My mums rls is playing up again. She's on prevailing 150mg at night. This dose worked for her for about 5 months. Previously she's had gabapentin, ropinerole and pramiprexole. They all worked for a few months and then back to square 1.
She hasn't tried the rotigotine patches but im sceptical in her trying these as I'm worried the same thing will happen, work for a few months and then symptoms re start.
She has a telephone consultation with the gp and today and he did say pre covid tk.e he will send her to neurologist if her rls comes back.
However I the mean time what should she do? Try taking one of the meds shes tried previously and keep changing every time symptoms re appear? or should she try going rls meds free and only have tramadol.???
Tramadol she takes 2x50mg twice a day regularly. She definitely needs them. Gp has agreed to keep her on tramadol however last time she went to a neurologist, she wanted to rid her of Tramadol.
So confused any help is appreciated thanks in advance ☺
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Bejwo50
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Sorry to hear this, I would say that of the two main first line medications for RLS gabapentin and pregabalin are preferrable to the dopamine agonists, pramipexole, ropinirole or rotigotine.
It's not a good idea tto go back to using any dopamine agonist.
The dose of pregabalin she's on is the mimimum effective dose and it can take up to 400mg to be effective so it's wortk asking for that to be increased.
Seeing a neurologist is a great idea but they may not necessarily be knowledgeable about RLS snd they will only prescribe medication. An opition that a neurologist might consider is a more potent opiate, oxycodone or buprenorphine. Methadone can also help.
It's a good idea, as well for your mum and yourself to learn as much as you can about RLS and its management rather than relying 100% on doctors and medicines.
It may be,e.g. that there are things aggravating your mum's RLS. This coukd include any other medications she's taking either regularly or occasionally.
It could also be affected by any other health condition she may have, and may not be aware of.
It could also be affected by mineral or vitamin deficiencies especially iron, but also magnesium, vitamins B12, D or E. That is worth following up.
There may also be dietary factors food intolerences or simply a poor diet. If so there is a variety of diets that can be tried. e.g. gluten ir lactose free, low carbohydrate or low oxalate.
Added sugar, foods with simple sugar in them or refined carbohydrate should be avoided as well as alcohol.
It's also helpful when symptoms occur to have sone strategy for relieving or dealing with them. Although not always entirely sensible there are quite a few suggestions on this forum.
Overall medicines will fail if they are competing with aggravating factors.
Thanks for the info, I have requested to increase the dose to 300mg and gp has agreed, he said if that doesn't work then we could try another medication. I told him I don't want her to take a dopamine agonist and he questioned why? And I wasn't sure so yes, I do need to educate myself more... oops 😬
Last time we went to the neurologist she just wanted mum to rid of tramadol as she thinks they are worsening mums rls mum isn't happy about this... but I may suggest the opiates you have mentioned.
Such an awful journey. Sending love 💘 and hugs 🤗 to all
The reason that NOBODY really should be taking a dopamine agonist if it can be possibly be avoided is that they commonly cause a condition called "augmentation". This happens after a while with taking any dopamine agonist. few people don't get this, but the majority do. It takes years to develop in some cases. In some it only takes months.
Pregabalin doesn't cause augmentation.
The UK national guidelines on the management of RLS instruct doctors to warn patuents about this, but the majority don't, even neurologists. I suspect this is because they don't know about it. When I mentioned augmentation to a GP, she asked, whst's that? A great doctor mind you, but ignorant about RLS.
, this is why the neurologist may have said it can make RLS worse. (That is - augmentation). However, I believe that tramadol is more likely to cause "rebound" rather than augmentation, this is whete ta!ing a meducation suppresses the symptoms, but it wears off nefore the next dose and symotoms are worse as a result of being suppressed.
One way round this is to take the slow release version o.f tramafol, it lasts longer.
You could ask your doctor also to do fests for serum uron, transferrin, ferrutin and haemaglobin.
If the doctor asks why it's because RLS has a very strong association with iron deficiency. Partivulatly it's known that fir someone witj RLS ferritin needs to be at least 100ug/L. I'm guessing your GP won't know this either, so you need to know the result, the doctor may just say it's normal. Normal 15ug/L or more, isn't good enough.
Ferritin can be raised by takuing an oral supplement. An over the counter "gentle" iron one is better, NOT a prescription one. Unless your mum's abaemic the prescription one will jyst cayse intestinal problems.
MORE iron is absorbed if you take it less often, strange as that sounds, i.e. every other day, taken on an emoty stomach with a glass of orange.
Doctor
s won't tell you any of this , that's why you need to learn fir yourself.
• in reply to
The best iron supplement to take is floradix. Comes in liquid or tabs. Swiss products all natural and absorbs quite well.
You say pregablin doesn't cause augmentation, but isn't this augmentation whats happening to my mum now? The same happened with gabapentine. I feel that all rls meds cause augmentation after some time.
They work for a while then symptoms return and then a change meds till they work... and it continues in this way. That's what's happened with my mum so far.
She has taken 300mg of pregablin and has had 2 better nights, so hoping this will be the way forward. But I'm not sure for how long.
Only dopamine and dopamine agonists (DAs), cause augmentation. Tramadol is believed to cause it, but in that case it's rebound rather than augmentation. Nothing else causes augmentation.
If symptoms return after a while that may possibly be loss of efficacy. Loss of efficacy is also very common with the dopamine DAs, perhaps not so common with gabapentin/pregabalin, which suggests something else may be aggravating your mum's RLS.
Augmentation is where a DA starts to make symptoms worse rather than better. This is believed to happen because RLS is partly due to a lack of dopamine receptor sites in parts of the brain.
It has been shown that DAs can cause "downregulation" of dopamine receptor sites i.e. leading to an even greater lack. Gabapentin/pregabalin have no effect on dopamine receotor sites.
Augmentation is not merely the return of symptoms.
Augmentation is characterised by -
Symptoms become more intense.
They spread from the legs to other parts of the body.
They start to happen earlier in the day.
They start more quickly when sitting or lying down.
The augmentation I suffered was, I believe, fairly typical. I never slept more than 3 hours any night.
Symptoms occurred any time of day, within seconds of staying still and consisted of involuntary movements, "twitching" of my legs, arms and shoulders.
This was caused by a DA and the augmentation disappeared as I reduced the DA. I have been taking gabapentin for nearly two years now and my symptoms remain well controlled.
Just in case, if none of the reasons manerva mentioned holds true for your mum's case then a drug holiday might help too. All the medications are known to lose effectiveness with time. A drug holiday would reset the receptors. Some people here try that especially with Tramadol.
I do that too. Till I get my iron issues sorted.
Or of course, you can look into increasing pregabalin dose. My doctor though refuses to increase the dose of pregabalin or gabapentin or whatever. She just wants to me suck up high doses of dopamine agonists. I never agree to it.
Sorry to hear this. The only thing that works for me is Nicotine replacement tablets... I only have a small bite of one and the symptoms of RLS are gone. It is amazing. I do not take them with any other medication. I only occasionally get RLS now and noticed that it comes if overtired or drink wine so try to be careful.
Hi, yes I am aware of this and have had breaks off it to test for improvement. However it doesn't seem to make any difference to the rls symptoms while off it.
It helps so much with fibromyalgia pain and also keeps my emotions in place. I can get very low and tearful with the illness. As I'm sure is the same for many. The lack of sleep makes me an emotional wreck at times.
Definitely check the antihistamine to make sure it isn't making the RLS worse. Also, there is no reason to go up to 300 mg of Pregabalin right away. I started at 50mg, which worked for a week, been increasing by 25 mg when necessary. I'm up to 225mg and hopefully this is the dose that will work for a longer period. The reality from reading so many posts is often these drugs don't work forever. Several months of sleep is better than several months of lousy sleep or worse. But definitely check all her drugs to make sure she isn't taking ones that make her RLS worse.
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