Changing Drugs

[mistral27]

I have had RLS for many years, gradually getting worse.
Ropinirole was a godsend and has kept the RLS at bay for around 4 years.
For the last few months it is not s good and I am on the maximum dose of 4mg nocte.
There are two issues. Firstly, I get augmentation. I attend meetings in the day and have to stand up. The RLS is in both shoulders and arms as well as my legs.
Secondly, after I take my 4mg I fall to sleep around 45 mins later. This is particularly awkward when eating out. I take the 4mg just before eating and have to stand until first course, by desert time I'm falling to sleep at the table.
My Neurologist switched me to Neupro (Rotigotine), two patches at same time before evening meal. He switched me back after 5 nights. I had not slept for one minute in those 5 days. It was pure torture, walking around incessantly.
So, I'm looking for help in two ways:
1) It seems to me that Rotigotine is an extended release drug 4mg/24hrs seems to mean 1mg over 6 hours which is far less than the 4mg of Ropinirole. If so then would this be the reason it hasn't worked?
2) Surely I'm not the only person reaching the 4mg Ropinirole max and getting augmentation? If so what have others done to combat it? For instance would a switch to Pramipexole stand a chance of working?

thanks

[mistral27]

Oh, one more question. Would a 2mg patch in the morning and 2mg Ropinirole at night stand a chance? My Neurologist is against mixing the two but I've read of others doing so.

[KDecker1612]

I haven't combined those two drugs myself. I have taken Mirapex and Neurontin together. I was taking the max of Mirapex a few years ago, and had to go on what they call a "drug holiday". I stopped all meds except my thyroid and neurontin for 2 weeks )HORRIBLE experience!). Then I went on Ropinorole for a year. It never worked as well for me as MIrapex, so I switched back. Mirapex worked again for me, and has for about 6 years. Now I'm getting augmentation, so here we go again! Hope you find something that helps.

[ViewsAskew]

I have had RLS for many years, gradually getting worse.
Ropinirole was a godsend and has kept the RLS at bay for around 4 years.
For the last few months it is not s good and I am on the maximum dose of 4mg nocte.
There are two issues. Firstly, I get augmentation. I attend meetings in the day and have to stand up. The RLS is in both shoulders and arms as well as my legs.
Secondly, after I take my 4mg I fall to sleep around 45 mins later. This is particularly awkward when eating out. I take the 4mg just before eating and have to stand until first course, by desert time I'm falling to sleep at the table.
My Neurologist switched me to Neupro (Rotigotine), two patches at same time before evening meal. He switched me back after 5 nights. I had not slept for one minute in those 5 days. It was pure torture, walking around incessantly.
So, I'm looking for help in two ways:
1) It seems to me that Rotigotine is an extended release drug 4mg/24hrs seems to mean 1mg over 6 hours which is far less than the 4mg of Ropinirole. If so then would this be the reason it hasn't worked?
2) Surely I'm not the only person reaching the 4mg Ropinirole max and getting augmentation? If so what have others done to combat it? For instance would a switch to Pramipexole stand a chance of working?

thanks

Since you're augmented, no dopamine agonist is going to work. It might have long ago, but you're at much too high of a dose to have it work. The max dose of ropinerole - the experts now say (so this is new) - is .5 mg, if I remember correctly. Taken up to 3 times a day, that's a max of 1.5 mg.

Rotigotine works differently, so you can't compare the dosages. But, again, it doesn't really matter. Once you augment like this, when you switch to another doapmine agonist (this is anecdotal based on what people tell us here), it seems that the next one never works at all, or even makes you augment more.

There is only one way the doctors have discovered to treat it. Stop the DAs. All of them. Completely. Cold turkey. And, use an opioid in its place for 3 to 4 weeks. As the symptoms decrease, decresae the dose of the opioid. Once you're stable, work with your doctor to try one of the gaba drugs - Horizant (gabpentin encarbil), gabapentin, or Lyrica (pregalalin). Horizant (name in the US) seems to be working well for many.

If this class doesn't work, then you may need to take opioids for longer. Tolerance does occur, so it's good to stop them periodically - say every month for a week, or every weekend.

If you need a doctor to corroborate this, email Dr Buchfuhrer or buy Edition 2 of CLinical Management of REstless LEgs Syndrome, by Lee, Buchfuhrer and Allen. http://www.pcibooks.com/books/view/46

Hope this helps.

[rthom]

you may need to take opioids for longer. Tolerance does occur, so it's good to stop them periodically - say every month for a week, or every weekend.

Interesting idea

[ViewsAskew]

you may need to take opioids for longer. Tolerance does occur, so it's good to stop them periodically - say every month for a week, or every weekend.

Interesting idea

It doesn't seem to happen to a lot of us, but it does happen. I'm one, Doety on here is another. We just have to keep increasing our doses every 6-12 months. It took me 3 increases before I realized what it was. Once I stopped taking it regularly, I've gone 3 years without needing an increase. About a year ago, I has to start using methadone regularly again. Within 8 months or so, I noticed it wasn't working as well. I've been trying to use rotigotine, even though it makes me augment, just so I can stop the tolerance again. I hate that part of this....

[Polar Bear]

<ostra;27 - Apart from the falling asleep after 45 minutes, I am in pretty much the same position as yourself.

I have been on the max of ropinerole 4mg spread over a 24 hour period. I have little doubt that I am augmenting and get by with the use of tramadol and cocodamol.
Now that the max dose of ropinerole is considered to be .5mg x 3 daily making 1.5mg .......... I am way too high.
The thought of the symptoms and awful time that Eefall went through is really scary.
My GP is accommodating but I don't know if he will go for it with regard to the potent opiod that would be required to get me through withdrawal.
The cocodamol was prescribed for a neck injury that no longer exists but I keep getting the script cos it helps my WED.
And if I go to him to find out he may think..... hmm I didn't realise this patient was on tramadol and cocodamol !!!
Then where will I be.... up the proverbial river without any paddle.

[badnights]

polar bear, mistral27, KDecker1612: you are all in need of a good doctor. If I could make wishes come true, I would wish that all people, everywhere, who need a knowledgeable doctor had instant access to one!

Some of you know this already, but I'll amplify some of what Ann has said. When a person with RLS/WED augments on a DA (dopamine agonist like ropinirole or pramipexole), his/her level of symptoms is elevated far, far above his/her actual drug-free level. The DA makes your symptoms much worse than they could ever get on their own. When you decrease or stop the drug, you feel the full force of those symptoms, which have been growing for years, in some cases. The symptoms stay bad for a period of time, while your body eliminates the last of the drug and recovers as much as it can. This period can last a few weeks. During that time, especially the first few days or the first week, the never-ending torture combined with lack of sleep can strip you of the capacity for rational thought, indeed of pretty much all capacity.

(Even if you haven't augmented, if you stop a DA, you might experience worsened symptoms for a time.)

So far, the only way known to relieve this agony is to take opioids. Taking another DA while augmenting or withdrawing is ineffective and potentially harmful, since a very high dose will be required to address the augmented symptoms. Negative consequences of high doses can include augmentation on the replacement DA. The anti-convulsants are not effective for most (all?) severe RLS/WED cases, and definitely not effective for augmented cases. High-potency opioids are the only thing that can touch the symptoms of severe augmentation.

Your doctors need to know this. They need to hear it from other physicians. The Clinical Management book that Ann links to is a very good resource. I have scanned the section on treatment of augmentation, and added it to the post at
(also accessible through the second link below my name). In addition, the paper by Dr. Buchfuhrer in the journal Neurotherapeutics, also accessible through the second link, discusses treatment of severe augmentation. Your doctors should be happy with either of these, but I particularly like the following quote from Clinical Management:

Physicians who are unwilling or unable to prescribe potent opioids for these patients when other options fail should refer them to another physician.

[Polar Bear]

Beth - I wholeheartedly agree with you. I have printed off your links.
I lent my book (Dr Bs first edition) to someone who was suffering considerably and haven't seen it since. As it was a friend of a friend, I may say goodbye to it and hope that it served good purpose. I am about to order the new edition so I can mark specifics and use it well at a GP appointment.

I am truly working up to an appointment to discuss my ropinerole and I'm really fearful of being left worse off.
i.e. At present I have the tramadol and cocodamol. What if GP decides to do a real workout on my meds.
I've always considered him sympathetic and willing to work with me but it is a long time since I've seen him and I hope that he is as accommodating as I have led myself to believe.

For the last couple of years I've been getting repeats, repeats, repeats.

I said that I have augmented... who knows... I just don't know.
My symptoms were 24/7 before I ever took medication which started with ropinerole, I never got full cover and so gradually tramadol and codeine were added. So could it be that my symptoms are still the same as they ever were, or 'normal progression'.

My symptoms are now pretty much covered most of the time so should I just keep doing what I am doing.
My reason for thinking of seeing GP and coming off ropinerole is because of this new consideration that 4mg (used to be ok) is now too much, and that it should be no more that 1.5mg. I have been on 4mg for years. And everything that I read says that by now I should be in augmentation.

Today I have talked myself into
1. being augmented,
2. just having natural progression, doing ok -
3. ok, just on a lot of meds !!........
4. taking on board that many publications say that after being on a DA for this long I am probably augmented.

I will prepare paperwork ready for GP appt.

I also have to consider the possible effect of 4mg ropinerole long term.

[cornelia]

Like you I never knew if I had to deal with augmentation because my symptoms were there 24/7 before I even started with meds. I actually still don't know. Also, my symptoms have never been covered.

If it were me I would think very hard about changing your meds. Personally I wouldn't change it If the only reason is because all the experts/books say that your dose is too high and that you most likely are augmenting. You probably are, but maybe you're not. I mean, don't be too scary for the words 'too high a dose' if you can still live with your cocktail of meds. Maybe you should't change it until you have to up the dose again or take more of the other meds, that would be a good time IMHO.

Dr B always says that opiates work well for RLS, but less for PLM's. I always wonder whether that is the reason that some of us have to up the dose, because these PLM's will break through after some time and win. We might say that we are getting tolerant to the opiate while the truth is that the opiates are not strong enough for people with strong PLM's. I don't know if it is right what I am thinking though. The DA's just work better for these PLM's.

I digress.
Corrie

[Polar Bear]

Corrie, my reason for changing was indeed prompted by the new information that 4mg ropinerole is too high. Having said that my cocktail of meds ropinerole/tramadol/cocodamol is providing the best symptom cover that I've ever had. I do have breakthrough but I'm still so much better than a few years ago. Also I have been on the same dosages for a very long time. It is probably about 3 years since it was adjusted and that was when cocodamol 30/500 was added and I take two of these daily, at the very most. Hmm... I know what you are saying - don't rock the boat. And that's what I'm afraid of.

Ropinerole never ever provided reasonable cover and probably at that time I should have been changed to a different type of drug rather than adding further drugs.
However, it is as it is, and I'm on what I am on.

I don't believe I have PLMs. When awake, I very occasionally have a jerk of a sort and don't know if it's anything to do with PLMs, but nothing regular and nothing when I sleep.... as confirmed by hubby.

Thanks Corrie for your advice. You are the first other person I've heard of that had symptoms 24/7 before starting medications.

[ViewsAskew]

I think there is a subset of people who seem to have needed high doses from the beginning. Not sure how they would be addressed with the "new" limits.

To Corrie's point, not sure why they do. I'm not one of them - a tiny amount of DA took care of my symptoms - much smaller than what the neuro prescribed. Now, almost ten years later, I'm not taking that much more when I do use the DA. I have, though, needed to continually upwardly adjust the opioids. But, that stopped when I started taking a break from them. I've now gone three years - and not sure I need one now as long as I again start breaking it up.

I think if I were taking a high dose, I'd think about how high it started. If I originally needed more than what the lowest dose is, I'd not be so concerned.

I think those with 24/7 symptoms are a tiny fraction of our population - most doctors don't have experience with that - and it could be something is truly different about the disease. As bad as mine is in terms of how difficult it's been to treat - I rarely had WED when this all started and only had PLMS -PLMs while sleeping. And, as bad as mine is now in terms of the permanent augmentation, if I've had decent sleep and am not tired, I usually have about 6-8 hours without symptoms each day. I may have a twinge or two earlier, but it's not constant.

[Polar Bear]

I can recall the very day that I became aware of my 'legs'.
I was seated on the sofa and my son aged about 5 was stretched across the sofa with his legs on my lap.
This dreadful feeling came upon my legs and I didn't want to move in case in waken my son.
I can tell you.... it didn't take long for me to move. And that was the start of it.
I also had symptoms in my arms within weeks.

Several times over the years I mentioned it to a GP but it was never really treated and probably this is because I didn't make a big enough fuss.
It seemed such a silly symptom to be making a big deal about, even though it was a big deal to me.

It was 25 years before I discovered there was medication that could be used and it was an advert I saw when in the USA.
Drugs are not advertised here in the UK. And by this time I was pretty much 24/7.

[rthom]

Do you think the advertising would be beneficial there?
I had a similar thing in that because I had it all my life I never considered that others didn't go through what I did. In my brain it was on the same level as headaches or something, nothing you talk about because pretty much it's just a normal (and crappy) part of life that bother some folks more than others.

[cornelia]

My RLS started all of a sudden in my legs, very severe, and within 3 weeks it was all over my body. Very similar to you PB. Within days I also knew that this was to have a big impact on my life, no question about.

A year later I was on meds.

Corrie