Big Thank you

[riaward]

I have spent a considerable amount of time reading some of the posts on this forum and I am amazed at the support and knowledge given by its members. Absolutely fantastic.

As I described in my previous two posts, I am on 3 x 0.088 mg Pramipexole (1 I take about 4pm and 2 about two hours before I go to bed) plus 400 mg Gabapentin (200 mg I take about 9am and 200 mg I take 9pm). It sort of works. More or less ok during most nights - I get one bad night in 5/6 nights, the rest is fine.

Day times however are bad. I cannot sit down for longer than 15 minutes. I have also reduced Pramipexole by 1/2 of a 0.088mg tablet in the last few days. Having read all the nightmares on this forum relating to this medication, I do not want to remain on it. I appreciate that I cannot stop just like that and am quite happy to reduce it gradually over a period of time.

Having read about ferritin levels, I have contacted my GP and he (reluctantly) agreed to a new blood test. I have also written a two page letter to him (cannot get an appointment for the live of it). This was quite difficult. I started by writing that I appreciate that RLS is not widely known (an understatement) and that I did not want to sound impertinent. I pointed out some of the comments written about Pramipexole and augmentation. Also various comments made about the ferritin level.

My last blood test results came back: FBC14.2 and ferritin 106, both classed as normal. However, looking at some of the comments on this forum, ferritin level should be higher.

My GP was clearly a bit upset about my letter and wrote back to me that he indeed he did a presentation to his peers on exactly this condition.

He said, however, that low ferritin levels could contribute to RLS.

He did not agree for me to be referred to a neurologist. As a specialist's first question would be is what they can do different from what the literature currently states.

I feel somewhat that I may have upset him. His letter ended that we could bypass the NHS and refer me private at my own cost. I am quite possitive that the GPs in England are not conversant with NICE Guidelines, but how the hell can I write this to my GB.

My decision so far is therefore:

I stick to my current medication, but reducing Pramipexole by half say every 2-3 weeks.

I have also introduced Iron Ferrous Bisclycinate and hope this will help and up my ferritin levels

I am going to try and only take 100mg Gabapenzin in the morning and hope this will let me sit down for over lunch time. Will then take another 100mg about 4pm and the remaining 200mg 2 hours before I go to be (normally take them 09pm).

I have also some sprays - Magnesium Sleep, and Theraworx Relief Fast-Acting Spray for Leg Cramps, Foot Cramps and Muscle Soreness, 7.1oz., which are helping a bit.

I have also bought restiffic leg wraps, and although they are quite pricey, they have help me a bit. I have found that if I put them on as soon as RLS kicks in and then lay on my stomach with my feed (with the pads on them) tangling over the edge of the bed, it can help alleviate the RLS a bit after a while.

What I am absolute petrified of is that my RLS will hunt me to the rest of my life. I would like to visit a consultant/neurologist in the UK who does know something about RLS. I do hope that my fellow sufferer may know a doctor. I am happy to go private for the right doctor. I live in the South of England but am quite prepared to travel to London, if necessary. I do hope someone can help me.

thanks again for everybody's support so far. This is a fantastic forum

[HilsK]

The NICE guidelines have been recently updated (July and September 2020) .. You should have seen them before. Dreadful and based on research 10 years old. The doctors drug reference book Mimms has not though. They sadly seem to be the Bibles for the medical profession. SO glad you wrote a letter. I have done likewise AND to the neuro consultant who knew less than my GP. My GP has now done some serious research along the lines I guided him towards and we now discuss what is happening so I feel in as much control as he does!

Re specialists. I live in the north of England and we have a specialist neurological centre near us. Of the 250 consultants that work there .. not one has a specialism or depth of knowledge in RLS. The random neuro consultant I was given even misdiagnosed RLS and didn't even recognise sever augmentation due to 22 years on Pramipexole. What he reported back and recommended to my GP was frankly showed negligence.

If you find a specialist who is open-minded, knowledgeable and willing to LISTEN please tell us all. They are like pearls. There are a few linked to the major London Hospitals. However most of them have RLS clinic on Harley Street for which you need a mortgage to visit (only online at the moment) . (>£300 online) .. but because there is nothing going on in the UK they can charge what they like.

If you can afford it the top guy, Professor K Ray Chaudhuri, works from here : dementech.com/restless-leg-...

This is his summary .. and he is involved in the RLS-UK website

He is also the author of a GP guideline for RLS (guidelines.co.uk/neurology-... adopted by RLS:UK. In 2016 he was awarded the Andrew Wilson prize for services to people with RLS in the UK by RLS:UK

If you use him PLEASE let us know about your experience.

Hope all goes well

[Hidden]

Firstly an apology, as I don't know any specialists with expertise in RLS. I have heard others mention possibilities however.

As regards ferritin levels. It does seem that GPs may not be aware of the NICE guidance on RLS, but also, unfortunately the guidance makes little mention of iron therapy except to say it should be considered if ferritin is below 75ug/L. It doesn't say what level it should be.

In addition, elsewhere, it's documented that oral iron supplementation is only really going to work if ferritin is below 75ug/L. In which case, as yours is over 100, oral iron may not be helping and an IV infusion may be needed to raise it higher.

Which, I'm sorry, makes things more difficult for you. I would imagine that as you aren't suffering anaemia, it will be virtually impossible to get an IV iron infusion on the NHS, especially as NICE don't recognise it as a therapy for RLS.

This is a terrible situation! Furthermore, if you were to pursue private treatment it's something you'd have to really think about

Your ferritin is already over 100 which is the level at which 50% of people with RLS find benefit. 50% don't.

A recent study showed 60% of sufferers benefit from an IV infusion for up to 24 weeks. This means 40% don't and there's no way of telling who will benefit and who won't.

It may be better in your case to focus on the medicatiom.

As you have symptoms during the day, you are suffering augmentation as you probably realise. I can understand why you are splitting the dose of gabapentin because of daytime symptoms, but this means that really, at no time, day or night are you getting effective levels of gabapentin in your blood.

As you reduce the pramipexole further, the daytime symptoms will hopefully fade. In which case, it would probably be more effective overall to take all your daily dose of gabapentin once a day, at night.

You may also find thay your current daily dose is insufficient. 400mg may be effective when taken in combination with pramipexole, but once you've stopped pramipexole it probably won't be enough and probably isn't enough now.

When I started gabapentin it was initially for nerve pain. I was also taking pramipexole and had augmentation. I was taking 300mg gabapentin three times a day and it had no effect on my RLS whatsoever! I did find as I reduced the pramipexole, the daytime symptoms disappeared and the gabapentin became effective. I only take gabapentin once a day. I believe if I still split the dose, it wouldn't help at all.

[Histology2020 in reply to Hidden]

Hi Manerva, blood results Ferittin levels 47, GP has started me on Ferrous Sulfate 200mg x3 daily. Told to continue with the Rotigotine 3mg patch 1 x24hrs. I have developed an allergy for them. RSL affects my arms and legs day and night. Im a NHS worker, in Histopathology i standup 7.5hrs. I am losing control with this disease, cant drive or visit the cinema even sit long enough to have a meal. I dread night time, sleep in the spare room I get approx 10hrs a week if I'm lucky.

Can anyone help?

[Hidden in reply to Histology2020]

I don't claim to be a medical expert in any way, but from what I've read about RLS, from my own experience and what you will find corroborated by others in this forum, it appears your GP is mismanaging your RLS.

You are suffering from augmentation which is caused by taking the dopamine agonist rotigotine. The signs of augmentation are

- symptoms are more intense

- happen more quickly

- spread from the legs to other parts of the body

- happen during the day as well as at night.

This is documented by the UK National Institute for Health and Care Excellence (NICE)

here's a link

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

You can refer your GP to this information.

The best treatment for augmentation is to remove the causative agent, in your case, rotigotine.

You will see this stated on the same page.

You will also see that it states that the dopamine agonist can be replaced by an alpha 2 delta ligand, either gabapentin or pregabalin.

My suggestion for you is that you give this information to your GP, say you wish to discontinue the rotigotine and start on pregabalin.

Discontinuing a dopamine agonist is not easy to do and I'll give more detail later.

If you read posts on here from people who've suffered augmentation because of taking a dopamine agonist, hopefully you'll see that this is what your suffering from and this can be relieved by stopping the dopamine agonist.

Your GP is threatening your health and making it difficult for you to work by their ignorance.

If they refuse your request to help you discontinue rotigotine and start pregabalin, I would change your doctor and perhaps report them to the GMC.

There is also a problem with the iron prescription. More on this later.

[Lindy14]

Hi Riaward,

Having read your account, I'd like to support you for standing your ground regarding your need to contact him in writing.

The fact that he had done a presentation to his peers about RLS doesn't necessarily mean that they know everything about the countless ways that it presents itself.

Luckily the GP I was with until I moved was very open and admitted that he didn't know much about it and promptly referred me to a local neurologist. She was an absolute blessing and was only too please to discuss any queries I had. This resulted in me having a lot less stress, after all, it's bad enough to cope with as it is.

I agree with HilsK, these doctors do need to listen rather than "rabbit" on unnecessarily.

The neurologist I had has now left the clinic I went to at Epsom Hospital and at the moment I'm coping.

If any doctor tries to talk with me using "medico-lingo" and I can't understand, I insist that they explain what their talking about in PLAIN ENGLISH.

Good luck with your ventures,

Lindy14

[Kaarina Administrator]

Hi riaward

I have a small list of medics that forum members have recommended in the past.

Dr Alanna Hare - member of sleep clinic NHS/Private Brompton Hospital, London

Dr Graeme Wilson NHS Charing Cross/St Marys Hospital

Professor Bhatia's Clinics NHS Institute of Neurology Queens Square

Prof Anita K Simonds, Consultant in Resp/Sleep Medicine NHS Royal Brompton, Chelsea

Guy Leschziner, Consultant Neurology NHS London Bridge Hospital/Guys

Dr Peter Venn, Consultant/Sleep Medicine NHS Queen Victoria Hospital

Prof Huw Morris NHS/Private Royal Free and National Hospital for Neurology/UCL Institute of Neurology

Professor K Ray Chaudhuri NHS/Private

[riaward in reply to Kaarina]

Thank you so much Kaarina

[Patsy11011]

I am On slow release premipexole (E.R) & have been for about 6 years. I was able to go on a lower dose with the slow release & it covers me day & night most of the time. I would like to go off all meds but because I have been on a lot of different meds for about 30 years I don't think there's much chance of that. I also have 1mg normal if I need a top up for one reason or another. Also Norspan patch & Cymbalta for anxiety & depression.