Help: I have just been given... - Restless Legs Syn...

Restless Legs Syndrome
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I have just been given Amitriptyline and have been told to wean myself off ropinerol and Gabapentin this week and then start the Amitriptyline. Does anyone know the best way to do this as I am dreading the change over.

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Hi I am afraid this is not a good plan. Amitriptyline makes RLS much worse for the vast majority of us. My GP did exactly the same thing to me -they think as it helps with sleep it will be of benefit to you. Well ok for those who don't have RLS but poison to those who do.

You also need to wean off Ropinerole very slowly not within a week. It is also not a good idea to wean off Ropinerole and Gabapentin at the same time -then adding in the Amitriptyline is a recipe for disaster!

Can you go back and see a different GP? Most people need a strong painkiller to wean off Ropinerole as you will most likely get severe RLS. Some find Tramadol helpful. I would stick with the Gabapentin at least until you have gone a few months after the Ropinerole withdrawals.

Why are you stopping both those meds?

Pipps x

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I said to the doctor that the ropinerol and Gabapentin was not working and she said to come of them and take the Amitriptyline but it don’t sound right to me

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Why are you changing?

Have you had Ami before? What is the reason for it being prescribed?

Are you augmenting?

If so ,please look at the pinned post, below or beside.

Sorry for being so short, but I am just going to sleep and don't have the time to elaborate. And this is important.

I hope your doctor knows what she is doing.

Cheers.

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Recipe for disaster I would say Madlegs x

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I am not sure I said the ropinerol and Gabapentin was not working and the doctor said stop taking them and take the Amitriptyline but it all seems a bit strange to me to stop taking them just like that and start Amitriptyline

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I do not say this lightly, but you need to get a second opinion on this proposed course of action, BEFORE doing anything.

It flies in the face of any sensible or supportable medical knowledge.

If you wish to get a top medical opinion for free, email the contact at

rlshelp.org he is a top rls expert and you can show his answer to your new GP.

I'll get correct link asap.😣

That's it. Click on the yellow button. Be clear in your facts. Good luck.

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Jane, just to reinforce what others have said, I'm absolutely stunned.

If this doctor knows you have RLS and wants you to stop taking medications that will relieve your RLS and start taking something that will make it worse, then it's not only ignorant, it's cruel.

The only justification the doctor can possibly have is that they don't believe you have RLS.

If that's the case, what's the amitriptyline for?

Perhaps it would help if you told us exactly what explanation the doctor gave for doing this.

You may have to see another doctor.

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Hi all she said was that because the ropinerol and Gabapentin are not working come of them and take these insti

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I can’t even imagine it! I take both and I don’t know how I could cope without them! Why do you have to do this?

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I told the doctor the ropinerol and Gabapentin are not working and she said come of them and take Amitriptyline instead I am petrified about this and found her so unhelpful

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Jane, I have to say, in my opinion this is more than unhelpful it appears incompetent.

Presuming that you're taking two drugs for RLS which are recommended as first line treatment for RLS and they're not working then it's impossible to say which ONE of them is not working.

It is known that too much of a dopamine agonist (DA) which is what Ropinirole is, over a period of time can lead to RLS getting worse. This is called augmentation. The way to treat augmentation due to a DA is to reduce and stop taking the DA.

Your doctor may have been right to advise THIS. However withdrawing from a DA can cause serious withdrawal effects and depending on the dose may have to be done over a falrly long time. A week is nonsense. You would also need something else to help control the withdrawal effects. This doctor isn't prescribing anything that could do this

The Gabapentin may not be working if the dose is too low. You don't mention what dose you're on, but depending on this, it could be increased.

As has been already said, Gabapentin withdrawal can also cause serious withdrawal effects and again needs to be slow and NOT at the same time, this would be giving you combined withdrawal effects which is possibly very dangerous.

It appears to me that this doctor is putting you in danger when they're supposed to be helping and you must excuse me for getting very angry on your behalf.

IF you did actually manage to safely get off both drugs at the same time and in one week, which I very much doubt, then even after withdrawal effects had lessened, you would be then left in the same situation with your RLS that you were in before you started taking Ropinirole or Gabapentin with NOTHING to relieve your symptoms.

Amitriptyline is classed as an antidepressant and antidepressants can help sleep if that's a problem. It's not used much these days for depression, there are more modern alternatives. However it is still used for chronic pain e.g. as in arthritis, nerve pain and fibromyalgia.

If you have a problem with sleeping, a benzodiazepine might be more helpful and these are recommended for insomnia with RLS (see NICE guidelines below).

To put it rather dramatically, amitriptyline for RLS is no more effective than dolly mixtures (smarties, M n Ms, a choclate fireguard etc).

BUT it may make your RLS worse.

I have to ask you a couple of questions in case there has been any misunderstanding.

A) Have you at any time been officially diagnosed by any doctor with RLS and is this in your medical record?

B) Does this doctor accept this diagnosis or are they saying you do NOT have RLS or are they saying you have some other condition?

If you do not have the diagnosis, are you sure you have RLS

Below are some links you may find helpful

This is a link to the the NICE guidelines on the treatment of RLS, UK doctors should prescribe treatment according to these national guidlines if they work in the NHS. Read the section on "What drugs should I consider to treat restless legs syndrome?"

cks.nice.org.uk/restless-le...

This is a link to some information on "augmentation"

rls.org/file/what-is-augmen...

You need tlo be very assertive and help yourself. Ask to see another doctor at your GP surgery. You ARE entitled to. Print out and take this information from the links with you to see the doctor. INSIST on seeing another doctor.

IF there's any problem, then you are entitled to make a complaint about the doctor either to the GP surgery itself, they will have a complaints procedure. or to NHS England.

This might take some time, I hope you still have an adequate supply of Ropinirole and Gabapentin and if you get them on repeat prescription, if your repeat prescription for them is still active, I would order some more now,

You need to ask to see or write to the GP surgery "Practice Manager" to complain to the GP surgery.

This is a link to how to complain to NHS England

england.nhs.uk/contact-us/c...

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Just to add to the above advising against this medication. It will make your RLS worse and it's a known issue. I've tried it.

I take Gabapentin and codeine. They've just added Trazadone which is an anti-anxiety med that affects the legs. Had my first one last night and it completely knocked me out. This is through Guy's sleep clinic.

Could you ask yo be referred to a sleep clinic or a neurologist? You need to see a specialist. Good luck.

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I am absolutely appalled at your GPs ignorance. Ami is a tricyclic anti depressant. It is not a substitute for the medication you are already taking. I fully agree with previous comments left by others. Why do you need to change medication?

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The best thing to do would be get a Dr that has the first morsel of knowledge of RLS and not that quack that advised that nonsense.

Pippins2 is on the mark and you will find much more valuable info here than from the DR - IF you can't get a new Dr then at least point the quack in the direction of NICE guidelines and hopefully that will spare you some pain. Look for the likes of Tramadol or Targinact to help as something like that will be needed.

Also take a look at diet changes and adding gentle Iron - that will do much more to help than a much too rapid withdrawal from a dangerous drug and replacing it with a drug that will do more harm - I think I have strained my eyes from rolling them so much at the advice, (and I use that word loosely) you were given.

Good luck.

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Don’t do it! Amitriptyline is one of the meds that can make RLS worse!

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Pipps has given you excellent advice. You say Ropinirole is not working. How long have you been taking it and what dose? Why are you taking Gabapentin? Is it because the Ropinirole stopped working?

I suspect Ropinirole stopped working and your GP then put you on Gabapentin.

If you’re in Augmentation, Gabapentin wouldn’t help.

As Pipps advises, see another GP and read everything on here about Augmentation.

You may have to reduce Ropinirole slowly with the help of tramadol or OxyContin.

Only then would Gabapentin start to help.

As everyone has advised, your GP knows nothing about RLS.

The leaflet with Ropinirole sets out Augmentation as a side effect and advises reducing slowly.

My ignorant neurologist put me on amitriptyline and it increased my RLS by 1000%.

It’s poison for 99% of people with RLS. Avoid like the plague.

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It would be helpful to know a few more things as others have asked you. What is your Ropinerole dose? Do you think your RLS has become worse lately..? What dose is the Gabapentin. ? The more we can get to know, the better advise you can get from members.

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Hi my ropinerol dose is 3mg a day and my Gabapentin dose is 300mg a day

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I take 6 mg. Ropinirole RLS & Dystonia and 1800 mg. Gabapentin also.

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I also have Sjogrens Syndrome. An autoimmune disease.

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Hi, the 3mg dose of ropinerole isnt too high but you can augment on a low dose, and your Gabapentin dose of 300mgs is a low dose. The RLS experts recommend to take no higher than 1mgs for ropinerole, altho some say no higher than 2mgs. I would agree with the others , you are probably augmenting from the ropinerole, but need to wean off it slowly and leave the Gabapentin dose alone for now. Its the ropinerole that needs to be taken care of right now.

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Hi Jane I really can't suggest anything here-my apologies -Ive never heard of those drugs & never had a situation whereI've had to be weaned off a drug in preparation for another drug

Wishing you very good luck

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Very slowly👍🏻

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Amitriptyline is an anti-depressant. Everything I've read about RLS is that that class of drugs is a common "trip wire" for our problem and should be avoided. According to the RLS Foundation, the following meds should be avoided or given under strict management since they can exacerbate RLS symptoms vs. help them: The anti-nauseates Benadryl, antivert (meclizine), Atarax, Bonine; Anti-psychotics Haldol, Loxitane, Mellaril, Moban, Navane, Prolixin, Risperdal, Serentil, Stelazine, Thorazine, Versperin. Atypical Neuroleptics (approach with caution): Clozaril, Risperdal, Seroquel, Zyprexa, and with Abilify as a possible suggested alternative. Anti-depressants - ALL can cause RLS worsening, with safe alternatives being trazodone, Serzone, Wellbutrin, and possibly desipramine. Anti-histamines - BEWARE of all sedating anti-histamines especially Benadryl and OTC/Rx combination cold/sinus/cough medications; Actifed, Comtrex, Contact, Dimetapp, Triaminic, Thereaflu, Vicks cough syrup, Tylenol PM, Excedrin PM, Bayer PM, Sominex, Unisom - with safe alternatives of Claritin, Alavert, Clarinex, Allegra, and (usually) Zyrtec. Good luck!!!

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Wow. Weaning off two big medicines in one week is dangerous. If you do, do it very slowly and hopefully hey have you lower doses of each med so you can do so appropriately. If need advise on how to wean off safely, call in and ask a Nurse!

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