UK Hospitals-Dopamine Agonists

[Joolsg]

I just had an appointment with a head pharmacist at St George's hospital in Tooting, London about my next MS drug treatment.We somehow got onto the subject of RLS and he surprised me by actually knowing about the disease and that dopamine agonists are bad news.

He said that St George's do NOT prescribe DAs for RLS. Their preferred drug is pregabalin. He said that even the Parkinson's neurologists have stopped prescribing them for PD.

Bart's in London are another London hospital that does not prescribe DAs.

Unfortunately, King's College RLS Clinic continues to prescribe Rotigitone, even when patients have suffered severe augmentation on Ropinirole or Pramipexole.

Two down, many more to go.

But, slowly, the word is getting out there.

We just need other hospitals to follow suit and GPs to become more aware.

[SueJohnson]

That's great !

[Madlegs1]

Slowly getting there.

Bit by bit.

Leg by leg, toe by toe and off we go!

[Elisse3]

That’s so good to hear. St George's is brilliant hospital. Tooting was my go to place for shopping when i was a teenager i lived in Mitcham many years ago. If they don’t give PD patients DA’s now do they prescribe pregabalin. ? Do we spread the word if it comes up. ?

[Joolsg in reply to Elisse3]

The pharmacist said they prescribe pregabalin or gabapentin.And yes, we should tell anyone who will listen. Sadly, every hospital is different and King's College hospital RLS Clinic is STILL advising Rotigitone to patients who have augmented on Pramipexole or Ropinirole.

As King's is regarded as the top place in the UK for RLS, we have an uphill battle convincing them to change direction.

[Covenant1962 in reply to Joolsg]

Thanks for your advocacy Jools, much appreciated

[HipHop1972]

That’s good to hear Joolsg, I have been treated by a n excellent young doctor completing his GP training and who has totally embraced what he has learned through treating me. Unfortunately he will be leaving at the end of this month and moving to pastures new.and I will be very sad to see him go as we have built up a rapport and he will be leaving with a much greater knowledge of RLS and its treatment. Know doubt I’ll be allocated another GP from the practice and we will start again.

I reported some time ago that my lower limbs had become very swollen after taking Progabalin, spoke to Doctor Thomas about it and he said he would be surprised if it was linked to Progabalin and to ask my GP to rule out any other causes, anyway it appears through various blood tests that my kidney function is not what it should be and what is off real concern to my GO is that it has dropped considerably within the space of thee days between bloods being taken. I’m now having an urgent ultrasound on my kidneys today Tuesday 9th. and the same on my heart early Feb. The ECG I had a couple of months ago was ok but ultrasound goes further.

I know they want to rule out Progabalin as the cause, it may be coincidence but the fact it’s all appeared within 3 weeks of commencing taking Progabalin raises some questions. I have not been able to contact Doctors Thomas since befor Christmas as he’s been away and only returned on the 8th Jan. but I have sent him a complete resume of the current situation and copies of my test so hopefully we can have a meeting on zoom soon. As an aside my RLS has completely gone during the day and into the evening but still wakes me up with ya couple of hours of going to sleep and if I do manage to go back to bed then RLS is sure to wake me in the mornings around 6 to 7 am. Progabalin has had a dramatic effect on daytime RLS but suffer fatigue. The other thought I’ve had is maybe years on Ropinirole and other dopamine agonist medications has messed my kidneys albeit I had been having blood tests intermittently but they were for liver function for another medication I was taking for another condition unrelated to RLS.

Anyway another day another dollar, as they say, but in this case another year so let’s see in the words of the song by Dinah Washington ( Wgat a difference a day makes, 24 little hours bought the Sun and the Flowers where there used to be rain) 🤣😎. Very melodic this morning.

Ha Ha Hiphop1972

[Munroist in reply to HipHop1972]

Swelling and oedema are recognised side effects of pregabalin and gabapentin. Your kidney function results might not be the cause of the swelling given it started when you started pregabalin. Or they could all be connected. Hopefully the Dr s will be able to shed some light.

[HipHop1972 in reply to Munroist]

Thanks for reply, hopefully the doctors can sort it out soon.

Best wishes

[SueJohnson in reply to HipHop1972]

I agree with Munroist. I have edema from gabapentin although my doctor doesn't feel it is bad enough to do anything about so I live with it and for me it is not a big deal, but hope you get it sorted out soon.

[HipHop1972 in reply to SueJohnson]

Thanks Sue, it’s just ruining my swimwear image on the cat walk.

[SueJohnson in reply to HipHop1972]

LOL Gave me a good chuckle.

[HipHop1972 in reply to SueJohnson]

I’m glad it’s what keeps me going 🤗

[Joolsg in reply to HipHop1972]

Pregabalin definitely causes leg swelling and oedema.I had both a few days after starting gabapentin and pregabalin.

There are reports of kidney problems with pregabalin.

medbroadcast.com/drug/getdr...

I would definitely ask your young GP if he'll consider a low dose of Buprenorphine. Dr Thomas would approve it, but can't prescribe it as he's in Wales.

As you're still waking with RLS, the pregabalin isn't covering it fully.

The swelling and kidney issues are concern and a good reason to switch to Buprenorphine.

Low dose helps many of us. Do discuss with your GP before he leaves. Hopefully it isn't red listed where you are.

[HipHop1972 in reply to Joolsg]

Thanks joolsg, will definitely do as you suggest and will let you know how I get on 🤗

[HipHop1972 in reply to Joolsg]

Hi Joolsg thanks for your post. I had my kidney ultrasound this morning and my bloods this afternoon. I received a telephone call this afternoon from a lovely lady GP from our surgery as she had my kidney results. It appears I have a few small cysts on each of my kidneys, she said they wouldn’t require treatment, I asked if I was likely to make my next birthday which is this month, she laughed and said barring being run over I should be fine 🤣🤣. She will phone me again tomorrow when she has the results of today’s blood tests. I just hope my kidney function hasn’t dropped any further otherwise I’m going to have to give them a jolly good talking to. I will take a screenshot of your post and link and pass it onto my GP.

It’s surprising Joolsg whenever you dig a little deeper how more and more tit bits come to light. I’ve said it before and will not spare your blushes this time, I don’t know what we would do without our two Amazonian champions. You and Sue. Anyway going to bed now as haven’t slept for the past 21 hours.

HipHop1972 🛌💤

[Joolsg in reply to HipHop1972]

I really hope all is well. The body has an amazing capacity to start healing.

Sleep and I send positive, healing thoughts your way.

[Cobobay in reply to Joolsg]

I had leg swellings, especially my ankles 1st time I tried gabapentin, but 2nd time I went back on them I've been fine and how very pleased I am to say the least.

[SueJohnson in reply to HipHop1972]

Maybe your departing doctor could pass on his knowledge to the others in the practice or at least to the one that will be assigned to you if they know who it will be or at least tell them about the Mayo Clinic Updated Algorithm on RLS and give them the link to it. Wishful thinking probably that they will pay any attention to it.

[HipHop1972 in reply to SueJohnson]

Thanks Sue, I think they will. I made up a couple of files about RLS and the Mayo Clinic. I saw a different doctor the other week and told him about the file I provided and he’s going to track it down. So in all that’s 4 doctors in the the practice I’ve spoken to about RLS so I believe there is a growing interest.

[SueJohnson in reply to HipHop1972]

That's great - the more doctors we can educate the better!

[Jumpey]

Good news.

[6236]

please tell them to educate their American counterparts!

[Joolsg in reply to 6236]

We in the UK are in a worse position, unbelievably.You have the Mayo Clinic Algorithm, which UK doctors won't accept, because it's a US document.

You also have Drs Buchfuhrer, Winkelman, Ondo, Earley, Koo, Berkowski who are all calling for change.

Our so called 'top RLS expert' at King's College Hospital, still prescribes dopamine agonists AND refuses iron infusions as he believes there's no compelling evidence they work and he believes they're dangerous.

But there is still an uphill battle over there.

I just get SO angry at their ignorance and negligence.

[6236 in reply to Joolsg]

Our problem is that most of our doctors don’t even know about the Mayo Clinic Algorithm. It seems there is no motivation for our doctors to educate themselves about RLS.

[Joolsg in reply to 6236]

Same here. It seems that legal action against doctors is the ONLY thing that will make them reconsider. Money talks. Suffering doesn't.In the UK we cant sue for augmentation caused by DAs ( no monetary loss).

We can sue for monetary loss caused by gambling/over spending if we develop Impulse Control Disorder, BUT we have 3 years to bring the legal action ( from acquiring knowledge that DAs are linked to gambling etc).

[SueJohnson in reply to 6236]

So it is our job to tell them about it.

The other problem in the US is that the recommendations have changed. DAs used to be the first line treatment and that is what they are used to.

[Simkin in reply to 6236]

Well, as you know Joolsg, you suggested I recommend to my lovely UK GP that he should read the Mayo Clinic Algorithm and he immediately took up your suggestion.

[Elisse3 in reply to Joolsg]

No sending anyone to Kings College then , can’t believe how a “rls expert supposedly “ refuses to update his knowledge on the latest information on RLS. ☹️

[Joolsg in reply to Elisse3]

Utterly horrifying that he refuses IV iron infusions when all the evidence and research shows it is highly effective, especially if given as first line treatment. Experts believe dopamine agonists cause permanent damage to dopamine receptors and if they're damaged, they don't take up iron in the brain. Just think of all those people with brain iron deficiency who could have avoided years on medication, if only their doctors had arranged iron infusions. I'm about to post an excellent article by Dr Berkowski, in which he confirms his belief that DAs cause permanent damage.

We will probably need a serious March/Campaign to force UK doctors to listen to us and STOP prescribing dopamine agonists as first line treatment.

They should be reserved for when everything else has failed and, even then, the patient should be closely monitored, the dose kept extremely low with frequent switches/ breaks.

[Elisse3 in reply to Joolsg]

I agree , some how we need all doctors to read the latest info by the Mayo clinic and USE it !

[LotteM]

Great work Jools. I am in awe of your activism and the effects you achieve. Keep up the good work.

[Merny5]

Wonderful news Jools! This change in attitude is your responsibility!👏 I know that you have been working diligently to make these necessary changes. It is greatly appreciated by all of us who suffer! You are a gem!

[Joolsg in reply to Merny5]

Sadly it's only 2 hospitals. And I can't take responsibility for Bart's. They had already stopped prescribing DAs before I spoke to them via TEAMS.But if we all keep showing the Mayo Clinic Algorithm and all the articles on DAs to our hospital doctors, we will get there. One surgery/hospital at a time.

So many more to convince Merny.

[Simkin]

As you all may remember I was sent to St George's 40 years ago as they were doing research on.RLS.In those days St George's were convinced RLS was caused by poor circulation & so they got me to wear those surgical stocking & various other things, all to no avail.

Of course nowadays we all no differently.

[HilsK]

The NICE website has now been updated in line with this yet I know that local GPS are still prescribing dopamine agonists and have total ignorance of the current practices .. as do the DRs and Neurologists at my local hospital. In my mind especially after my recent experience they are negligent as some of them knowingly cause harm but cannot be bothered to LISTEN and LEARN

[Joolsg in reply to HilsK]

Totally agree. Hundreds of UK patients have now sued their doctors, so hopefully the word will be getting out. Money talks more than patients' suffering.

[HilsK in reply to Joolsg]

How do you go about suing your doctor?

[Joolsg in reply to HilsK]

There are lots of solicitors who specialise in medical negligence cases. Many will offer a 'no win, no fee' deal. But most will expect payment. If you have house insurance that offers legal insurance, it may cover medical negligence.Some firms will be honest about your chances of success and will then take their fee out of compensation awarded.

In the case of dopamine agonists and Impulse Control Disorder, there is usually a very, very good chance of success. I know a few people that have sued successfully and recovered tens of thousands in compensation.