So I have been on Mirapex 2mg for 16 years and finding out all the side affects, most which I have, have decided I need to get off this drug. I'm just not sure how? And with what to help me get off. Then what do I take for my RL???? I have it in my legs, arms and soulders.
Quit Mirapex after 16 years....Cold t... - Restless Legs Syn...
Quit Mirapex after 16 years....Cold turkey or ween off....And then take what???
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carla6556
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If you ween off down to max 0,54 mg the side effects, most often, disappear. Many people has highen their dose instead of lowen it when the symptoms got worse.
I read somewhere that you must never just stop. Please seek advice before you do. I think you need to wean yourself off gradually. It will be hard, but can be done. I am on the lowest dose, and am trying not to increase it by having a few days off every now and again so my body doesn't get too used to it. Hope you get on ok.
in reply to Gmc54
Hi Gmc54, I am always mystified when memberd say they have a few days off mirapex now and again. Doed this not make your legs get horrendous withdrawals ?
Gmc54 in reply to
I do get quite bad rls while taking time off the tablets, but I only come off them when they seem to be less effective. I just don't want to go down the path of increasing from the lowest dose, and this seems the only way for me to do this. If I have a few days off the tablets the low dose seems to be effective again........until the next time.
in reply to Gmc54
Thankyou for reply Gmc54
Stopping suddenly may result in Neuroleptic Malignant Syndrome (NMS).
The following is taken from Wikipedia.
Neuroleptic malignant syndrome (NMS) is a life-threatening neurological disorder most often caused by an adverse reaction to neuroleptic or antipsychotic drugs. NMS typically consists of muscle rigidity, fever, autonomic instability, and cognitive changes such as delirium, and is associated with elevated plasma creatine phosphokinase.
The incidence of neuroleptic malignant syndrome has decreased since it was first described, due to changes in prescribing habits, but NMS is still a potential danger to patients being treated with antipsychotic medication. Because of the unpredictability of NMS, treatment may vary substantially but is generally based on supportive care and removal of the offending antipsychotic drug.
Signs and symptoms
The first symptoms of neuroleptic malignant syndrome are usually muscle cramps and tremors, fever, symptoms of autonomic nervous system instability such as unstable blood pressure, and alterations in mental status (agitation, delirium, or coma). Once symptoms appear, they may progress rapidly and reach peak intensity in as little as three days.
These symptoms can last anywhere from eight hours to forty days.
The muscular symptoms are most likely caused by blockade of the dopamine receptor D2, leading to abnormal function of the basal ganglia similar to that seen in Parkinson's disease.
A raised white blood cell count and creatine phosphokinase (CPK) plasma concentration will be reported due to increased muscular activity and rhabdomyolysis (destruction of muscle tissue) The patient may suffer hypertensive crisis and metabolic acidosis. A non-generalized slowing on an EEG is reported in around 50% of cases.
The fever is believed to be caused by hypothalamic dopamine receptor blockade. The peripheral problems (the white blood cell and CPK count) are caused by the antipsychotic drugs. They cause an increased calcium release from the sarcoplasmic reticulum of muscle cells which can result in rigidity and eventual cell breakdown. No major studies have reported an explanation for the abnormal EEG, but it is likely also attributable to dopamine blockage leading to changes in neuronal pathways.
Unfortunately, symptoms are sometimes misinterpreted by doctors as symptoms of mental illness, delaying treatment. NMS is less likely if a person has previously been stable for a period of time on antipsychotics, especially in situations where the dose has not been changed and there are no issues of noncompliance or consumption of psychoactive substances known to worsen psychosis.
Increased body temperature >38°C (>100.4°F), or
Confused or altered consciousness
Diaphoresis "sweat shock"
Rigid muscles
Autonomic imbalance
End of wikipedia quote.
The risks of developing a NMS response are not that great especially if you are on a low dose. However it would only be wise to stop with advice from an appropriately qualified medic.
I have had up close and personal experience with this with my nephew. It is the antipsychotic meds that can cause, not the dopamine meds. HE is schizophrenic, and got to the point of confusion that he did not know his parents, all because of the antipsychotic drug he was taking. Neuroleptic Malignant Syndrome is rare, and dopamine meds cannot cause it. My nephew was hours away from being comatose, it comes on that fast.
I don't know what to do any more. I'm tired frustrated and getting all this mixed up. Now to add to it all I'm having marriage problems. It's just too much to deal with.
I'm sorry...Thank you for your input. I think I'm just going to crawl under the covers and wait till everything goes away. My marriage just took me over the edge yesterday. Thank you
Hello nightdancer,
Regarding NMS and Dopamine drugs. The following is taken from the patient information leaflety for Pramipexole.
If you stop taking pramipexole
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.
If you suffer from Parkinson’s disease you
should not stop treatment with pramipexole
abruptly. A sudden stop could cause you to
develop a medical condition called neuroleptic malignant syndrome which may represent
a major health risk. The symptoms include:
- akinesia (loss of muscle movement),
- rigid muscles,
- fever,
- unstable blood pressure,
- tachycardia (increased heart rate),
- confusion,
- depressed level of consciousness (e.g. coma).
If you have any further questions on the use
of this medicine, ask your doctor or pharmacist.
End of Patient info leaflet quote.
Perhaps this info is not up to date. I have found dubious information in patient info leaflets before. Well one, and that was in the leaflet for Pramipexole too.
NMS can u get it if u r Continually taking like 2mg
. I know I need more.
I will further this conversation later unable to.zlddp last 2 day
Gene54. .. I'm sure everyone responds differently when they miss their dosage of mirapex. I take 2mg at one time around 8 in the evening. If I forget to take it and sometimes even when I do my arms ..I have to move and shake them. Even taking my dosage. .If I am tired like now. I can't hold my phone long. It makes it worse. Right now I am so tired. I sleep only about 3.to 4 hours a.night. many days I have to take an 3 xtra .50 mg just to make it thru the day. I get symptoms worse if I'm even later taking my usual 2 mg. I'm sure I have been in augmentation for several years.
in reply to carla6556
Carla go to the website rlshelp.org it is an excellent site.You can email Dr Mark Buchfuhrer and he will reply, Ask him if he can recommend a good rls specialist in your area.You neef to do this under medical supervision, It will be very difficult but if you can get a neurologist to work with uou and prescribe strong pain meds it can be done.Your augmentation is severe you have been on a large dose for a long time so acupuncture, diet etc will not work.You will discuss what treatment to use next with your neurologist. You are living a nightmare which will continue as long as you keep taking mirapex.The experts opinion is to stop all at once but ONLY under strict supervision and opiates.Some people have gone into detox to do it.Some cut down slowly and can manage with tramadol.Please get yourself a good doctor and start the process.Good luck
carla6556 in reply to
pippins...Thank you so much for all your help. Are you the one who takes more than 2mg of Mirapex? Don't you get the same side affects?
pippins..
I looked on the site and I don't see an email address specifically for Dr. Buchfuhrer.
in reply to carla6556
Carla its only in tiny writing towards the bottom of page above ehere it says expert consultations..No thankfully I never took such a large amount but I was on it for several years.i have been off it gor just over 2 weeks
in reply to carla6556
Just below the yellow highlighted bits there is a tiny box that says email
On the left side of the page, it says "email us" on a square" button. That is his email. It only goes to him.
So I got an email back from the RLS doctor. I didn't tell him any symptoms only a few ...can't think of the word...things u have like double vision.
He was very quick to reply saying he's not sure all my problems can be blamed on Mirapex but that his recommendation
For dosage was 0.25 mg and he doesn't know anyone in PA or Fl to help me but suggested a clinic in b Baltimore. No insurance there. He said to Definately ween down but with a doctor and opiods because it will be difficult.
I have talked with 3 doctors who just say.
Your kidding.
.When I mention opiods. So u guess I either cold turkey and get it over with and take my chances nothing bad happens. ..or stay on the amount plus. Doctors write for whatever I ask for. Amazing. I'm at a loss...no matter what.
So sorry Carla, that no doctor will help you. Taking opiates to get off the Pramipexole is the only way, doing it by yourself will not work, the withdrawals will be horrendous. But staying on the Pramipexole and having to keep adding to it will also not do your health any good. A doctor is willing to keep upping your dose, but not help with you getting off it..! They are putting your health more at risk, then by giving you opiates. If you can take Dr. B's email to a doctor and show them his advise, maybe a doctor will listen. I know some doctor's your side of the pond are afraid to give opiates because of the "addiction" problem... But you will not get addicted, you just need them at the correct dose prescribed by a doctor for short time while you get off the Pramipexole. Keep looking for a doctor who will listen to you, a doctor who understands augmentation and what that involves. When you phone one, ask if they know anything about RLS. cause at the moment the ones you have seen have no idea, or how serious this condition is or it seems the correct dosage to give you and what to do when you have reached the highest dose....upping it all the time, will only work for a while, then augmentation comes back with avengence.
carla6556 in reply to
Thank you Elisse. I have 2 more doctors that specialize in RLS. I go to my primary today. That is a good idea to print the letter and take ot. I'm not going to take it to my primary cause I need scripts written if I can't get off these. I'm so disgusted. I can't sleep at night. I did some Kast night though.
Thanks again for coming to my rescue.
in reply to carla6556
Before you see either of those two doctors, find out how much they know about RLS, because they say they specialise in RLS, doesnt always mean they know enough about it. I have seen that happen before on other forums, someone goes to see a doctor who is supposed to know all about RLS, and then find at the appointment, they know more than that doctor. You need to know if either of those doctors have the expertise of treating RLS patients with augmentation, you do that by phoning first. That way you save your time of booking the appointment and wasting your time seeing a doctor who cant help.
Hi Carla. I was also on Mirapex and having to take too much after hip-replacement surgery
( the RLS got much worse after the surgery), I went into horrible augmentation with the drug.
My doctor would not listen, refused to change medication, and I was getting worse by the hour. In desperation I wrote to the RLS specialist in California for help. His responds came very fast and with a copy of that, as well as bringing one of my daughters along for support, my doctor quickly wrote out a prescription for Ropinirole. The switch-over was immediate and without any major problem.---The augmentation in my case was so severe that switching to another medication ( Ropinirole) just gave me huge relief. Of course we are all different, and I do realize that I was probably very lucky to be able to switch over so quickly.
I hope you get help and relief very soon!!
carla6556 in reply to
Thank you Bambino for your help. How many mg? Is that the brand name or generic? I thought that was Nupro but it isnt.
So I go to new primary doc who says he knows about RLS bit in the same breath asks what Mirapex is for!!!!!! Someone give me a brake!! Then after is all said and done and I talk about my symptoms he gives me two papers to fill out on depression. I hit the high high on both papers. Comes back and says my inability to think reason and remember and crying jags are from depression. Ok I'll buy that but what caused the depression. Let's not bandaid it. So rx for cymbolta 60 mg 1 every other day for 1 week then every day. Any thoughts?? I didn't pick it up yet. Going to cost me $90.
OMG..!! Me is thinking you need to move to another state.!! Yes of course you are depressed, because you aint sleeping..!! Anti depressants can make RLS worse, altho not sure yours could get any worse right now..!! I will send in the info for anti-d's. You might be ok with that anti-d but then again you might not.... I despair for you and the doctors you get to see. 
carla6556 in reply to
I had my phone right there with all the drugs pulled up but I couldn't see any.comments on cymbolta.
This is from Dr.B's website....
Antidepressant Medication
This class of medications should be used with caution in RLS patients. Antidepressants can worsen RLS symptoms more often than help them. As depression is a common problem, especially in patients with severe and persistent RLS problems, antidepressants are often prescribed for RLS patients. RLS patients who are put on antidepressants and notice worsening of their symptoms should inform their physician of this problem immediately.
There are several different classes of antidepressant medication. If a medication in one class causes problems, then a medication from another class may be of more benefit. As with most RLS medications, much trial and error must take place to see if these medications are helping. Due to the long list of antidepressant medications, we will only list them in their appropriate categories.
There are no specific guidelines for using antidepressants in RLS, and generally they are used for RLS in the same doses as for depression. The oldest antidepressants, the tricyclics, tend to worsen RLS more than they help. The SSRI's will worsen RLS more often than helping but they seem better tolerated than the tricyclics. There is only one antidepressant drug, Wellbutrin, which has dopamine like effects, so it may benefit RLS. This however, has not been looked at systematically yet although there are some case reports of Wellbutrin helping RLS. Trazadone may not help RLS but it does not seem to worsen the condition.
Tricyclics & Combinations
Ascendin (Amoxepine)
Elavil (Amitriptyline)
Etrafon (Perphenazine and Amitriptyline)
Limbitrol (Chlordiazepoxide and Amitriptyline)
Norpramin (Desipramine)
Pamelor (Nortriptyline)
Sinequan (Doxepin)
Surmontil (Trimipramine)
Tofranil (Imipramine)
Triavil (Perphenazine and Amitriptyline)
Vivactil (Protriptyline)
MAO (Monoamine Oxidase) Inhibitors
Nardil (Pheneizine)
Parnate (Tranylcypromine)
Selective Serotonin Reuptake Inhibitors (SSRI's)
Paxil (Paroxetine)
Prozac (Fluoxetine)
Zoloft (Sertraline)
Celexa (Citalopram)
Lexapro (Escitalopram)
Serotonin and Norepinephrine Reuptake Inhibitors (SNRI's)
Effexor (Venlafaxine)
Cymbalta (Duloxetine)
Tetracyclics
Ludiomil (Maprotiline)
Miscellaneous Antidepressant Medications
Desyrel (Trazadone)
Wellbutrin/Zyban (Bupropion)
carla6556 in reply to
That is what I had pulled up around docs but it doesn't say anything about cymbolta.
Its cymbalta... 
Sixth up from the bottom of the list.
carla6556 in reply to
Right. My spelling is bad. I came home and took off my jeans and got in bed where I am now. I co u lo hardly think straight. Suppose to drive 4 hours to my daughters hit I could barely drive 40 min. To docs. Just not a good day. Maybe tomorrow.
Elisse thank you so much
carla6556 in reply to
I saw it bit is it bad to take or jo effect ? I didn't know
It CAN make RLS worse, BUT, Dr. B says, with anti-d's you may have to try any one to find out. You would usually know straight away if its sends your RLS nuts. BUT, taking an anti-d is not addressing your situation, which is getting off the Pramipexole. Get that sorted and you wouldnt need a anti-d. You would take a different RLS med so you can sleep. I hope you are able to rest and get some sleep. Read this later.
carla6556 in reply to
I'm laying in bed tossing. Going to call USF and ask specifically if they have prescribed opiods to any patients to help th get off mirapex. If they haven't. .I'm canceling. I'll let u know. Calling now
USF is calling me back
in reply to carla6556
Hi any phone call yet Carla? X
carla6556 in reply to
I'm sorry. Not a good past few days. Took all my mirapex and put a Nupro patch on last night. Got up 3 times but was able to go back to sleep.
The doc called and said on occasions they have per scribed opiods. But she would have to see and talk to me first which I said was very fair.
in reply to carla6556
That sounds more promising! At least not dismissing it out of hand and knows it is sometimes necessary . Obviously they have to knoe your situation and experience before can say for sure so as you say thats fair.Wishing you good luck for 24th..kim x
Ok, hang in there......
Hi Carla you are having a rotten time.Not sure how yhe health system works in USA so different from here.I noticed a couple of places were not covered by insurance and they sounded promising.Stupid doctor today giving you antidepressants.Hope the appt you have on 24th is going to work out for you. In some ways though you are in a better place than a week ago.You now have more understanding and knowledge and access to email Dr B.You need to learn as much as you can from a reliable source like Dr Bs site.You will then be in a better position when you do meet the right neurologist. Try and find a group perhaps close to whete you live, try to find anyone else who has same problem maybe someone local has experience of same thing.Yoi now also have this forum and many are very knowledgeable. Keep in touch , keep posting, keep learningAs Elisse says hang on you will get there.Maybe start a new post as replies can get lost on a long post.Take care ..kim x
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