Out with the old and in with the new

[Pennydreadful66]

I'd been on pramipaxole for many many years before it became less effective. My gp suggested Rotigotine which seemed to be the answer, however after just a six weeks or so I'm beginning to feel less confident.

Pennydreadful66

[Hidden]

Sorry to say, rotigotine is not the best answer.

Pramipexole is a kind of drug called a "dopamine agonist" (DA). DAs used to be quite popular for RLS, but the latest recommendations are that they are NOT prescribed for RLS as a first treatment.

The reason for this is because of the major complications they can cause. These are not simply side effects. They are "loss of efficacy", "dopaminergic augmentation" and "Impulse Control Disorder", (ICD).

Fortunately, ICD is not that common.

However, loss of efficacy and augmentation are. Loss of efficacy, it seems, you have already experienced and it's a precursor of augmentation.

The risk of suffering augmentation for a dose of 0.5mg pramipexole is 7% in the first year, 70% within 10 years and virtually 100% in 15 years. So it can occur in months, for others it's years. There's no predicting when it will occur for any individual, but the higher the dose and the longer you take it, the greater the risk.

In addition, people are often not told about augmentation and when it starts may just think the drug is just failing. When this happens and the dose is increased this actually makes things worse.

Rotigotine is also a DA. It also causes augmentation and ICD. The risk of augmentation with rotigotine as a FIRST treatment is less. However, you have not been prescribed it as a first treatment, you have had a DA before, pramipexole.

One possible reason why it worked at first is that the Dr who switched you from prami to roti didn't take into account "equivalent" dosages. Roti needs a higher dose than prami.

In any event switching from DA to another is not advisable, because the problems you had with the first are already happening with the second.

It's not possible for me to say if you've yet suffered augmentation from what you write, but you have definitely loss of efficacy, so you're on the way.

In which case, it's just my opinion, but it might be best to treat your situation as if you do have augmentation.

Which is this

1) Have blood tests for iron deficiency, serum iron, transferrin saturation and ferritin. If ferritin is below 75, start on an oral iron supplement.

See this link

sciencedirect.com/science/a...

2) If you're taking any other medications for any other condition, prescribed or not, check that they're not one known to make RLS worse.

Keep a diary, especially what you eat, to see if anything else makes your RLS worse.

3) Stop using any DA. I.e. wean off the rotigotine and if necessary replace it with an alternative RLS medication.

NOTE you must not stop using a DA suddenly but must reduce the dose slowly to avoid withdrawal effects which can be severe.

You will need to consult your GP about this.

I strongly suggest you read the following web page and pass this information on to your GP. It may be best to give them the link address.

cks.nice.org.uk/topics/rest...

Best wishes

[Pennydreadful66 in reply to Hidden]

Thank you for the info: i must say I'm somewhat concerned not just by my physical and psychological situation but also the process I need to go through for answers|action. I have a heart condition for which I take various tablets after having 2 stents put in several years back. Since using the patches I feel nauscious, theres a tingling sensation in my right shoulder, neck, the palm and back of both hands, legs and feet also itching down right arm much of the time. Although I am concerned I am also relieved and will contact my gp and ask him to refer me for any tests which will hopefully achieve an answer.

[Hidden in reply to Pennydreadful66]

This sounds a bit like a reaction to the rotigotine patch. It's often the patch that causes a reaction, not the rotigotine itself. The rotigotine however has side effects such as nausea.

Of course your doctor can discuss this with you.

Taking this into account and what you originally wrote about the DA failing, it might be best to discuss stopping the rotigotine.

I'm sure that they will order tests as they think relevant, but there are no tests for RLS or augmentation.

Please be aware that it may even be that your GP has little or no knowledge of these things.

[Pennydreadful66 in reply to Hidden]

That thought had crossed my mind and I thank you for the info. I intend to contact my GP today by telephone but wont get through till lunch time, folk queing on the lines.

[Hidden in reply to Pennydreadful66]

Good luck

[Covenant1962 in reply to Hidden]

Hi Manerva just wondering about the risks associated with DAs. If I was taking a low dose of pramipexole for say a month or two would I still have to wean off it very slowly, is there a risk of augmentation and also would this short period affect the efficacy of an alternative treatment like Gabapentin?

[Hidden in reply to Covenant1962]

Hi, to be honest I can't say, it's just so unpredictable.

I would say that possibly after two months you will have developed some dependency on it. In which case you may experience some withdrawal effects if you were to stop it.

I'd like to say that if you're only taking a small dose then the risk of wihdrawal effects is less, but that doesn't actually seem to be the case.

I do recall one member who was only taking half a 0.125mg tab who had such withdrawal problems that as far as I know has never succeeded in stopping it at all.

That is an extreme, but is a warning perhaps.

Hence I'd say, on balance, it's still advisable to wean off.

What dose are you taking?

[Covenant1962 in reply to Hidden]

Thanks Manerva, I’ve been taking 0.088mg for about 1 month now. I’m thinking of giving Gabapentin another try. I couldn’t handle the side effects before but perhaps didn’t give it long enough on the right dose.

[Hidden in reply to Covenant1962]

Try taking half a tab for a couple of weeks.

[Covenant1962 in reply to Hidden]

Ok will do

[Pennydreadful66 in reply to Hidden]

I am presently waiting for a message from my gp re: coming off the rotigotin patches as I do feel/believe the long term use will be detrimental in the long run but of course I need expert guidance and an alternative in order to do this. I have also read two extremely informative and encouraging articles re: RLS which sound promising.

[Hidden in reply to Pennydreadful66]

If you go to either or better still, both of the webpages linked below, you will read that the standard alternatives to dopamine agonists are an alpha 2 delta ligand, either pregabalin or gabapentin.

cks.nice.org.uk/topics/rest...

cks.nice.org.uk/topics/rest...

These pages are taken fron the UK NICE guidance on RLS for GPs. Show them to your GP, they will have to take them seriously.

You could also show your GP this web page.

pubmed.ncbi.nlm.nih.gov/274...

[Pennydreadful66 in reply to Hidden]

Thank you for this info: and noted. I have spoken with my GP and I am to be weened off the patches onto medication and be monitored. I have to admit I am nervous about all of this knowing what my experience has been since the pramipaxol ceased to benefit me. At the same time I realise the outcom can only be the best of ?

[Hidden in reply to Pennydreadful66]

What medication?

[Pennydreadful66 in reply to Hidden]

I have to see him so we can talk about it, however I'm not well up on meds on the whole, what should I be aware of?

[Hidden]

Ho, sorry, I may have misundesrtood. The patch IS a medication, but I believe you may mean an oral medication rather than the patch.

I also perhaps realise now that the doctor may have just said that rather than the name of a particular medication.

A brief outline of the medications recommended for RLS. - -

When I say "recommended" I mean medications that are advised for RLS by the UK National Institute for Health and Care Excellence (NICE) as being the best for RLS based on research evidence.

There are two classes of medication recommended equally for the "first line" treatment for the symptoms of RLS by NICE.

1) Dopamine agonists - This includes pramipexole, ropinirole or rotigotine. The patch is rotigotine.

2) Alpha 2 delta ligands - This includes gabapentin or pregabalin.

If you go to the links I previously gave you, you can see this.

Internationally, dopamine agonists are no longer recommended as the first treatment for RLS symptoms. You can see this if you go to the third link I previoulsy gave you.

Other medications mentioned by NICE are intermittent codeine if pain occurs alongside RLS or sedatives (e.g. benzodiazepines) for a short time only, if sleep is a particular problem. Codeine is a weak opioid and is best used in conjunction with 1) or 2). Sedatives generally have little effect on RLS symptoms directly.

Also bear in mind that your doctor should discuss iron therapy with you and also anything that might be making your RLS worse.

You can see this if you go the first two links I previoulsy gave you.

Here is a link to more information about iron therapy

sciencedirect.com/science/a...

You can show these links to your doctor. They may not know about these things.

If the first line medications fail for some reason then the accepted treatment is a more potent opioid. Oxycodone is licensed for RLS in the UK. However, it's unlikely that a GP will prescribe this. You'd have to see a specialist. Some mebers have been sucessful in getting their GP to prescribe temgesic, an alternative, but they'd need convincing.

Please be aware that you have the right to make a joint decision with your doctor about your treatment. They have a legal and ethical responsibility to allow this. They should not dictate to you what treatment to take.

It is no criticism of a doctor but be aware that their knowledge of RLS may be very limited because of lack of training, but they should be willing to listen to any information you give them, particularly that published by NICE for THEIR guidance.

[Pennydreadful66 in reply to Hidden]

After speaking with my GP yesterday regarding the 3mg Nuepro rotigotine patches that I've been using, I have just taken delivery of a box of 14 Nuepro rotigotine 2mg patches and a box containing 14 Nuepro rotigotine 1mg patches plus and a box containing

56 Pregabalin Zentiva 50mg hard capsules, 1 to be taken twice daily. I assume to be used in that order.

It doesnt say whether I am to continue with my present dose of 3mg patches until used or whether to stop and commence with the reduced dosage ending with the capsules?

I have tried ringing the surgery but they are closed.

[Pennydreadful66]

Today is my first day of reduced patch strength 2mg, I'm hoping and praying?