6mg or bust.

[badia1]

my doctor felt that my dose of neupro was inadequate. he is board certified in neurology, internal medicine, sleep medicine and psychiatry. he and his brother have 20 years experience with rls patients. the only side effect i have is sleppiness at various times during the day. parkinsonian patients are using 8mg patches. granted, its a different disease, but someone is tolerating these doses. the only alterntive for me was opioids. not a great choice. at age 78, i put them last on my list.

[Hidden]

Hi badia1 the problem with the dose you are taking, (as far as I know) is that 1 - Neupro patch is licensed for use at a max of 3mg for RLS and although Parkinsons suffers go higher when RLS patients use higher doses they run the very real risk of augmentation - the symptoms get worse. I do appreciate the experience of your Dr however be careful the of the side-effects. I have my wife watching me for any of what they call Impulse Control Disorders as people have lost their savings through spending or their relationships through infidelity so make sure someone is watching you!!

Why have you a problem with opiates? I really don't think addiction is going to be an issue and they have less side-effects, less seriously nasty side effects anyway than dopamine agonists. They also work very well in my experience.

I am sure Iron and other medications have been checked and ruled out? There is info on treatment, (link on left side of page) here:

rlshelp.org

There are some self-help tips here:

rls-uk.org/#!managing-rls/c...

take care

[nightdancer in reply to Hidden]

AND, RLS experts, international and otherwise, do say and I have SEEN it, DAWS or dopamine withdrawal syndrome is likened to withdrawal from cocaine. I have woman in one MY groups who made a video journal of her withdrawal journey from dopamine meds, and on Day 24, she still was at the pint that she wanted to die, and the videos are extremely disturbing, to out it mildly. This is all from being on too high of a dose of dopamine.

[beady3]

Hi Badia,glad you are with us because it's the best ,all I will tell you is I am 80 in a few days and had rls for 46 yrs so had had so many meds for rls ,what I am on now is 1 patch and 1 Tramodol and it is working brilliantly

[Madlegs1]

I agree with Raffs. And I've ranted enough on this site about misguided attitudes to opiates. I'm almost 70yrs old and have finally found peace with Oxycontin.

Get some quality back into your life ans good luck with coming off your current meds.

[nightdancer in reply to Madlegs1]

I have tried EVERY med on and off label for RLS. have had 4 back surgeries and 2 neck surgeries, and have found that my pain meds which are slow release morphine and hydrocodone ( not available in the UK) plus Clonazepam and a sleep med are the only things that have kept me sane and able to sleep for the last 12 years. In the US we have narcotics contracts, both you and your doc sign it, it is agreed that you will get your meds only from that ONE doctor, unless you have surgery and require extra meds for better pain control, (to avoid doctor shopping) will use only one pharmacy, and the patient agrees to submit to a urine test to prove medication adherence. I have been on the same dose for 12 years, never had to up it, except in post-op times, and do skip a couple of doses here and there to avoid building up tolerance. There is a difference between addiction and tolerance, and RLS patients are found to be very adherent to their pain med use, the abuse level is very low, and it is usually because someone is using them that probably had an issue with opiates or other drugs earlier in life. The RLS specialists and experts from the IRLSSG (International RLS Study Group who set the therapeutic doses for dopamine meds for RLS) all are leaning strongly towards using pain medications for RLS control. When used properly, they actually have less side effects than some of the RLS meds. Dopamine side effects can be brutal on some people, like me. They make me violently ill, and when I say "violently", that is exactly what I mean. So, different meds for different people, but high doses of dopamine, we see the issues every day in all of my groups and the other ones I help out with.

[Hidden]

I completely agree with raffs, you shouldnt have been given a 6mg patch for RLS. It might be working now, but you run a real risk of augmentation at that dose and when you do augment, getting of that high dose will be a nightmare, the withdrawals from a dopamine med are horrendous for most people, then you will need a strong pain med like Tramadol, to help with the withdrawals. Parkinson's people use a higher dose patch but DONT experience augmentation as we do with RLS. There is nothing wrong with taking pain meds if you have no history of addiction and taking them when you are older should not be a problem, lots do.

[John_naylor]

I upped my patches and had a couple of nasty falls (my blood pressure is low). I soon augmented and now am on Tramadol 100mg - bliss! No RLS currently, just some insomnia.

[malcolm_one]

If you get agamentatiion you will then have the process of detox from the patch. A painful process

[nightdancer]

Parkinson's patients can go as high as 16 mgs on the Neupro patch. In Parkinson's, the cause is actually a LACK of dopamine, whereas in RLS, we have enough dopamine, it just does not get thru the neuroreceptors in our brains and gets blocked. My father had Parkinson's, I took care of him at home the last 12 yrs of his life, and did as much research on PD as I did on RLS.

[Bettyboop45]

I'm on 2mg patch and the fatigue is awfull ... Doctor says this is the highest dose I am allowed