Unprotected patch and costing

[Shaft1952]

Hi guys has anyone had difficulty getting UK GP to prescribe rotigotine (nupro patch) due to cost compared to oral treatment, as just been looking at costing before I see GP Tuesday. I look forward to your replies as I know a lot of you have the patches thanks in anticipation shaft1952.

[Hidden]

1952, I am prescribed the Neupro patch along with Targinact.

Long story short:

I had Mirapexin in past which demented me, the side-effects for me were horrendous, I was treatment free for several months and suicidal for most of that time. I read on here about Neupro and my GP had no hesitation to prescribe, (I live in the North of Ireland which although under UK rule I don't know if we get more here than those in Britain), although historically that practice is always fine at prescribing however it has become more and more strict this past 3/4 years.

Don't forget that Targinact is also licensed in the UK:

evidence.nhs.uk/formulary/b...

Read, Read and READ - know your stuff before you go and be adamant but no aggressive that you believe this line of treatment is best.

Have you tried an oral DA before? If not he/she may go down that route, if so be careful and keep a tight eye on yourself.

Good luck, let us know how you get on.

[Shaft1952 in reply to Hidden]

Cheers raffs new I could rely on you, I reduced another 500mics of Ropinirole but think I might just stop completely tonight, and can't be any worse than last week. No sleep hardly, I don't think it could be any worse than comming of tramadol. I have codeine and zopiclone as back up to get some sleep. Just Hope I don't have to wait to long to see neurologist. She gave a talk at RLS AGM and was very good. Cheers shaft1952

[Hidden in reply to Shaft1952]

Hi Shaft, i see you are still weaning off of Ropinerole, if that was because of augmentation, then going straight back onto another dopamine med is not advisable, if augmenting on one dopamine med you will augment almost straight away from the patch. The best way if wanting to go on another DA then a long break is needed and i mean a few months.

[Shaft1952 in reply to Hidden]

Hi Elisse thanks for your reply but what do I do in the mean time. Last night had to stand up to eat my tea, I am due to go on cruise in March can't do that if legs are awful. So I need something. What would you suggest. I am using codeine to help at present. My GP is very supportive. Shaft1952

[Hidden in reply to Shaft1952]

Have you tried Gabapentin..? You can take that AND the codeine. I see you have taken Tramadol before, was there a reason for you coming off it...? As that med is what most people who are weaning off a DA take, then once the DA has been stopped, they carry on with the Tramadol, and some add Gabapentin. Or then there is the newest med which NICE has approved for RLS , Targinact, not tried it myself, so cant say how good or not good it is. Oh i see raffs takes Targinact.

[Shaft1952 in reply to Hidden]

Hi Elisse had tramadol following a knee replacement, stopping it after a couple of weeks was so bad won't touch it, had gabapentin but side effects not good so had to stop it very quickly. But thanks for your support. The support of so many people on this site is amazing cheers shaft 1952

[Hidden in reply to Shaft1952]

Oh dear, sorry you had a bad experience with tramadol and Gabapentin. So only Targinact then maybe. I cant think of what else you can try.

[Shaft1952 in reply to Hidden]

Hi Elisse I see GP Tues I am going to ask her to ask neurologist from Newcastle for advice, I am lucky my GP has been very supportive, she is going to refer me to Newcastle anyway but just to get me through my holiday, thanks for your support shaft1952

[Hidden in reply to Shaft1952]

I went off the Mirapexin cold turkey, I was so f**ked up physically I didn't even notice any worsening withdrawals! Load up on the Codeine and Zimovane and they will carry you through any other issues.

You can always push for the Neupro as you don't want to be on POTENTIALLY dependence causing drugs and would rather this approach first. From NICE guidelines they are to try a couple of DA's first before moving on to other drugs iirc so you should be fine for the Neupro.

One word of warning for those taking DA's - if you can involve someone who knows you well in your treatment they can keep an eye for any behavioural changes you might not be aware of. They are in my opinion particularly troublesome drugs but used and monitored well they do help with the RLS.

Also you may need to augment the patch with an opiate.opioid until you get the right dose of patch, (the 1mg done nothing for me the 2mg helped better but needed augmented with Targinact and the both work wellish together for me).

PS = What Elisse said, I had a break of over a year between them.

PPS = Might be worth looking at Kratom for your trip - I go nowhere without it as the travelling and small seats drive me mental and the Kratom boosts my regular regime leaving things good for the holiday.

[beady3]

Well Shaft you will get help with us if it's not want you want to hear. Sorry you are having probs big time. I can only say I had augmentation with Requip my doc had put me up to 8 a day I didn't know so just took ,I have had lots odd different meds but doing so well on the patch and Tramodol ,I think the patch is aroun £100a month if that true. The patch doesn't suit everyone but if that's what you fancy trying ask him nicely I don't say anything to my doc about this website we had words about it they don't like you to tell them anything ,good luck x

[Shaft1952 in reply to beady3]

Hi beady3 I am lucky as my GP understands why I have all information from RLS site. My background is the medical profession. Hope to get refferal to neurologist. I have a big family history of rls. My mum me all my life my 2 boys and I think my grandmother may have had it. Thanks for your support. Cheers shaft1952

[Pippins2]

Shaft 1952

I am on the Neupro patch. First of all I was on Requip ( Ropinerole ) but I felt very nauseous on it so after 6 weeks I switchedto Mirapex( Pramipexole ), did very well on it for a few years then I got augmentation from it. I weaned down to half dose by myself but couldn't get any further without a back up med so I went onto Zomorph and Pregablin. I stayed off the Dopamine meds for almost a year but I wasn't able to tolerate the high doses of Zomorph necessary to keep my RLS under control. I contacted Dr Buchfuhrer who suggested the Neupro patch, I was very reluctant to try another dopamine med at first but I knew that Neupro patch has the lowest rate of augmentation so in desperation I decided to ask my GP to prescribe it. I just told him I know it is expensive but I am here to state my case as to why should be given a go with it. I then produced information about augmentation etc which he merely glanced at, then he looked it up in his book and once he knew it was licensed for RLS he was ok about prescribing it and he put it onto repeat prescription.

I have had 4 good years on it and although I do get the occasional bad night my RLS is controlled 95 % of the time. I take a teeny bit of Zomorph and Pregablin at night for back pain.

Every 4 months I take a 2 weeks break from the patch upping my painkillers to get me through and I have a few emergency sleeping pills if needed. I think it is taking those breaks that has enabled me to keep on the lowest patch strength of 1mg. The only side effect I have is an allergic reaction to the adhesive backing which seems to be a common problem.

I hope you find this helpful

Pipps x

[stan38angler]

hi shaft1952 like pippins i started on rop then onto pramipexole went thro all dif mgs am now on 3mg patches no problems with my gp

[Twitch_1]

Just a thought. Zopiclone made my RLS much worse. Coould this be the case with you?