Hi guys,
I was wondering whether there's a possibility of being fine without taking any meds for RLS once you're off Pramipex. My mother's been taking Pramipex for 7 weeks (0.25 mg for 4 weeks and 0.125mg since last 3 weeks). Since it hasn't been that long (I hope), I wanted to know whether there's a possibility.
Any advice is appreciated.
Hi again Pranjal, I think you've already had answers to this question in your others posts.
From your recent descriptions of your mum's RLS, she should have considered a replacement for pramipexole before attempting to stop taking it.
She will have withdrawal symptoms for some time, but after these have subsided she will return to the same situation she was in before she started taking pramipexole. RLS doesn't go away on its own.
Hi Manerva, thanks once again for the taking the time out. It is just something that has been too much for me to take as well watching my mum take something that is going to be a problem in the future.
Taking Pramipexole has been a problem for your mum. That problem is known. There are alternatives that don't necessarily have problems.
Suffering RLS IS a problem.
Take note of Sails' post.
It still worries me that you appear to be taking all the decisions for your mum. It's her suffering not yours and it seems your decisions are aimed at relieving your anxiety, not helping her suffering.
Hello again!
I agree with Manerva here. Although, if she wants to see how she does without a new medicine that is her prerogative. You are very sweet to want to help her out, but it all boils down to how she feels. As she knows best since she deals with it, RLS is pure torture.
I am of the opinion that, once you’ve gotten accustomed to treating RLS with drugs, doing so without them would be akin to jumping into the deep end without a life jacket and without knowing how to swim.
Everything is trial and error when it comes to RLS. It could be that, once the Pramipexole is out of her system, she’ll be fine without another drug.
Some on this site are successfully controlling their RLS through diet, so hopefully they’ll see this thread and chime in.
I would actually love to know what she has to say in relation to her RLS. Although you’ve been doing a tremendous job, would it be possible to talk to her? I remember you saying she’s not good with computers, so maybe she can dictate while you type? Just an idea....
I get your point that once you have no RLS, it is difficult to go back to a life with RLS. But she had been with this thing for over 20 years thinking that it's just something she does.
Also,
I will surely get her to write her own views very soon. For now, we're going to be visiting the doc today. Just hoping that he helps us out.
I wish her good luck at the doctors today!
I also look forward to hearing her side of things since is the primary sufferer.
I haven't read your previous posts, but to answer directly-- she hasn't been on the Prami long enough to build up a dependency, and shouldn't have major withdrawals.
The real question is why was she put on the Prami originally? If she had rls before, then she will continue to have it.
She needs to consider what was triggering the rls ,and address that factor.
I have been out of wifi land for a while. Sorry if I've picked you up wrong.
Well she had trouble sleeping for a few weeks, which I presume was mostly down to stress because my father's just had a heart surgery. The doc prescribed her antidepressant and after taking that, she had a terrible night with her legs, which is when it first came to my attention that she has got something going on with her legs. The next day we took her to a sleep specialist who prescribed her clonafit and pramipex (for her RLS). Its been 7 weeks since and we stopped giving her clonafit after just 4 weeks but the pramipex kept going because apparently our sleep specialist said that pramipex medication is given for a long time. I hadn't read anything about pramipex so wasn't so much worried until one night she decided to skip pramipex and her legs got wild. Since then, we've been contemplating ways of getting her off them more so after I found out about this forum and talked to people here.
Hello again.
I find it hard to get a fix on what's happening with your mum because of some apparent inconsistencies in what you've been saying.
Particularly, you earlier seemed to think the Pramipex needed to be stopped because your mum was suffering augmentation. Now you appear to be saying you're stopping it because when your mum skipped it one night, her symptoms were terrible.
In trying to make sense of this, in summary it seems
1 - your mum's RLS symptoms appeared, or got worse when she started on an antidepressant
2 - your mum was on 0.25 mg at some point, but you reduced it to 0.125 mg because her symptoms were worse when she skipped a dose.
3 - you seemed to think she had augmentation when she was on 0.125 mg but didn't apparently mention that she'd previously been on 0.25 mg.
I hope you got some sense out of the doctor today.
If not some things you could consider are -
1 - some antidepressants make RLS worse and in some cases it might be wiser to change antidepressants rather than start on yet another dependency producing drug. Pramipex.
2 - If Pramipex was working and skipping a dose results in terrible RLS symptoms, that suggests it's not a good idea to skip a dose. It doesn't mean it's a good idea to stop taking it.
3 - if you reduce a dose from 0.25 to 0.125 mg, you will possibly get side effects, it doesn't mean that the underlying condition is getting worse nor does it mean augmentation.
4 - Pramipex isn't necessarily a "long term drug", but idiopathic RLS is a long term condition hence requiring continuing treatment. You can't just stop treatment altogether without consequence. It doesn't mean you can't change medications.
5 - Until all possible causes of your mums symptoms are eliminated it might not be idiopathic RLS, but secondary to some thing else e.g. a trigger such as an antidepressant, anaemia or kidney problems.
5 - Dependency isn't necessarily something to be scared of. If the thing we depend on is doing more good than harm, and we retain some control over it, what's to be scared of.
I'm currently dependent on Pramipexole still, I don't crave it and I'm not taking more and more, not resorting to crime to finance my habit. I'm dependent on having an electricity and water supply, access to food, the company and affection of my wife etc. Withdraw any if those and I'd be in a mess. That doesn't mean I'm going to stop using electricity because I'm dependent on it, stop drinking water, stop eating, throw my wife out etc.
Sorry to hear about your dad. The worry of that and your concerns about your mum must be hard on you.
So you need to look after yourself as much as looking after your parents. If you become unwell, how can you keep supporting them?
How are YOU?
Hi again,
thanks for the concern and I'm doing fine. It's just not a very good time for the whole family though.
Anyway, coming back to my mum. The sleep specialist was of the opinion that she should continue taking Pramipex as supposedly people take these meds for a long long time. When I mentioned to him the idea of augmentation he did not seem too keen on listening and instead referred us to a neurologist. Again, I don't think the neurologist too might be very much knowledgeable about this. It's a real shame and I don't know how to reach out to them without hurting their ego.
My mum's kft and sugar reports were fine luckily. Though, her haemoglobin continues to be on the lower side. She's been taking iron supplements in a bid to get them up.
Hi Pranjal
Manerva has made some excellent observations.
Anti depressants make RLS much worse so consider Wellbutrin or trazodone which are safe alternatives.
If your mum was on .25 and she skipped a dose that would make the RLS worse. Similarly, reducing to 0.125 would worsen the RLS.
However, as pramipexole causes Augmentation in 80-90% of patients further down the line it is probably best to get off pramipexole now and try other meds like pregabalin or a low dose opioid.
I suggest you buy “Clinical Management of RLS “ by Drs Hening, Buchfuhrer, Allen & Lee - 2nd edition. It’s usually available second hand on Amazon. It is easy to read for lay people and is everything you need to know.
You can show to your doctors and neurologist and they should be receptive.
Definitely get your mother’s serum ferritin higher and that will make a big difference.
Pranjal. To clear up any misundetstanding, when the doctor said, " people take these meds for a long long time", it would have been better for him to say, "these meds do not 'cure' RLS.
Unlike, say, antibiotics where if you get an infection, you take antibiotics for about a week. The infection disappears (hopefully), so then you stop taking the antibiotics. The infection is gone, it's cured.
If you take Pramipex for RLS, the drug 'controls the symptoms'. The RLS is NOT cured, it's NOT gone. If you stop taking the pills, the symptoms come back.
" Long long time" may be actually the rest of your mum's life.
However, if the med stops working or makes things worse then there's no point carrying on taking it, but you have to replace it with something else because the RLS is not cured, it's still there.
From your previous descriptions, I'm not convinced that your mum is suffering from augmentation yet. So she could carry on taking the Pramipex. If she takes 0.25 mg and it stops working, however, do NOT let the doctor increase the dose. Neither should it be stopped without first finding a replacement and/or finding something to help get through the withdrawal stage.
There is a high probability though, that your mum WILL get augmentation in time. So as Jools says, it might be good to get her off the Pramipex before that happens.
However to do that, it sounds like you'll need a better doctor than the one you have now.
As for their ego - damn their ego, you have to be assertive. The book Jools recommends is quite expensive, but is worth it if you can show it the neurologist.
I hope you're right. She'll continue to take the Pramipex for now. The sleep specialist did say that we could try stopping the medicine after her haemoglobin levels are back to normal. I brought forward the idea of putting her on some other med as this one, at some point, would become a liability.
I'm hoping the neurologist is more welcoming to different opinions. I understand their ego if someone came in and told them how to do their job but it's just something that needs to be done. Hoping that we have a much better experience with him. Fingers crossed.
Good luck with the neurologist, I hope it goes OK.
Just to reiterate a few things
1) if you hurt a doctors pride, it's only their pride that's hurt. If you passively accept what they say, you could be causing yourself, (or your mum) a lot of unnecessary suffering.
2) Even when your mum's Haemoglobin returns to normal, it doesn't mean that the levels of iron in her brain are sufficient. I only recently discovered myself that a "ferritin" test is needed. My ferritin, I have just found out is "normal", but normal isn't good enough for someone with RLS, I need to boost my iron levels.
3) A "good" doctor by my criteria is someone who listens, who is willing to discuss things and sees their relationship with their patients as being a partnership rather than them being a parent to you being a child.
4) I get the feeling that you're still not acknowledging that your mum will need SOME medication for the rest of her life. If SHE decides to stop taking Pramipex then she will need something else to help her and to replace the Pramipex. This shouldn't be seen as a "liability", it should be seen as a necessity.
There may be some cultural differences operating here. I'd like to know what your mum thinks. In the UK for someone to make significant decisions for someone else who has the Mental Capacity to make decisions for themselves could be considered abuse.
Even if someone doesn't have the Mental Capacity, by law, whoever makes decisions on their behalf has to act in their "best interest" which includes considering what decision the person might make if they did have capacity.
I appreciate you and Joolsg taking the time out to help us.
Well my mum isn't interested in going to see another doc for now. She says that this RLS is something she has lived with all her life med or no med. Nevertheless, hopefully, she would be able to evade augmentation in the forseeable future.
Meanwhile, she has, however, started taking homeopathic medicines. Placebo or no placebo, if those do work, then god bless us. Fingers crossed!
Yes of course, it's her choice. I wish her well
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