@Manerva im still waiting for a neurologist and my doc it has advised cold turkey in the pramiprexole.
Should I be looking to get off them and into Gabapentin or maybe tramadol? My doctor wouldnt discuss either yet 
Also I've found some relief with tens on the revitive ix I purchased. For now at least 
I'd love yo know you're ideas and thoughts? Or anyone else of course
Sorry I wrote quite a bit then lost it!!!!
For now, I'll say do NOT stop the pramipexole cold turkey.
Do NOT stop it until you have started on an alternative.
I will write more later.
I’m back
My first response to your post was that your doctor is profoundly ignorant. At least as regards RLS.
Secondly your doctor, in my opinion appears to be dangerously incompetent in relation to the advice about stopping pramipexole cold turkey. This is a SERIOUS matter.
Thirdly, as regards refusing to discuss alternative sto pramipexole he/she may be considered to be failing to comply with the law of informed consent.
It is up to you, but I would press you to make the doctor aware of their ignorance. At the least I suggest you make a written complaint to the GP surgery.
You might also contact the General Medical Council, (GMC). To see if they would consider investigating this doctors conduct.
You could wait until you see the neurologist and carry on taking the pramipexole.
Or, hopefully you are registered with a GP practice with several doctors and could ask to see a different doctor. I have been told by several doctors and health service managers that you are entitled to this.
I will give you some links to some sources of authoritative information that clearly demonstrate this doctors ignorance and possible negligence.
Stopping pramipexole, even slowly, can cause withdrawal effects. Stopping it suddenly significantly increases these withdrawal effects. Additionally, some people suffer from DAWS (Dopamine Agonist Withdrawal Syndrome) which can cause severe mental health problems and in the worst case scenario, some people suffer Neuroleptic Malignant Syndrome, which can be life threatening.
Sudden cessation
This is a link to the British National Formulary (BNF) prescribing instructions for pramipexole.
bnf.nice.org.uk/drug/pramip...
Note the section headed, “Treatment Cessation” which states
“Antiparkinsonian drug therapy should never be stopped abruptly as this carries a small risk of neuroleptic malignant syndrome.”
Heres a link to a patient information leaflet
dropbox.com/s/bt2zh7c0nvdcg...
Note the section at the bottom right hand column on the first page headed “ If you stop taking Pramipexole”
Which states
“Do not stop taking Pramipexole without first talking to your doctor. If you have to stop taking this medicine, your doctor will reduce the dose gradually. This reduces the risk of worsening symptoms.”
This is a link to an article on DAWS
ncbi.nlm.nih.gov/pubmed/236...
I have read a research study which clearly demonstrated that slow reduction of a dopamine agonist does reduce withdrawal symptoms.Sorry I can’t find it now.
Alternative RLS medicines
Alpha 2 delta ligands, gabapentin or pregabalin are now not only accepted alternatives to dopamine agonists but are recommended as the FIRST medicine to be tried.
Here’s a link to he UK national guidelines on the management of RLS
cks.nice.org.uk/restless-le...
Note the section headed “First-line recommended drug options - - - “
Which identifies an option being
“An alpha-2-delta ligand (pregabalin or gabapentin”
Heres a link to the internationally accepted guidelines on the treatment of RLS. This only gives the abstract. I have the full article however, The reference is sufficient.
ncbi.nlm.nih.gov/pubmed/274...
Note : the abstract states “medications such as α2δ ligands may be considered for initial RLS/WED treatment; these drugs are effective and have little risk of augmentation.”
Switching from DA to α2δ
It is recommended that an effective dose of the ligand should be established BEFORE reducing the dopamine agonist. The ligands take about 4 weeks to become effective.
Here's a link to an article written by a RLS specialist/Professor of Neurology : Mayo clinic USA.
uptodate.com/contents/treat...
Note : the section headed “Alpha-2-delta calcium channel ligands”
Which outlines the possible doses and schedules for the ligands
Note : also the section headed “Augmentation : Managment”
Which states
“Alternatively, dopamine agonists can be discontinued and replaced with alpha-2-delta calcium channel ligands We typically introduce the new drug and increase the dose to an effective level before slowly reducing the dopamine agonist and discontinuing if at all possible.”
Although you may decide to wait til you see the neurologist, see another doctor or do nothing, I think the fact that doctor is prepared to tell you to stop taking a drug without any consideration of the consequences is dangerously ignorant and possibly negligent. and this doctor needs to be at least made aware of this.
If you complain to the GP surgery and they fail to act on this, then you can complain to NHS England. You can contact the GMC.
Thanks manerva I don't know what to say! I'm not the kind to complain for fear of what they will do and he was trying to be helpful :(. Thank you for your advice, now I'm worried that absolutely no one at my surgery has a clue!! Last night was restless legs all the way except for an hour after the tens. I did note that my sleep albeit interrupted as hell was sleep. So pramiprexole is definitely my insomnia causer. As I didn't have any last night should I just taper off gradually.
I agree with Manera do NOT go cold turkey, you need to wean down off it slowly. and that means having a med to help with the withdrawals like Gabapentin and tramadol. Both of those help with the withdrawals. So have you tried ALL the doctor's in your surgery about you getting off the prami..? The doctor you have seen hasnt a clue . So sorry you are not getting the treatment you need.
Seen 4 different doctors none seem to care or have a clue
Not having a clue doesnt really make a bad doctor, not listening, being dismissive and not being willing to discuss or learn makes a terrible doctor.
If you've been on pramipexole for a while, you may still need to wean off it slowly.
There is evidence, sorry I've lost the reference to the study, which in effect showed that the lower the dose of a DA is the harder it is to lower it further.
In this study, if I recall correctly it took a group of people taking ropinirole a lot longer to reduce from 1mg to nothing than it did to reduce from 4mg to 1mg.
I can understand your doctor, (wrongly) thinking that such a low dose can be stopped cold turkey without any risk. This is possibly their ignorance.
I suggest the following
Reduce from 88ug (0.088mg) to 44ug, by cutting tabs in half. If symptoms become unbearable go back up to 66ug - cut tablet in quarters and take 3 quarters.
Stay on 44ug (or 66) for at least 2 weeks then make a further reduction of 22ug (a quarter tab) i.e. to either 22 or 44ug Stay on that for 2 weeks then cut to nothing or 22ug.
You may find co-codamol helps with wihdrawal effects, these will be at their worst 24 - 48 hours after the last dose. Of course since you wont have any replacement medication, your symptoms may remain worse indefinitely.
I note recently a member posting that they normally took 44ug but occasionally took an extra 44ug and suffered significant withdrawal effects for nearly two months. I seem to recall they decided to start taking it again. They also hadn't replaced it with anything else.
That of course is a worst case scenario, it may be that you could just stop cold turkey and take the risk.
In 2012 I was referred to A&E by my GP. In A&E a doctor insisted in wanting to carry out a procedure on me which I was hesitant about. She didn't consult anyone more senior and on questionning her, it was apparent that she had no experience of anybody in my particular situation and athough she claimed to have carried out the procedure before twice, it didn't seem to be on someone in my situation.
Luckily, I understood that what she was wanting to do was very dangerous and possibly fatal. I refused. Interestingly, I was subsequently admitted to hospital and was seen by a senior surgeon and his team, which included this same doctor. The senior surgeon emphatically stated that if it became necessary to carry out the same procedure NONE of his team were to attempt it, he would need to do it personally.
It was fortunate that I knew that the procedure was dangerous and refused it, but I did think what would have happened if I hadn't known. I also realised that it's not the sort of thing most people would know.
I did submit a complaint about this incident. My complaint was upheld. The hospital reprimanded this doctor and she was given remedial training and closer supervision by a more senior doctor.
Otherwise, how many people could she have harmed? How many people has my complaint protected.
Forgive me for pressuring you on this, no criticism of you, I'm not aware of your situation.
best wishes
Do I still need to taper if only been taking two. 088/0.125 prami? Maybe that's why he's been a bit more aggressive with his approach ?
Sorry to say that you owe it to other people to take this doctor to task. That's up to you however.
I'm afraid I hear too often, either in the media, or locally through my own contacts about health professionals getting away with bad practice, negligence or simply unacceptable attitudes. They carry on getting away with it until something major happens
In your situation, I would have no hesitation in complaining, have done and received positive responses.
If you see another doctor you can print out and take the information I've signposted and they should discuss it with you. In which case you can make a simple request to be prescribed gabapentin or pregabalin. They have no real excuse for not doing this. It is commonly prescribed, it is officially recommended.
The information I've given you from NICE (National Institute for Health and Care Excellence) Guidelines and BNF are official and doctors ignore them at their peril.
If they refuse to discuss it with you, then they are acting unethically, if not illegally and a good doctor will at least listen and discuss things wih you as an equal.
If they make any threats about non-compliance then you have yet another cause for complaint. This has recenlty happened to another forum member.
You can't expect GPs to be knowledgeable about everything, but you wouldn't expect them to refuse to respond to very reasonable requests, to treat you with respect, to listen to you, and not be so arrogant and (actually idiotic enough) as to ignore official guidelines.
I wouldn't imagine that all the doctors in your surgery are like this.
I appreciate it is often difficult to be assertive with health service providers, such as GP surgeries and really you shouldn't have to be.
You may find this link helpful - excuse my eartlier inaccuracy, the General Medical Council is the national registration body for doctors. Doctors proven to act negligently can be removed from their register. Doctors removed from the register will be sacked.
You can at least contact the GMC about whether they would investigate this doctor.
gmc-uk.org/concerns/raise-a...
The GMC can act if a doctor has shown -
"failure to respond reasonably to a patient’s needs, including referring for further investigations where necessary"
BOTH stopping prami suddenly AND refusing an alternative seem to fit this.
Note doctors can also be investigated for "bringing the profession into disrepute".
You can of course decide to slowly reduce the pramipexole if you wish.
Since you have nothing to replace it, this is not such a good idea.
Even if you stop it and then gabapentin is prescribed, it will be weeks for it to begin to take effect, even if the prescribing doctor gets the dose right. There is no need for you to suffer more than you need to if you start the gabapentin BEFORE reducing the pramipexole.
It depends on when you think you'll get to see the neurologist but depending on what dose of prami you're taking, to reduce it slowly may take months.
More information on this if and when you need it.
Thank you again manerva I have a lot to think about.
So maybe it's worth speaking to yet another doctor and convincing them to add the gabapentin while reducing prami? And if they refuse getting their reasons in writing?
I dont think it should be necessary to get their reasons for refusing in writing, verbal should do. It depends on what reasons they give.
They can of course simply refuse on the grounds that in their professional opinion you either won't benefit OR may come to harm, but you'd still have the right to be told what those grounds are. Doctors have to be able to justify their decisions, they aren't above scrutiny.
I'm sure good doctors, who are the majority, are aware of this.
You may have come across an exception.
If you've been diagnosed with RLS they have no excuse for refusing on the grounds that gabapentin won't benefit you. You have the evidence I've given you.
If they refuse on the grounds that it might do you harm then their reasons should include information about "Contraindications" or "Cautions"
A contraindication is where the drug either interacts with another medication you're taking that might be potentially harmful OR that you have some other medical condition for which gabapentin may be harmful.
A caution is usually where you have some other medical condition that means they have to be careful but it doesn't entirely exclude using it.
Contraindications,
Gabapentin is known NOT to interact to any great degree with many other medicines. It doesn't interact significantly with pramipexiole.
The medicines that interact with gabapentin are ones that mainly have the same side effects and these can then add up : usually drowsiness. Even then, it doesn't mean you can't take gabapentin.
I'd say unless you drive long distances, drink alcohol heavily and smoke cannabis, you should be alright.
I'm OK, I've given up all those.
Cautions ;
Diabetes mellitus; elderly (in adults); high doses of oral solution in adolescents and adults with low body-weight; history of psychotic illness; history of substance abuse; mixed seizures (including absences)
You can see a complete list on the gabapentin bnf web page.
If they cant show how these contraindications or cautions apply to you, then really they have no real grounds for refusing.
Finally, they could simply say they're refusing because they don't want to take the responsibility, but why would they do that, given the evidence I've given you?
Negligence isn't just about doing something that causes harm, it's also about failing to do something that causes harm. In this case failing to give recommended treatment. and hence causing unnecessary suffering.
RLS
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