Rotigotine patch

[janland]

Hi everyone..

I haven't written on here for so long but I still have restless legs and PLMd..

which is very jerky legs at night for hours on end..

Recently saw a private neurologist who said my blood results looked ok..

He ruled out Parkinson's and peripheral neuropathy after examining me...

he suggested Rotigotine patch..

I've resisted drugs so far..

10 years+...

As didn't want augmentation nor nasty day time side effects...

Could anyone help me with advice or comments please..

Thank you

Janland

[Elffindoe]

Hi Janland, you've posted the same question twice.

You may get better answers to this post, so I'd delete your other post.

I will expand on this, but I strongly suggest you do not start on rotigotine.

[Elffindoe]

Fitstly, I am assuming that you've never taken a drug for RLS before. In which case you should know that Dopamine Agonists, i.e. pramipexole, ropinirole and rotigotine are no longer recommended as a first treatment for RLS.

I'm not sure why you're seeing a neurologist privately especially when they don't seem to know the first thing about it!

The first medications now recommended for RLS are either gabapentin or pregabalin.

Please read this link.

pubmed.ncbi.nlm.nih.gov/274...

[Elffindoe]

Srcondly, he has told you that your blood tests were "normal", however did he say WHAT blood tests and did he say what the exact results, NUMBERS were?

In which case it may be that he doesn't know what the second thing is i.e. that for somebody with RLS your serum ferritin should be at least 100ng/mL

If it isn't then it's recommended you start on iron therapy.

[Elffindoe]

Thirdly, did he discuss any medicines you may he taking that might be exacerbating your RLS and what these are?

If not then, he doesn't really know anything. You've wasted your money.

You should be able to get the treatment you need from a primary doctor. With the right information they should be able to carry out all the relevant blood tests, interpret the results in relation to RLS and prescribe, if necessary a first line medication, i.e. gabapentin of pregabalin.

I suggest then that you consult your primary doctor about your RLS and give themmthe following information whichnyou will of cotse, need to familiarise yourself.

Also refer them to the previous link I gave you.

mayoclinicproceedings.org/a...

If you live in the UK you can alsobrefer them to this information.

cks.nice.org.uk/topics/rest...

The 3 main aspects of RLS management are

1). Iron therapy

2). Aggravating factors

3). First line medications : gabapentin or pregabalin.

You need to read other posts on this site. Lots of useful information here.

Such as

Don't pay somebody a lot of money to give you bad advice.

[janland in reply to Elffindoe]

Thank you so much for your advice...I do feel I've wasted my money...

Just to be fobbed off with drugs yet again..

I was in consultation for about half hour..£250... and I did feel very rushed..

It was afternoon time..3.30 pm..

I had travelled 2 hours on train plus taxis etc... which actually I couldn't afford.

He did examine my legs and ruled out Parkinson's and peripheral neuropathy... which was good...

He had a letter of referral from g.p..which stated I had refused drugs before because of augmentation and side effects..

I have taken notes of the links you sent me... much appreciated..

This has been going on for so many years..

GPs don't seem to have knowledge of plmd or restless legs... they actually don't realise how much we all suffer with it..

I'm told over and over again my blood is normal..iron levels.... haemoglobin is 134.. last September...

The gp surgery seems to have misplaced my Nov results..

The neurologist didn't want to look at any of my notes and pretty much dismissed my questions when I asked does levothyroxine or amlodipine affect the condition....no he said..

In January 21... The ferritin level was 109 ug/L..

He just dismissed my question about low blood ferritin in the brain..

Just audiod a letter to my gp in front of me and said goodbye..

I so thought I would find the answer..

Just lately.. since the appointment on Wednesday 01/12/21...

I have been looking into mucana pruriens..

I did try it sometime ago...it's an Indian bean ground up..

and used for Parkinson's..

I think the neurologist just dismissed me as another "fussy old woman"..

My daughter said not to go...

but after having no joy with GPs who only ever suggest drugs with side effects and augmentation...I thought I might get some good advice and help...

Actually your advice and help has been like gold dust to me...

Thank you so much Elffindoe..

[involuntarydancer in reply to janland]

Janland, because you paid quite a lot of money for this consultant it might be worth sending the studies that Elffindoe linked. Send them under cover of a letter indicating that you are not prepared to start a dopamine agonist in light of what the studies say and invite his suggestions for an alternative treatment.

You have a contract with this man who, furthermore, is under a professional obligation to do no harm. It is not really acceptable for him to give you dud advice which flies in the face of fairly well established principles and at the same time pocket your money. Either he knows how to treat you or he doesn’t. But if he doesn’t he shouldn’t take your money.

[Joolsg]

I fully agree with Elffindoe. You should have been advised to raise serum ferritin above 100, preferably 250 before considering meds. And he should have checked you're not on meds that trigger/worsen RLS.Most of us on DAs wish we'd never started them.

As Elffindoe advises, pregabalin is now first line treatment amongst neurologists with knowledge of RLS.

[janland in reply to Joolsg]

Thank you so much Jools...I feel really foolish for dashing off to a private neurologist...

I didn't even know who I was choosing..

All he's done is prescribed those Rotigotine patches...

Now how can I tell my gp I don't want them.....?

It's all so difficult to deal with...

Thank you so much once again..

[Elffindoe in reply to janland]

It's not good you paid a neurologist but not only that I think £250 is extortionate!

Draw a line under that.

I appreciate your reulctance to take medications for RLS and you have been reading on this site all the side effects, complications etc.

What you may not have been reading about is the BENEFIT.

Gabapentin/pregabalin have a low risk of augmentation.

They also TREAT RLS symptoms. So like me, if they do that without causing anything but mild side effects, I see no need to avoid them.

Micuna pruriens may possibly help bybraising dopamine levels, but since medicines which raise dopamine levels havevthe most complications, why would you do it?

[Joolsg in reply to janland]

You don't have to consider the meds the neurologist prescribed. Especially as you still don't know your serum ferritin/iron results. Over 50% of RLS sufferers can stop RLS symptoms by raising serum ferritin above 100, preferably 250. That should ALWAYS be the first suggestion.Amlopidine is known to worsen RLS. Perhaps show this to the neurologist and ask for your money back. An NHS hospital lists calcium channel blockers like Amlopidine as a culprit.

royalpapworth.nhs.uk/our-se...