For my RLS treatment I take Paramipexole. This along with other RLS treatments is blacklisted by my local NHS trust and so I have been paying for a private prescription for several years. I found out from our forum that some of you are able to get your medication on normal NHS prescriptions. I wrote to my NHS trust with all the details and they responded by asking me to take various blood tests etc and completing a questionnaire to determine the severity of my condition.
I have just received a letter from the NHS trust confirming that after careful consideration my doctor can now prescribe Paramipexole to me on normal NHS prescriptions.
This will obviously be of interest to anyone else that finds themselves in the same position.
Persistence pays!
Written by
Johnnycomelately
To view profiles and participate in discussions please or .
wow, well done you, can you also claim back the money you spent on you previous prescriptions ??, i think someone in Wales had a problem getting the drugs prescribed also,
Niah I have the same problem. The only meds I can have are Ropinerole and Tremadol, both make me like a Zombie. I have had to pay for other treatment re other problems one related and one not. I am now moving house to get out of this third world county and moving only a few miles but into another county who I know for the moment are more giving. I am almost 60 have never been unemployed or claimed any benefit and this is how I am treated after 44 years of employment.
Walking is difficult as I have a heal spur which needs ultrasound but I must pay for it. I can have a steroid injection that lasts about 5 months but only one a year, 12 months in a year so I hobble for 7 months. I will write and let you know of the outcome. JCL are you in Wales?
If i remember you are in Wales, makes me laugh, you can get free prescriptions which we cant in the UK, but seems they are saving money by not even allowing you treatment....
I know you are moving and i hope that goes well for you. But, i would have gone to my local newspaper and spilled the beans to them. I am sure they would have been interested to know how the people of Wales are not getting the treatment they need.. Also, the local MP, would be hearing from me if it was me.... We need to make a stand when we are getting a raw deal...
I know it is an awful situation but who would listen when its about RLS the media awant the Cancer stories and their are loads of people that cannot get the treatment they need for Cancer.
IM OVER SIXTY ALSO, BUT EVEN BEFORE SIXTY I GOT THE MEDS I NEEDED, YOUR GETTING THEM NOW SO GOOD LUCK WITH THEM
I cant believe what i am reading, that you couldnt get any medications for RLS from your doctor because they are blacklisted by your local NHS Trust.!!! The fact that you had to go to such extremes to now get the pramipexole approved to use for you, beggars belief.!
What a shame you have only just got this done after seeing what others take by joining the forum, but at least you can get them now and free because of your age.
I would say to anyone in your previous situation to kick up (pun intended) a stink big time. I would have been writing to my local MP telling him/her that medication was being denied to me, medication that is and has been approved to use for RLS.
I hope anyone else living where you do and has RLS is not suffering the same fate...
I'm in complete agreement with Elisse. As a RLS sufferer,a health worker and a tax payer this scenario is horrific and unacceptable. The NHS was founded to provide medicines for those who need it, irrespective of ability to pay and free at the point of need. Now successive governments (and it's not just the Tories; Labour gave us the Private Finance Initiatives now bankrupting Health Trusts) have led us to this: you need a medicine and you have to fight tooth and nail to get it. Unfortunately, this is another example where charitable groups may have to campaign vociferously to protect the well being of the sufferers they represent, in GP surgeries, locally and nationally. Times, they have a'changed...
I think is more than just times changing, that NHS Trust needs looking at, we all know about the NHS post code lottery, BUT, the RLS medications are not that expensive apart from maybe the patch...its unacceptable for a NHS Trust to deny all medications for RLS. I am so angry about this, if i knew what to do, i would be doing it. But as its not in my area, thank god i dont live there...i cant see what i can do... :(((((
Thanks for your comments - I seem to have opened a can of worms here but here's a bit more information on my particular case............
I first started taking Mirapexin a couple of years before my 60th and received the tablets on a normal NHS prescription. As I approached my 60th (and looking forward to free prescriptions) I asked my doctor if I was able to increase my dosage as my RLS conditions had become worse. He said the good news is that I could but the bad news is that Ropinerole and Mirapexin had both been 'blacklisted' by the Bucks and Oxfordshire NHS and so I would have to continue the medication on a private prescription which I have done for the last 4 years! This trust covers quite a large area of the country so I'm sure there must be other sufferers in the same boat as I was!
I am sure there are more like you in your area who have been denied meds too...
I wish i knew why that trust had "blacklisted" the meds, i dont understand at all. Its not as if that area is a poor area, they should have enough funds to allow doctors to medicate RLS sufferers. Where i live, in the south, it also covers a large area, one of our hospitals was a while back going to be downgraded as regarding emergency and ant-natal, to save money, people were going to be sent to another hospital further away..it was to stupid for words, but it didnt happen thanks to many protests. but what i am getting at is altho money seemed to be needed to be saved by the trust, it didnt affect me getting medications from my doctor for my RLS.
Someone needs to find out exactly why your trust has done this...to me it doesnt seem legal.
You might have opened a can of worms, but it gives people an eye opener that this is going on in our country, or at least parts of it...
As i said, if i lived within that trusts area, i would be not contacting the trust, but my local MP to look into it...
I do not understand this at all. Should the UK RLS Foundation not already know about this issue?? they should be doing SOMETHING. In the US, we assault the drug companies and the FDA (Federal Drug Administration) with emails, phone calls, letters, etc. the FDA had postponed the release date for a drug for RLS called Horizant in the US. We, and I mean all of my groups, plus the RLS Foundation in the US inundated them for 3 months until it got approved 3 months earlier than they had planned. They did not like the bad publicity, and we made sure all the news sites had the info, plus TV stations, and TV shows. there is always something to do. I am pretty sure that Elisse gets what meds she asks for, so they cannot be blacklisted everywhere. I ahve no idea what the "trust" even is, but it sounds like our FDA a little bit. Correct me if I am wrong.
Donna, we have NICE here which is like your FDA, the NHS Trusts are responsible for an area in the country for health...Each area has there own trust. they hold the purse strings. and deal the money out for there own area. No the RLS meds are not blacklisted everywhere, i get mine ok..
Yes the government has cut back on the money, so the trusts have less to give out, but the Trust for my area and many others have obviously managed there budget better,
I have just read an article where NICE says that no Trust should be denying expensive drugs, that is a recent article. But apart from the patch which is probably the most expensive, the other meds for RLS are not THAT expensive.
So thats why anyone who is living in an area that is denying them the medication they need, should be taking a stand and doing all they can to bring the matter to the attention of anyone who is in the forefront of knowing, the local MP..in my opinion the first port of call...
I just can't believe what I'm hearing. I take clonazepam and gabapentin for my RLS but a few years ago I worried that I was taking too much clonazepam and I tried other things. I'd read somewhere about requip and I told my GP and after a short chat they prescribed it for me. I also tried a few other meds bit nothing worked and I'm back on the clonazepam.I also asked to have my ferritin checked and that was done for me. At no time has anything ever been denied me and at no time have my GPs taken me anything other than seriously. I just assumed it was the same for everyone. It's only reading this site that I realise how lucky I've been. My GPs are excellent. My husband has a number of health conditions and is prescribed a lot of meds some of which are very expensive. A few months ago they rang him up and explained the cost of his medication and whether he felt he needed it all. When he said he did they just told him that it was fine and as long as it was helping him then they were happy to go on prescribing it. We're hoping to move house soon and I find the thought that we'll have to change GPs a bit scary.I've been with the same practise for about 20 years and I've just taken how good they are for granted.
Why are these Meds 'Blacklisted', that's scandalous!
I'll bet that's an excuse for that NHS area to reduce it's costs by spending less on medication that are not used that often, I mean that it's Parkinsons' and RLS are the only symptoms treated with these Meds, if I'm right?
I am very interested in this "can of worms" that has been opened. Thank you. I am in that catchment area and atm do not take any drugs for RLS because, thank goodness I am not bad enough to need any, as my RLS is spasmodic and although extremely unpleasant, I can cope with it as and when it decides to visit.
Good for me to know this though and what action I should take.
Kaarina
Kaarina, i hope you dont get to that stage where you do need the RLS meds. better not to take them until you really need them. But, if you do, and you get refused, if i was you i wouldnt go to the trust to ask, i would definately go to your local MP, he/she needs to know what is going on, Your local MP could change it round so that trust never refuses anyone ever again when needing RLS meds.
Unfortunately Elisse I fear you are being a tad naive. Yes, we should be contacting MPs but also be writing to local media etc. The reason I say this is simple: ultimately we have very few independent MPs in this country. MPs are PARTY (I'm emphasising not shouting there!) political and it's that party's interests that come first not the interests of their constituents. So, unless they are willing to buck the party line and/or whip (like good old Anne Widdecombe did) and they're a Tory MP you're not gonna get far because the money saving is Tory driven and they won't act against the Tory government's legislation etc. (I'm not being partisan: thesame would happen with MPs of all parties). That being said the MP may not know what's going on and, at least, you'd get an official response that could be used in a campaign. We will need a multi-pronged attack here... Other ideas could be: contacting the NHS Trust's Board (if it has one) Members or Patient Liaison staff or union reps etc. to put pressure on the Trust's management internally. We shouldn't have to beg for our medical treatment in this country.
I dont think i am being naive at all, and i have said in another comment that to contact local newspapers.
We dont know if it is moneysaving, until someone actually said it is.
I am not a person who sits back and does nothing, every avenue should be examined, if that means contacting the local MP then so be it, regardless who is in government. If they dont know its happening or even if they do, they need to know the seriousness of this condition. Maybe THAT is the problem, and its the Trust who is denying the meds. not the government.
hi tpebop, well i think its very wrong to call someone "niave" on here, we all have our opinions and ideas, and its wrong to criticise others when they are helping, we are a support group mainly, and thats really not supportive of you.
Thanks for the feedback/positive criticism Niah. If I offended Ellisse (by suggesting naivity) or anyone else on this site then I unreservedly apologise. Ellisse herself says she/we should try anything: I agree. What we face here is a potential attack on our treatment and we should be ready to defend ourselves. A lot of people think the traditional ways will work when they either have their limitations or are designed not to succeed...
I happen to have known Elisse for the last 14 yrs thru the internet, and she is my #1 cheerleader when it comes to raising awareness and email write-in campaigns , etc. She is the least naive person aboutv RLS that I know. I do not think we need to get political here at all,. not the place, although you are entitled to your opinion. but, the bigger picture is that raising awareness for RLS is not happening at ALL in England, and it is only people like Elisse, and NIah that do the most in that category with me on Facebook, plus some of my yahoo groups. let's not get political, because it does not help,. and plitics is a bad subject to get into on a web site where everyone is sleep deprived. Almost everyone has to work so hard to get their first RLS med, here in the US, too, so I know about ugly politics. ;o)
let us stick to RLs and what we know to we true and stay supportive of each other.
WOW, I have read all your comments with great interest, and some sadness and shock as well. I live in Canada where we take so much for granted, including free medication for most ailments. I'm in my seventies and take meds. for various reasons. We are on a private
insurance as well as the federal, so our medications are mostly paid for. HOWEVER, the
Pramipexole I take for RLS is not covered by either one of the insurances so I have to pay that myself. Interesting how both countries, yours and mine, have put the Pramipexole on their "blacklist", as if RLS is not really recognized. Just felt like letting you know that you are not alone in the Uk with this problem. My heart goes out to all of you who suffer from RLS and then have to 'fight' for help! Hopefully things will change soon!!
If I remember correctly, when I took this issue of 'blacklisted drugs' up with my GP he explained that each NHS Trust periodically sets up a comity to decide on which drugs to include/exclude on NHS prescriptions. I can only assume from this, that each trust has a budget for the overall prescription costs to them and so as far as the patients are concerned there are always going to be winners and losers.
ok, people, I googled "drugs blacklisted in UK" and guess what I found. Several English newspapers talking about how the NHS has blacklisted certain EXPENSIVE dugs to "help save money." Of 134 promary care organizations, half of them have this list", which include drugs for diabetes, parkinson's, so therefore RLS drugs. There is your answer and what the reason is, as bad as it is.
This article I read was on independent.co.uk/life-styl... drugs.com If this link does not work just google what I did and you will find it. tok me 4.2 seconds. ;o) You will not like it if you live in the UK.
OK Nightdancer, I have started to google as you suggest and found a lot of reading? I will spend some time over the next few days doing a bit of my own research. I don't think it's being naive to suggest wrting to you local MP. I know someone who did contacted theirs (not to do with meds) and got a great result and an enormous amount of help from that MP. How do we know what will hapen unless we try and in the case of RLS try we must and continue to make as much noise as we can!
Pramipexole for RLS
Clinical bottom line
In a tiny trial of 10 patients with RLS, pramipexole exhibited apparent good efficacy, with some adverse events, mostly transient.
J Montplaisir et al. Restless legs syndrome improved by pramipexole: a double-blind randomized trial. Neurology 1999 52: 938-943.
J Montplaisir et al. Pramipexole in the treatment of restless legs syndrome: a follow-up study. European Journal of Neurology Suppl 2000 7 (Suppl 1): 27-31.
Clinical trial
The first trial had a randomised, double-blind, crossover design, comparing pramipexole 0.75 to 1.5 mg daily with placebo over two four-week treatments. There were 10 patients. Outcomes were sleep studies, including periodic limb movement, and questionnaires about symptoms.
Results
Patients were aged 30-61 years (49 years on average). Pramipexole significantly improved some indices of RLS compared with placebo, but did not improve sleep latency, sleep efficiency, or number of awakenings. There was a large decrease in the number of periodic limb movements. Nine of 10 patients reported complete disappearance of RLS symptoms with pramipexole, and the other had a major improvement.
Nine patients reported various mild adverse events during the first week, with persistent nausea or daytime fatigue in two.
A follow study of seven patients for an average of 8 months showed no evidence of a decrease in therapeutic effect.
Comment
There is insufficient evidence on which to base any conclusions regarding pramipexole for RLS.
• in reply to
i just found this, and im having trouble accepting it, its a small trial, but i take pramipexole and it works well for me, so how can they say this, plus i know lots of others who take it with good results ????
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Pramipexole 
Does anyone get Gentle Iron (Ferrous Bisglycinate) prescribed on the NHS?
Ropinirole, Pramipexole and etc
Pramipexole
Cold Turkey on Pramipexole?
