficiency causing RLS.
Your GP should therefore carry out blood tests for serum iron, transferrin, ferritin and haemoglobin.
The key result in these is ferritin.
If your ferritin is below 75ug/L then you should start on iron therapy. Initially this could be an oral iron supplement.
Here are some links to more information about iron therapy for RLS
This unfortunately is no quick fix. It could be at least three months before you gain any benefit. It's also not guaranteed.
Another option then is to replace the ropinirole with an alternative medication.
The standard alternative to a dopamine agonist is an "alpha 2 delta ligand', i.e. pregabalin or gabapentin. These are mentioned in the two of the links above if you scroll down. They do not cause augmentation.
Yout GP can prescribe pregabalin but may want to refer you to a neurologist.
A further option is to take a low dose opiate. Opiates are accepted as a treatment for RLS when dopaminergics have failed, which is what's happened in your case. However, it's not easy to get a prescription.
If your GP suggests you switch to another dopamine agonist, i.e. pramipexole or rotigotine, this is NOT advisable, they will also fail and also cause augmentation.
If you need any more detail or have any question, just ask.
Thanks for your reply Manerva and for the links, they were interesting reading and helpful. I don't like being on these tablets, I actually feel worse now than I did before starting them as I'm tired all the time and feel crap in the afternoon till I go to bed, which gets me down as I don't feel like doing much with my daughter. I'm having to push myself today to do a craft with her, what I feel like doing is curling up on the sofa. I'm on antidepressants and have been for about 11 years, I had my dose increased about the same time as my increased dose of Ropinirole as I was having panic attacks due to children in my daughter's year having covid tests. I have had enough of the nausea, I want to be able to eat properly and I want to choose when I go to bed not be dictated to by a tablet. Does anyone else suffer with the nausea after taking a tablet? I'm going to start decreasing my dosage tonight, once I've figured out how to cut the funny shaped thing into 4!
I have some thoughts about what you write which might give you some ideas.
It is I appreciate a dilemma if you are experiencing symptoms during the day. I can undestand that because of this you are taking the ropinirole earlier in the day too.
Usually however, ropinirole is only taken 2 - 3 hours before bedtime and as it is eliminated from your body in a relatively short time it has worn off in the morning. Drowsiness is a side effect which usually fades after taking it a few weeks and then even then may only happen after taking it i.e. when you're in bed.
Nausea is also a side effect and this usually fades in a few weeks but shouldn't persist for two months so this is a problem.
The solution to the issues that ropinirole is causing you remains that you should withdraw from it. As you've understood, you cannot do this suddenly add in addition doing it too fast can cause severe withdrawal effects.
It may help if you ask your GP to prescribe 0.25mg tablets rather than trying to cut 1mg tablets in quarters.
I suggest you reduce the dose in steps og 0.25mg every 2 - 4 weeks. As soon as you make a cut, you may experience withdrawal effects. This is worsening of the symptoms and sleeplessness. This worsening should wear off after 2 - 4 weeks.
You still need to think about a replacement foir the ropinirole as I wrote before.
It also remains a good idea to be checked for iron deficiency.
As you say you've been taking an antidepressant for 11 years then depending on which one you're taking, this may be a significant factor in making your RLS worse. Increasing the dose will have made your RLS worse.
Most antidepressants make RLS worse. SSRI antidepressants are the worst, but tricyclics, such as amitriptyline can too. Others such as mirtazepine can also make RLS worse.
I'm afraid this puts you in another dilemma. I can only say that whilst antidepressants serve a useful purpose when specific events or situations cause anxiety/depression, long term use isn't advisable in most cases nor the most effective way of dealing with chronic anxiety/depression and you should have been offered access to psychological therapies as well.
There are a few antidepresants that are reputed to be safer for people with RLS. I'm afraid I only know two, that is trazodone and bupropion. Unfortunately doctors are relucatant to prescirbe these as they they have some side effects and trazodone may be addictive.
I appreciate your diffculty and hope yo find a way thnrough this, certainly ropinirole is not helping you.
Thanks again Manerva. The drs here seem to prefer to just prescribe rather than look into things. I'm on Citalopram for depression and anxiety, my drs changed it to that a few months ago. I get a call once a year if not longer to check how I'm doing on them, I've not been offered anything else like therapy.
I managed last night to cut off about a 1/4 off my night tablet, this morning I had mild rls. I'm going to get a phone appointment (can only go into the drs for something that physically needs looking at) to ask for the smaller dose tablets you suggested and also an iron levels check. I'm going to see how my rls is once I'm off Ropinirole before asking for a different tablet. I'm lucky in that at the moment I'm not working so rls permitting once I've taken my daughter to school I can go back to bed.
I never realised that there are so many fellow sufferers and that drs really don't seem to know a lot about it. I've had more help and been offered more treatments for my psoriasis than my rls.
If you experience anxiety/depression as the result of a particular event or situation then a medicine like Citalopram can be useful for a few months to help resolve the situation.
If you suffer generalised anxiety or recurrent depression then again, a few months course may help.
Otherwise, the antidepressant is merely masking the symptoims and any underlying issue is not being dealt with.
I think it's appalling that Drs should just a do a yearly review of an antidepressant and simply continue it if there's no problem.
It also says something about the dire state of mental health services.
I did have therapy after my breakdown (original reason for the antidepressants) but it didn't help as he just told me what I already knew. There was no going deeper into the issues just suggestions on how to stop being depressed. I only had a few sessions as it was actually making me more depressed! I seem to be lucky on the rare occasion and get a dr who actually wants to help solve the condition rather than just mask it.
It does say a lot about our Gp's, I'm not likely to have a review call with being on something like Ropinirole.
I’m sorry to hear of your situation. Manerva has given you excellent advice.
It seems your RLS was caused by the anti depressants ( this happens a lot). All anti depressants cause or worsen RLS and the only safe options are Trazodone & Wellbutrin & one other I cannot recall.
You may find switching to one of these helps or, perhaps ask about clonazepam. It can help anxiety and relieve RLS.
The Ropinirole isn’t helping so it would indicate that the Amitriptyline and citalopram are the culprits.
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