long read: asking for community help deciding next steps -- worsening RLS/PLMD, medications, Neurologist, no sleep, HRT

[HappyGreenBean]

Hi everyone,

I haven’t been around in a long while because I’ve been unwell and dealing with family matters. I always feel guilty popping back in after a long while but I’ve not been able to maintain any sort of consistency the last several months.

Up until I started HRT I was alright with what I was doing for the RLS/PLMD. Occasional flair ups but generally speaking, alright. Back of my mind I knew that if things got worse I had other options. But after what’s transpired over the past several months, medics have made me realise I need to tread carefully.

Can anyone help?

I’m with Prof Walker at UCLH. He’s been unsupportive, he keeps pushing that I need to go on to a dopamine agonist or Oxy with Naloxone - Targinact. I don’t feel these are best options for me. Partly because of what I’m about to explain below but also because I know what the dopamine agonists do.

Some background:

I’d been pushing to get investigations, diagnosis and treatments for a number of medical issues I’ve been dealing with. I noticed immediately consultants were asking about the codeine. Every time I’ve been refused investigations, treatments because of having codeine on my file. I’m tired of fighting and I now have permanent damage in some joints, one organ that’s left me using an ambulatory wheelchair. No matter how I explain or show the clinic letter from Prof Walker - I’ve been accused of drug seeking or having a chronic pain condition. Neither are true.

This leads me to now:

We’re not all built the same, I know some of us can handle disturbed sleep to some extent but with the other conditions I have I just can’t anymore.

I’m already on codeine, paracetamol too. I take magnesium, compression socks, hot & cold water, walking etc etc. I do it all and have tried everything including many of the other drugs (you can see from my profile).

I know that for some Targinact works well but I also know that for many patients there’s mini withdrawals and many reporting having to take it 4 x per day - no thanks. I need the sleep. And, I’m not interested in taking something that’s just going to put me back where I am with constant breakthrough RLS like now.

I’ve also been told by my GP that Oxy is perceived very badly, worse than codeine.

There’s other reasons which I don’t want to go into here because I don’t think it’ll add to the forum, discussion, help for me or others.

Then there’s Buprenorphine or Methadone —these too have perception problems!

These are my final options as I've tried everything else: Buprenorphine, Methadone, Targinact

I feel lost and don’t know what to do. I’d very much like to call upon this community to help me work this through, if you think you can:

1+ should I push to be referred to another Neurologist as Prof Walker isn’t helping? Unsure how to approach this with my GP - any advice welcomed.

(Feel free to share Neurologist recommendations please!)

2+ should I push to go on to Buprenorphine or Methadone?

3+ those on Buprenorphine or Methadone, have you found issues with other consultants and Drs when they see you’re taking it?

4+ is there anything that I’m missing? Like changing type of HRT?

Again feel free to share Neurologists you’re seeing who are helping you, I know some say Guy Leschziner has been really helpful. Anyone other Neuros? I'll happily go privately if it means I can get the help I need!

Thanks for taking the time to read and hope everyone's legs aren't jumpy!

[SueJohnson]

At Barts in London Dr Gavin Giovannoni and his team will prescribe methadone.

[Joolsg in reply to SueJohnson]

Sadly, Gavin Giovanonni and his team don't take on RLS patients. They prescribe methadone to their existing NHS MS patients who also have RLS.

[HappyGreenBean in reply to SueJohnson]

He's no longer there Sue He apparently retired. And, as Jools said they don't take on RLS patients. But thank you kindly! Really appreciate it.

[SueJohnson in reply to HappyGreenBean]

Darn - Another one I have is Dr Novraj Dhanjal National Hospital for Neurology and Neurosurgery recommended by Ephemera said he asked GP to prescribe buprenorphine.

[HappyGreenBean in reply to SueJohnson]

Thanks my dear! I'll add them to the list, very much appreciate this.

[Joolsg]

It is extremely concerning that most UK neurologists are STILL pushing dopamine agonists.However, Targinact does work well for many RLS patients. It didn't for me, but it might for you. I suspect Professor Walker expects you to try Targinact first.

So your options are to accept Targinact and ask for 5mg four times a day. If it doesn't help after 2 months you can then ask for Buprenorphine and Professor Walker will prescribe it.

Or you can switch now to Dr Robin Fackrell in Bath or Dr Chris Murphy in.Salford and ask for Buprenorphine.

[HappyGreenBean in reply to Joolsg]

Sigh. I think you might be right. It hadn't occurred to me that he was more-or-less trying to force me into accepting the Targinact. He said he only prescribes 2 daily doses and they last for 12 hrs. When I said I'd read from many patients that the 12 hours causes withdraws he became very annoyed and asked me where I got my information from.

He hasn't organised a sleep study despite saying it was 'imperative' that he saw how I was sleeping throughout the night.

My GP is saying I'm going to get a lot of push back from other consultants about going on any of these meds - this is truly exhausting. We need better care and treatment options and we need better education about the use of these medications for this blasted condition!

[Joolsg in reply to HappyGreenBean]

I completely agree. It's just not good enough.Oxycontin does NOT last 12 hours. Just watch the Dopesick docudrama. The Sackler family lied to the FDA and said Oxy lasted 12 hours. It does not. That's why the opioid addiction crisis happened!

So if Professor Walker doesnt believe the anecdotal evidence from so many patients on this forum, he should look at the legal case in the USA against the Sacklers ( who created Oxycontin).

Sigh.

[HappyGreenBean in reply to Joolsg]

I think I told you about how I lost someone I love to Oxy. I lost another loved one just a little while ago. It's part of the reason I don't want to go on it.

I haven't heard from him in like a year. Despite repeatedly pushing to have a followup and for him to address my concerns. My GP received a letter from his sec saying I could try Targinact or like he keeps saying I can try one of the dopamine agonists and nothing more. No details about prescription, nothing.

Genuinely don't think he's interested to learn about it. This is my impression. Obviously others have reported better outcomes with Prof Walker.

Also -- if I may -- f*ck the sacklers! There's a decent book about this, I'll have to have a dig in my memory to see if I can dig it up.

Thanks for summarizing everything J! For us it's all consuming, having an outside party go through it and bullet point it is very helpful.

[SueJohnson in reply to HappyGreenBean]

I hate to say it but you could accept the prescription for Targinact - fill it not take it, and then tell him it didn't work after the appropriate time and see if he will prescribe buprenorphine.

[HappyGreenBean in reply to SueJohnson]

Oh, I'd never thought of that. Huh. I'm going to rest (ha!) on this and then make a decision on how to proceed. I've emailed Prof W already asking for an update on when our follow up and sleep study is meant to be after a year of not hearing back from him -- if he doesn't get back to me within the next 21 days I'm thinking I'll line-up another Neuro's input and go from there. Food for thought, thanks Sue!

[DesertOasis]

Happy, can you tell me why you are on HRT when you’re telling us how much worse it makes your RLS? Am I missing something in your medical history?

[HappyGreenBean in reply to DesertOasis]

I'm going through menopause. And, I require it for other medical reasons.

[DesertOasis in reply to HappyGreenBean]

You’ll have to explain exactly what those other medical conditions are and how HRT is a good treatment for them. This is about the 100th time I’ve had this discussion with women on here. HRT is not a life saving drug like insulin. It does however seem to be a life wrecker. RLS is the greatest darkness. Darker than menopause - I think.

[HappyGreenBean in reply to DesertOasis]

HRT in my case is a life saver and as much as I'm thankful for your enthusiasm and concern I won't be disclosing all of my medical history here.

My conditions have all been assessed and I'm already doing everything that's been prescribed as treatment for me for these conditions - despite the damage I'm left with because of the codeine biases. HRT is one of the treatments that's included for me as it stands right now.

I will need to be on HRT, I'm open to people disclosing options in HRT but I won't be coming off it unless the PLMD/RLS can't be treated. At that point I'll be opting for euthanasia.

[DesertOasis in reply to HappyGreenBean]

Yep, you’re right, it’s your choice. news.cancerresearchuk.org/2....

[HappyGreenBean in reply to DesertOasis]

Womp, womp

From your own source: cancerresearchuk.org/about-... 'Cancer risk from HRT is small and depends on many different things.'

It's extremely disingenuous for you to act as though you're concerned but in fact not my Dr nor my oncologist.

[DesertOasis in reply to HappyGreenBean]

I “genuinely” hate what HRT has done to people every bit as much as others on here hate what DAs have done to people with RLS. HRT has unknowingly driven women to DAs almost as much as SSRIs. I have a love hate relationship with HRT. I truly believe it’s great for our lousy dopamine receptors, that get even more lousy with menopause, when that liquid gold (estrogen and progesterone) dries up. Those hormones keep our receptors in tip top shape and is likely the reason our RLS gradually gets worse after menopause. If we could duplicate that pulsed, nano-particle way that Mother Nature delivers those hormones then I would be a big supporter. As it stands now, it’s just too painful for us with RLS to take HRT. It makes our RLS dramatically worse, and makes us go crazy, even to the point we accept DAs. We need for the world, both patients and doctors, to understand all this. Maybe if you can figure out a way to take tiny amounts of HRT each day, and stop for a few days when symptoms get worse, then you can have the best of both worlds?

Let’s see if I can find that article on estrogen and D2 receptors.

Here it be: link.springer.com/article/1....

HRT might be the ultimate answer for us women with RLS if we can reproduce Mother Nature’s delivery system

[HappyGreenBean in reply to DesertOasis]

I understand your frustration but I'm not considering DA. I'm very well versed on estrogen and dopamine. But will happily read what you share, I'm always up for learning.

All that said -- some of us don't have choices that are afforded to others. We're not all built the same way. My options are trialing one of the 3 medications listed above. Dealing with the biases and prejudices presented to me based on taking these medications.

[Eryl]

4 - there is something you're missing and that is that food can cause chronic inflammation and inflamed nerves are very sensitive and can give off signals percieved as RLS or can cause anxiety, depression and a whole host of other mental problems on top of the hypertension, COPD, IBS etc problems.

Google 'foods that cause inflammation' and change your diet to avoid them and there's a good chance that you'll notice a difference.

[HappyGreenBean in reply to Eryl]

Thanks Eryl - my diet is supreme! I've been a healthy eater most of adult life to the point I annoy others and my GP/Drs are always impressed. My diet is very anti inflammatory, no processed foods.

Appreciate your input and it's of course something for all to consider.