I have been taking pramipexole, successfully, for 2.5 years. As of November 1, 2019, it stopped working and my symptoms became. I have read posts here and see that this is augmentation, or so it seems. My symptoms begin earlier, around 5:00 pm, and I am noticing that they are affecting other areas than my legs. I have read that this drug is a dopamine agonist and that is stops working after a period of time. I am going for blood tests to check my iron levels before I see a doctor next week.
Can anyone give me advice on what my next steps should be and what drugs they have found are most effective for RLS? Thank you for your input.
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Briar2020
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Taking Pramipexole for some years, it stops working.
Symptoms get more intense.
They happen earlier in the day.
They spread from the legs to other parts of the body
You may notice that the time between lying down or relaxing and symptoms starting is getting shorter.
This is augmentation.
There are 2 possible strategies for dealing with this.
One is easier but may be less effective, the other is difficult, but may be more effective longer term.
The first is to switch from the dopamine agonist (DA), Pramipexole to an "extended release" DA e.g. the Neupro patch (Rotigotine). This is easy because you just start using the patches and stop using the Prami.
This may relieve the augmentation, it might not, even if it does, augmentation may occur again later.
The second is to switch from the DA to another "first line" RLS medication. e.g. an alpha2 delta ligand or "gabapentinoid". These do NOT cause augmentation.
This is difficult because you have to withdraw from the Prami, very carefully.
Start taking the gabapentinoid BEFORE stopping the DA. Some people might say you can't or shouldn't do this. They might say you need to stop the DA before starting the gaba. Ignore this!
The only reason for stopping the DA first is to see how your RLS is without any medication at all. If you've had RLS for years, I'd say this is potentially awful, cruel and unnecessary.
It takes weeks for a gaba to start working and it takes time to build up from a starting dose to an effective dose.
The latest recommendation I 've read is that you build up to an effective dose, before stopping the DA.
Then do NOT stop the Prami suddenly, you will most probably get severe withdrawal effects. This is a strong drug!. Like nicotine or even heroin.
Withdrawals can be reduced by slowly reducing the dose of Prami. It depends what dose of Prami you're on. I was on 540 micrograms (0.75mg). I reduced in steps of 44mcg, achieved by cutting 88mcg tablets in half. I reduced every 4 weeks, but you might be able to do it faster than that, it may be a matter of trial and error. I wouldn't reduce less than once a week.
Since the last step, i.e. from the last lowest dose to nothing is the worst for withdrawal effects, I reduced from 44mcg to 22mcg then nothing.
I was very lucky, I had no withdrawal effects, but people commonly experience considerable worsening of RLS symptoms and/or features of DAWS (Dopamine Agonist Withdrawal Syndrome) which includes anxiety depression, suicidal ideas, nausea and vomitting, hypotension etc.
I don't wish to frighten you. In my opinion it's probably better to switch from.Pramipexole to a gabapentinoid in the longer term, but it's not easy.
Taking the measures I suggest, I believe, will make that process survivable.
You will need to discuss this with your doctor. If your doctor advises you can stop Pramipexole suddenly, do NOT.
Welcome. Manerva has given you excellent advice. I can’t add anything to it except to say many of us have been in your position and withdrawn from dopamine agonists after augmentation.
It’s very difficult but once off pramipexole, the RLS will not be as ‘intense’.
Hi Briar - the only thing that has helped me is Tramadol 50 mg. It has brought on constipation for me, when before I was regular every day....no longer...I feel like sleep is more important right now....
Unfortunately, Opiates, e.g. Tramadol aren't advisable for someone with sleep apnoea as they are a respiratory depressant. Better for Briar to try a gabapentinoid first.
For yourself, I'm still wondering about you coughing all night. If you know why you cough all night if you don't take the Tramadol, and it's due to some breathing condition, then I hope you're having treatment for it as appropriate. If you don't know, then again, I suggest you see a doctor if you haven't already. Coughing at night can be a sign of Asthma. A persistent cough for more than 3 weeks, needs investigating.
As regards constipation, this happens because opiates depress bowel peristalsis. I may be telling you things you already know, but.just in case - -
Make sure you drink plenty. There are remedies you can take that help naturally and which you could take every day, e.g. lactulose or fybogel.
Lactulose works by drawing more water into the bowel. Fybogel is a "bulk forming" agent. It has a lot of fibre in it.
When I 've been at risk of constipation e.g. following surgery, I took lactulose with every meal.
You can also make sure you eat high fibre foods in every meal and eat fruit. Avoid foods that can "bind" e.g. not too many eggs.
Finally you could use Senna tablets a natural laxative. Avoid using medical laxatives regularly because in the long term they can, paradoxically, make things worse.
I use carbadopa/levadopa (sinamet) for a drug holiday when augmention starts with Pramapexole. I take sinamet for 2-3 days then go back to Pramapexole which then starts working again. I have to do this about every 4th month
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