Update: Had my review appointment with... - Restless Legs Syn...

Restless Legs Syndrome

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Update

Ljs1988 profile image
24 Replies

Had my review appointment with the neurologist. She has give me a higher dose of the rotigotine patches and am back on gabapetin but only at night time now. Finger crossed this will help.

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Ljs1988 profile image
Ljs1988
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24 Replies
Mopsy1950 profile image
Mopsy1950

Good luck hope your all sorted

Ljs1988 profile image
Ljs1988 in reply to Mopsy1950

Thank you

Pippins2 profile image
Pippins2 in reply to Ljs1988

What dose did you get? X

Ljs1988 profile image
Ljs1988 in reply to Pippins2

2mg/24

Good luck LJS hope it all works out for you.

Was it a private appointment? Sid she say anything interesting to you about the RLS?

Ljs1988 profile image
Ljs1988 in reply to

No it's through the Nhs but I had to push to get there. She is really enthusiastic about it as she studies Rls, so she is convince that she will find the right balance of medication.

Kaarina profile image
KaarinaAdministrator in reply to Ljs1988

Hi Ljs,

What is the name of the neurologist and where is she based please.

Ljs1988 profile image
Ljs1988 in reply to Kaarina

based in Newcastle and shes called Dr Anderson

Kaarina profile image
KaarinaAdministrator in reply to Ljs1988

Thank you, Ljs1988. :)

Kaarina profile image
KaarinaAdministrator in reply to Ljs1988

Ljs1988,

Sounds like you have found a good neurologist to see for RLS. I wish you well with this. Good for you for pushing to get an appointment.

Ljs1988 profile image
Ljs1988 in reply to Kaarina

thank you. I had to it was going on for too long and pain was getting worse. I was sick off people telling me I just had to get on with it and cope.

badia1 profile image
badia1

I am on 6mg for the past 2 months. I'm asymptomatic. badia1

in reply to badia1

No one should be on 6mg of the neupro patch. 3mg is the highest dose for RLS.

badia1 profile image
badia1 in reply to

No one going to a neurologist will see that dose. Only sleep centers are trying this dose. There are no additional side effects or interaction with other drugs.

in reply to badia1

Having such a high dose, you will eventually have augmentation, that where the med turns against you, will make your RLS worse. I hope it works for a long time for you, but be aware of your symptoms getting worse, starting earlier and not working so well at night.

Doctors should also know about high doses of a dopamine med will cause augmentation. Then when trying to reduce of get off the patch will be a nightmare from the withdrawals. Just letting you know the facts.

badia1 profile image
badia1 in reply to

doctors all depend on the FDA for dose recommendations; let us all yawn together! neupro has the least tendency for augmentation. I was on 3mg for over 3 years with good but not spectacular results, the reason for going to the higher dose. we have a disease with no clear cut treatment and therefore needs a bit of "augmentation", if you will. none of the other FDA recommended did anything for me. foe me, it is between opiates and neupro. neupro wins every time.

Pippins2 profile image
Pippins2 in reply to badia1

I am a little confused here!!What do you mean when you say "needs a bit of augmentation "?

nightdancer profile image
nightdancer in reply to Pippins2

the word augmentation literally means "worsening of" something, and in the context of RLS, it means worsening of symptoms that can happen at any time if one is on too high a dose of the dopamine meds. So long as you know what to look for, in case you do augment at some point with your RLS.

nightdancer profile image
nightdancer in reply to badia1

The FDA "recommends" doses on the results of studies that the drug companies do and also researchers on their own. The FDA is the governing body for drugs in the US, but will put out warnings, etc, if they think a dose needs to be studied further, such as they did with Ambien. It was found that women should be on half the dose as men, but that was after the FDA gets complaints, goes back to the drug company and says "What about this?" after a million different committees meet. ;) But, the FDA schedules drugs, they do not set the dose, but you do get the FDA's recommended dose , after they have seen all of the studies.

badia1 profile image
badia1 in reply to nightdancer

How many times are you going to vote for Hilary?

nightdancer profile image
nightdancer in reply to badia1

We do not discuss politics here, and that is very inappropriate for a support group setting. Politics should be avoided, as it is can be a hot button issue. After 20 yrs of groups, I have learned that one. If you care to discuss meds in the US, then we will, but let's stay on point here. ;) I studied Pharmacology as a minor in school, and that is what I am interested in discussing on this thread.

Ljs1988 profile image
Ljs1988 in reply to badia1

hopefully ill get there soon.

John_naylor profile image
John_naylor

I went from 1 mg to 2 mg Rotigotine and when they became less effective I would keep the previous one on overnight ( in desperation!). I then passed out during the night on my way to the toilet and bashed my face. I do have low blood pressure which may have not have helped but be careful increasing the dose!

Ljs1988 profile image
Ljs1988 in reply to John_naylor

ok thanks. I cant see a difference yet with the increase or gabapentin at night yet but early days

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