I have been on increasing doses of Pramipexole for 22 years .. suffered many side effects which have been treated as separate conditions by British GP's and medicated separately. I have been in trouble medically since around 2009-10 .. significant increasing RLS and for the last few years .. whole body symptoms and at times incredible pain and uncontrollable limb/muscle movement which has been totally disabling.
Finally I got to see ( in a video appointment) a consultant neurologist, cos the GP knows nothing beyond the list of classical symptoms you can read anywhere. But I seem to have a Consultant who is telling me that the hellish symptoms I have been getting which are like RLS on steroids, are nothing to do with RLS and are due to tiredness and exhaustion from my lifestyle of being a carer!
He cannot see why I have to come off Pramipexole, after 22 years ... and is so patronising and condescending. I am challenging him on all of that!
However, he has suggested a withdrawl program based on starting Pregabalin and slowly increasing its dose up to 500mg, 25mg at a time before withdrawing from Pramipexole ... simultaneous with blood tests and Iron, Vit B12, Vit D additions
I have been on Pregabalin for 3 weeks (now on 75g) and it has reduced the constant pain level I was in BUT with zero confidence in this British consultant .. and he is not alone in his behaviour or ignorance .. I am gravely concerned.
Any advice here where real human beings totally get this issue would be so welcome.
Thank you
Written by
HilsK
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Yes! That's what I am scare of. I am a sole Carer for my hubby who has dementia and other issues and needs my support day and night. It has been an impossible year but has to get better ... That's what I am trying to focus on, as at times frankly in the past few months, my mental health has been really challenged by the whole scenario.
Hi I'm so sorry to hear about your situation, to have this horrible rls is bad enough but taking care of your husband and yourself when you are totally exhausted must be very hard for you. I really hope you will be able to get your medication sorted soon.
HilsK Hi, I am so sorry to hear that you are caring for your husband who has dementia whilst struggling with severe RLS. You have had some excellent information from the members on here regarding your RLS. I used to be a career for my mum who had Vascular dementia and Alzheimers and know how difficult it was for me. If you are interested I can recommend a good, supportive, non judgemental support group for carers of loved ones with dementia. It is on Facebook and a closed group so only members can see what is posted etc. I found it helped me keep my sanity in very difficult times. Should you be interested just send me a private message for details
Pipps x
Hi HilsK
As you probably know your severe RLS symptoms are most likely augmentation, which apparently the neurologist is ignorant about. This is not surprising. If you wish to educate him/her you can refer him/her to the NICE RLS guidelines which I recall giving you a link to before.
You could also refer him her tp journal papers about augmentation.
However, if he/she is arrogant as it appears. This may be a waste of time.
The suggestion that you start on pregabalin is a good one.
Be aware however that -
1). It takes 3 - 4 weeks to start working.
2) It's not going to be very effective whilst still suffering augmentation. It's really only going to work fully AFTER reducing the pramipexole.
3) The minimum effective dose of pregabalin is 150mg. The NICE guidelines recommend a maximum.of 300mg for RLS. Some say 400mg, but in any event 500mg is probably too much.
It's just a suggestion but as long as you're getting prescriptions, I'd increase to 150 - 200mg, no more. You don't have to tell the neyrologist that.
And yes! I referred my GP to the NICE guidelines which he had no idea about!!!
I also wrote with the references you gave me a bit about this for all the medics and those involved in health care .. physiotherapists who seem to come into contact with clients with RLS as well as the Pain Relief clinic.. Thinking of making a billboard about it!!
I am mystified as to how a neurologist can be so ill informed .. but I guess he's the type of Dr who sees everything in neat boxes and never looks over his shoulder at the diversity and uniqueness of how human beings express what is not quite right with the way their bodies and minds are working!
Quite right, we don't always fit into the alogorithmic way doctors see us.
Later
I'd also suggest you wait one more week then start reducing the pramipexole.
If any doctor suggests you can't take pregabalin and pramiepxole at the same time, this is nonsense.
If any doctor says you can suddenly stop taking pramipexole suddenly then they are incompetent.
If any doctor suggests you can withdraw quickly then they are ignorant.
It may take you up to 10 months to withdraw from your dose of pramipexole. You may need a continuing prescription of it for up to that long. If your GP refuses to continue prescribing it for that long you will have to complain. It may be a good idea to build up a bit of a stock of extra tablets, if you can.
Reducing pramipele will cause withdrawal effects, i.e. temporary worsening of symptoms and sleeplessness. These will probably start 24 - 48 hours after each reduction but should settle down again. Each time they settle down you may find that your RLS is less than the previous time they settled down. By the time you've reduced to 2 - 3 times 0.088mg tablets. You should be noticing a difference.
As a guidelines I suggest reducing the total daily dose in steps of no more than 0.044mg every 4 weeks. That is half a tablet. If withdrawals settle in less than 4 weeks then you can make the next reduction, but overall, it's probably not best to make another reduction in less than two weeks. When you get down to ONE tabnlert, it may hjelp after that to reduce by 0.022mg each time, i.e. a quarter of a tablet.
This will help reduce withdrawal effects.
People who have also suffered an Impulse Control Disorder (ICD) as a result of taking pramipexole are also at risk of additional withdrawal effects so it's better for you to reduce the dose very slowly.
This is to try and avoid DAWS, (Dopamine Agonist Withdrawal Syndrome) which can be very serious.
Some information..
If you wish for your doctor the NICE RLS guidelines state in relation to
pramipexole.
"Before commencing drug treatment, ensure the person is aware: Of possible treatment complications. In particular, augmentation, loss of efficacy, and the risk of impulse control disorders (ICDs)."
They also state
"Drug dosages should be kept to the minimum required to ease symptoms as the higher the dose, the greater the risk of augmentation."
"If augmentation develops, stop the causative drug. An option is to switch to a non-dopaminergic drug such as an alpha-2-delta ligand, but it is advisable to seek specialist advice."
A point in general for anyone coming off any " addictive" medication, is that the beginning of the journey can be a lot easier than the final furlong. Believe me. The last few weeks can be pure utter unadulterated HELL. ( I know-- I've been there) but so worth it in terms of self worth and achievement .
During the last while, take plenty of vitamins, especially vit C and D. And take time off, if possible. ( I appreciate that may not be possible for some, but that is the time to call in all the IOU's and favours.
I have now read the NICE guidelines. These are written based upon European studies carried out mostly in the period 2012-2014. As the drug was only introduced in 1998, no one has explored what has happened to those of us who have been on it for the full length of its use in the UK. ALL the NICE recommendations were last updated in 2016.
I display ALL the symptoms they relate but in the last 3 - 4 years and specifically in the last 14 months the whole thing has taken on a new HELLISH turn. So there is NO information anywhere what happens to those who have been kept on this drug in blind ignorance.
In the STATES Pramipexole is now withdrawn as the front line drug to treat RLS .. in the UK it continues to be the front line drug as per the NICE guidelines.
No one seems to give a damn about the extraordinary horrible twist this has taken for me. And even American/Canadian research acknowledges that statistical evidence does not go beyond 14 years of the use of this specific drug. I am SICK AND TIRED of being considered as exaggerating, 'making it up' etc etc by the medical profession. Or it being put down to social pressures and stress. It is making me feel very angry indeed.
Regular blood tests are part of the monitoring of withdrawl. I cannot even get a first baseline blood test until 7th September .. The first available appointment booked on the 18th August .
I hadn't realised, but of course it must be so, that this is also happening to those with Parkinson's on Pramipexole .. often much greater doses than I am on.
Could this warning about NICE regulations go on a header post about RLS. People need to know about this ignorance??
I agree with you. If he knew anything about RLS he would INSTANTLY know that the symptoms you described are severe augmentation. Nothing to do with your job.
I’m not at all surprised.
You’ll just have to rely on the info on here and reduce pramipexole very slowly.
500mg of pregabalin is too high- the maximum for RLS is 300mg and once off pramipexole you would probably manage on 150-200mg.
Sadly another arrogant, ignorant neurologist.
I despair.
Similarly my Dr started me on Gabapentin 300 mgm twice a day in exchange for the Pramipexole 0.5mgm twice a day. Because of augmentation I had cut the Pramipexole dosage myself only to suffer terrible symptoms with the unrelenting RLS. I could not sit still, could not lie down or sleep or ride in a car Lo ver than 30 minutes.
I was genuinely surprised that my Dr just switched me from one med to another with no tapering of dosage. Clearly she does not understand RLS and neither did she understand my situation. I actually have calibrated my own meds and come up with what is working for me right now. I take the Gabapentin for the PAIN in my legs and feet and am continuing with the Pramipexole at half the dosage for the fidgety leg movements described above. I actually needed both meds but had to figure that out myself as well as the dosage.
Hi, I used this DA agonist after I was diagnosed with Parkinson’s. The dosages kept climbing, and I was getting no relief or better yet healing from this thing. So, I started a withdrawal procedure on my own to get it down to .25mg. Per day. When I ever I tried to go to zero, rls would Invariably occur preventing sleep at any time. No amount of 4 AM bike riding would stop it. I thought it was a withdrawal symptom. To make a long story short, the pramipexole left permanently, but the RLS stayed thankuverymuch. I’ll never know if I would have gotten RLS anyway, but I never want that crap in my sight again.
Thank goodness for that. See above .. The NICE Guidelines (EUROPEAN) for the drug were last updated in 2016.. This drug has been on the market in the UK since 1998. I have been on it since that time. The nature of augmentation has changed in the last 3-4 years especially the last 18 months to create a nightmare. No one listens to me .. they think I am exaggerating because I don't fit the guidelines .. or I get told I am making it up.
22 years on Pramipexole is NOT the same as 14-15 years on it. .... Physiologically or psychologically in my experience. I can only imagine how many with Parkinson's are in similar trouble.
Could I endorse all the others who suggest withdrawing really really slowly. If necessary towards the end you might need to crush the tablets to enable a micro dosage. This seems to make a real difference to severity of the withdrawal symptoms. Also, if you could persuade your GP or neurologist to prescribe an opioid such as tramadol, codeine or OxyContin on a temporary basi this would help when the symptoms are at their worst. Ultimately, hopefully, you won’t need an opioid once the alpha 2 delta ligand starts to become effective.
Thank you every one here for your support. I am sure you will understand how much that means to me. Just quoting from the Consultant's letter he says "I don't think changing her medication will make the slightest difference until the clear exhaustion and sleep deprivation are resolved." Has he never heard of chicken and egg??!!
Did he ever think that resolving this medication problem might just be what will help me most to be able to look after my husband? I have now put this so him as well as the information provided above and my thoughts on his inability to diagnose augmentation in a class of drugs he must use regularly with patients.
I was staggered to read this on "Neurology Live" with Mark Buchfuhrer
"The key problem that we’re seeing now with the treatment of RLS is a condition called augmentation. What that is, is you treat with a dopamine agonist—especially a short-acting dopamine agonist, like Mirapex and Requip—and initially probably over 90% of patients respond to these drugs, which is why they got such quick acceptance and usage because they work really well, but 7% to 8% of patients per year that you put on these medications will start to get a worsening of RLS called augmentation. By 10 years, 70% to 80% or more of your patients will be in augmentation. I can’t say 100%, but probably, if you follow these patients for 10 or 15 years or more, you’ll probably see 90% of the patients develop a worsening of RLS requiring more and more medication which then makes the condition even worse."
Very well done. Good find, this text of MB, very useful. I am in awe that you are able to absorb and process all this info and even react in a civilised way to your doctor, given your apparent state of exhaustion. You must be strong. Well done 👏🏻.
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