Still no to the Targinact. !!!

[Elisse3]

Still no to being prescribed the targinact i tried my best. Even though she looked it up saw it was used for RLS. She has suggested if i can go private with a neurologist as could take weeks before i get an appointment to see mine. I don’t know how to go about it what i need to do. Looks like if a neurologist oks it they will prescribe it for me. But also the cost of going private might be something i can’t afford. I am more than upset and angry that i can be left up in the air to try to cope using what meds i have here

[Joolsg]

Oh Elisse,That is a complete cop out by your GP surgery!

As Targinact is licensed for RLS, they will not be risking their medical licence by prescribing it.

It's cruel, barbaric and heartless.

You could try emailing Professor Walker at Queen Sq or Professor Chaudhuri's team at King's and explain the situation, saying you cannot afford private treatment, but a simple letter from them instructing your GP to prescribe Targinact would allow you to try it.

[Elisse3 in reply to Joolsg]

Jools do you have the email address for either of them. Worth a try to see if they would do that for me. Thank you for the suggestion, never give up til all avenues have been exhausted. x She quoted doctors Do no harm i said what about the helping the patient !!

[Joolsg in reply to Elisse3]

[e-mail]@nhs.net

However, they don't often reply to emails, so if they don't reply, look up Queen Sq, London, neurology dept & King's College Hospital, London, RLS clinic and see if they have a general secretary.

[Elisse3 in reply to Joolsg]

Thank you 😊. x

[SueJohnson in reply to Elisse3]

The secretary's name is Jennifer Martinez. Her email address is: [e-mail]

[SurvivorD in reply to Joolsg]

Hi Joolsg. I am currently down to 0.25mg Pexola and not in a happy place as you and the other RLS sufferers know. It's a long emotional and traumatic journey. I have done withdrawal twice and given up!! This time there is no such thing as giving up. I am taking iron and Magnesium for the last month. Have tried Gabapentin and Pregabaline too many side affects. I must agree that diet definitely does play a big role for me, in the severity of my RL. I now avoid sugar, certain foods, additives, fizzy drinks and alcohol. I have just read about Targinact and am interested. Would I have to be off the Pexola before taking the Targinact? Your advice would be greatly appreciated. Thank you

[Joolsg in reply to SurvivorD]

No, you could start it now. As it contains the opioid, Oxycontin, it will reduce the withdrawal symptoms, but not completely.Pramipexole is too powerful and up regulates all your D1 dopamine receptors. That's what causes your whole body to 'scream' out for the dopamine hit.

I Really hope doctors learn how severe and hellish dopamine withdrawal is.

Gabapentin and pregabalin don't work during withdrawal for most patients. They become effective around a month after last dose of Pramipexole. The side effects do resolve after 3 to 4 weeks, so it is definitely worth sticking to them for a month.

The only problem with Targinact,is that it is a short half life opioid. That means it only lasts 4 or 5 hours, instead of the 12 hours the manufacturers lied about.

For RLS, many short half life opioids can cause mini opioid withdrawals for many patients, especially if they metabolise opioids quickly.

So, some patients can take Targinact once or twice a day and it works.

Others need to take it every 6 hours.

The average effective dose is 30mg.

All set out in the treatment and medic page of RLS-UK website.

Your doctors should offer a low dose opioid to settle the withdrawals. Codeine, hydrocodone, tramadol, oxycodone are all possibilities.

I used kratom and cannabis for my withdrawal in 2016. Kratom was legal, cannabis illegal at the time. The reverse is now the case.

[SueJohnson in reply to SurvivorD]

Since you have given up before you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it.Then reduce by that amount every 2 weeks.

[Dotmowatee]

Can you complain strongly to the practice manager or change doctors ? This is ludicrous, it even says in the patient information leaflet for targinact that it is prescribed for RLS. Have you got a good local pharmacist to talk to ? They can be very helpful.

[LotteM]

So sorry to hear this, Elisse. How are you coping? You sound militant, but I can imagine it wears you out, both physically and mentally. I can't offer much more than empathy.

[Drls]

hello Elisse, when I wasn’t getting anywhere with my nhs Gp I paid for a private GP appointment and that is how I managed to get my first buprenorohine patch prescription which my nhs GP then agreed to carry on.

A private Gp appointment is about £60 I think, ( maybe £80) most private hospitals do them. At the the very least you would have access to a health professional for 30 minutes to talk through exactly what your options are and vent a little regarding how you have been left high and dry. They might also be able to advise you regarding a private neurological appointment.

If you have a Nuffield hospital near you they are easy to deal with. You can look at the details of the gps online and pick one that you think you can relate to.

I know it’s terrible that you have to pay to get listened to properly but I’m afraid that is the reality of the health system at the moment.

Good luck - Dawn

[Elisse3]

Thanks you all your replies and support. I will be trying to email the two doctors as suggested by Jools. I am giving my brain a rest today , then regroup and go back into battle. As that’s what it feels like a battle to get what is already there to be prescribed but got to jump over mountains to get it

[LotteM]

Elisse, I know you don’t like (the idea of using) kratom. But do keep it in mind if you get desperate. Even if only for a short time to tide you over.

If you do want to try, get in touch by pm and I’ll guide you. You may remember that -like you - I also react to small doses of medicines, although I seem to tolerate meds a bit better than you.

[Elisse3 in reply to LotteM]

Kratom scares me , i don’t know why maybe because it’s not regulated if it makes me ill how would i explain to a doctor what made me ill. Irrational thinking ? maybe. 😊. So i am not there yet to try it. But if i do you will be the first one i will pm Lotte x

[LotteM in reply to Elisse3]

I just told my doctor about kratom.

She has her limits, e.g. thought I was too young for methadone (59 at the time and 4-5 years into an unsuccessful search for a reasonably effective treatment for my rls), but didn’t blink when I told her about the kratom. I explained why. She asked why I didn’t want to continue to use it (I prefer regulated and tested stuff and to have an escape if I needed one). A while later I got onto the buprenorphine. Which she didn’t know of when I mentioned buprenorphine, but she knew about Temgesic.

I am not trying to push you. At all. I was surprised too, that I told about it and that she responded in quite a normal way. Sensible doctors do exist, probably quite a few out there.

[Elisse3 in reply to LotteM]

I haven’t mentioned kratom to my doctor wonder what response i would get. Probably shock horror. lol Its ok you are just trying to help me 😊.

[ELLSBELLS]

So sorry you are having such a dreadful experience with your gp. As others have said I would write a strongly worded letter to practice manager as Targinact is able to be prescribed for RLS,. It is a form of cruelty to deny you medication which could alleviate our symptoms. I always wish that people like your doctor will one day suffer as we do and meet medical professionals who subject them to similar treatment.

[LotteM]

Elisse, how are you doing? Coping? Getting anywhere? I sure hope so.

[Elisse3 in reply to LotteM]

Hi lotte i have emailed to one of the doctors that Jools gave me and Sue gave me the secretary’s email address and explained it all. Not heard anything back yet. Will have to try try the other one soon. I am just about coping not getting much sleep at night napping when RLS lets me in the day. Thank you for asking I am in bed now but know i will be up sooner or later. Will say night night x