Pramipexole and serious side effects

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Pramipexole and serious side effects

Postby jakesmom » Sun May 05, 2013 12:21 pm

I have made numerous posts regarding my desire and need to get off pramipexole for health reasons. I have been on it for 13 years straight. My dose started at .125mg at night. It is now 1.5 mg mid morning and 1.5 mg at night. The new reccommended maximum dose for WED patients is .25 mg per day. My neuro feels my dose is small and I have plenty of room for increases.

I have numerous side effects to this medication including cardiac issues, compulsive eating and spending, 100 pounds gained, pitting edema, and memory loss.

There are some amazing people on these boards and I am asking for your help.
I would like to compile a list of serious complications other people have had while taking pramipexole and at what dose, so that I can show my cardiologist I am not the only one having problems with this medication.

I know there are numerous posts spread out on numerous topics regarding pramipexole. My hope here is to have a current and concise list with symptoms and doses that will support my complaints.

I am not against Mirapex; it has been a miracle drug for me for many years. However doctors need to know how to dose it for WED and when to discontinue it when the dose becomes excessive.

Any assistance you can give me would be greatly appreciated and all stories are welcome. Perhaps this can be used by others in the future when faced with the same dilemma.

Thank you all!!!!!!!!!
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Re: Pramipexole and serious side effects

Postby debbluebird » Sun May 05, 2013 12:38 pm

You've listed most already. I've had weight gain (60 - 100, I go up and down), memory loss (lost job), being over emotional, compulsive behavior and swelling.
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Re: Pramipexole and serious side effects

Postby EeFall » Sun May 05, 2013 1:01 pm

Seriously, I think you are foolish (perhaps too strong of a word) to continue with your present doctor. He/she is a moron (not too strong of a word). You shouldn't have to school them, they should already be schooled and it sounds like they are thick headed besides, it is not difficult for doctors to keep abreast of the current state of RLS, they just have to want to do it. Obviously your doctor is not keeping up with current research! Find another doctor. The dose you are being given is dangerous, don't take it.

The other thing is, what about you? You don't have to take that huge dose! You have the perfect opportunity to stash hoards of pramipexole! Ween yourself of the high dose slowly and go down to .25 mg (or the smallest dose that works for you). Save the other pills for a time when you might need them. The world is already having terrible problems like natural disasters, governments being overthrown, who knows what can happen to upset the flow of medicines that we need! This way you just take what you need, save the rest, and you lie to your doctor about how much you are taking (you will probably never have to actually lie). I wish I had your problem.

In a way already do. My bottle says to take from .25 to .75 a day. I take .25 a day and stash the other meds. I have 3 bottles of stash of pramipexole. If something happens (even unemployment and no insurance or money) and I am not able to get the meds, I still have several months supply. Your doctor doesn't need to know that you are taking less.

:mrgreen: Yeah, I am giving radical counterintuitive advice. Some people always stop at the stop sign no matter what. If you are out and about at 4am in the morning and you come up to a stop sign do you always stop? Rules are made as though they are set in concrete, but actually they are not for all situations, you are your own person, don't always obey. :mrgreen:
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Re: Pramipexole and serious side effects

Postby jakesmom » Sun May 05, 2013 1:18 pm

I have been looking for a different doctor for a long time. In small town America, doctors don't like to cross other doctors. I don't have the luxury of access to doctors that give opiates or know what rebound and augmentation are, or believe I will have increased pain when I get off pramipexole.

I often take .75 in the morning if I am not hurting too badly. I am clinging to my job it's bad enough my memory is failing, I don't have the luxury of going in late when I haven't slept. I don't have a job where I can work from home and I am happy for those who can. If i fall asleep at work , I will lose my job. We are going through some major software changes at work. I can't miss or I will be left behind. I can't lose this job; I need health coverage.

Getting off this much pramipexole will require help. Help that I am trying very hard to get.
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Re: Pramipexole and serious side effects

Postby ViewsAskew » Sun May 05, 2013 6:31 pm

My list is more bizarre and annoying than life threatening, except the depression.

Depression
Constant desire to eat
Emotional impact (crying for no reason, mood swings)
Inability to orgasm
Songs (something two or three at the same time) playing non-stop in my brain
Brain scattered on many things at same time and unable to focus (I have to talk out loud over the myriad thoughts going on simultaneously)
Extreme stuffy nose (wake up unable to breathe at times)
Swollen ankles
Disturbed dreams/sleep
After a few hours of sleep, start wakening every few minutes - sometimes as little as 3 minutes to a max of 25 minutes
Body temp issues - wake up hot, can't sleep again until cold
Ann - Take what you need, leave the rest

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Re: Pramipexole and serious side effects

Postby jakesmom » Sun May 05, 2013 6:52 pm

Thank you !!!!!

Perhaps the support of 2 doctors and as many people who reply to this post will assist me in proving my point.
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Re: Pramipexole and serious side effects

Postby debbluebird » Sun May 05, 2013 7:38 pm

Ann I forgot some of them. Plus some of your I have and didn't know it was the Pramipexole. The hot and cold issue, the stuffy nose, no orgasms, and depresssion.
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Re: Pramipexole and serious side effects

Postby jakesmom » Sun May 05, 2013 8:05 pm

According to WEb MD, the following are the known side effects.


The following side effects are associated with pramipexole Oral:
Common side effects of pramipexole Oral:
Extrapyramidal Reaction Severe
Blood Pressure Drop Upon Standing Severe
Drowsiness Severe
Hallucination Severe
Voluntary Movement Difficulty Severe
Feel Like Throwing Up Severe

Abnormal Dreams Less Severe
Dry Mouth Less Severe
Incomplete or Infrequent Bowel Movements Less Severe
Low Energy Less Severe
Abnormal Manner of Walking Less Severe

Infrequent side effects of pramipexole Oral:

Myoclonus Severe
Disturbance in the Ability of the Eye to Focus Severe
Double Vision Severe
Problems with Eyesight Severe
Pneumonia Severe
Joint Pain Severe
Muscle Weakness Severe
Muscle Pain Severe
Loss of Memory Severe
Dizzy Severe
Chronic Trouble Sleeping Severe
Fever Severe
A Feeling of Restlessness with Inability to Sit Still Severe
Visible Water Retention Severe
Fluid Retention in the Legs, Feet, Arms or Hands Severe
Chest Pain Severe
Difficulty Swallowing Severe
Frequent Urination Severe
Feeling Weak Severe
Confused Severe
Paranoia Severe

Muscle Problems that cause Abnormal Movement Less Severe
High Blood Pressure Less Severe
Inflammation of the Nose Less Severe
Inability to have an Erection Less Severe
Inflammation of the Sac Surrounding the Joint - Bursitis Less Severe
Muscle Spasm Less Severe
Abnormal Increase in Muscle Tone Less Severe
Sensation of Spinning or Whirling Less Severe
Numbness Less Severe
Rash Less Severe
Loss of Appetite Less Severe
Weight Loss Less Severe
Head Pain Less Severe
Not Feeling Well Less Severe
Altered Interest in Having Sexual Intercourse Less Severe

Rare side effects of pramipexole Oral:

Sudden Onset of Sleep Severe
Urinary Tract Infection Severe
Serious Muscle Damage that may Lead to Kidney Failure Severe
Trouble Breathing Severe
Problems with Bladder Control Severe
Syndrome of Inappropriate Antidiuretic Hormone Secretion Severe
Delusions Severe
Habit and Impulse Problem Less Severe
Excessive Sweating Less Severe

This list is amazing. Although I disagree with habit and impulse problems being less severe and rare, it nonetheless is astounding.
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Re: Pramipexole and serious side effects

Postby jakesmom » Sun May 05, 2013 8:14 pm

These are according to the Mayo Clinic


Side Effects

Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur:

More common
Dizziness, lightheadedness, or fainting, especially when standing up
Drowsiness
Hallucinations (seeing, hearing, or feeling things that are not there)
Nausea
Trouble with sleeping
Twitching, twisting, or other unusual body movements
Unusual tiredness or weakness

Less common
Confusion
Cough
Difficulty with swallowing
Double vision or other changes in vision
Falling asleep without warning
Fearfulness, suspiciousness, or other mental changes
Fever
Frequent urination
Memory loss
Muscle or joint pain
Muscle weakness
Restlessness or need to keep moving
Shortness of breath
Swelling of the body
Tightness in the chest
Troubled breathing
Wheezing
Writhing, twisting, or other unusual body movements

Rare
Abnormal thinking
Anxiety
Bloody or cloudy urine
Chest pain
Difficult, burning, or painful urination
Dizziness
Frequent urge to urinate
Loss of bladder control
Mood or mental changes
Swelling of the arms or legs
Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:

More common
Constipation
Dryness of the mouth
Headache
Heartburn, indigestion, or acid stomach
Less common
Abnormal dreams
Decreased sexual drive or ability
General feeling of discomfort or illness
Increased cough
Increased sweating
Itching
Joint pain
Loss of appetite
Runny nose
Skin problems, such as rash or itching
Weight loss
Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.

Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.
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Re: Pramipexole and serious side effects

Postby debbluebird » Mon May 06, 2013 12:35 am

I thought my low energy was due to lack of sleep. I just have no energy to do anything. It's all I can do to walk across a room, much less go further than that. Also my nose runs a lot. I thought maybe that was because of my CPAP which goes into my nose.
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Re: Pramipexole and serious side effects

Postby jakesmom » Mon May 06, 2013 1:03 am

The variety of side effects is astounding. I'm sure many of us are looking at those lists and thinking the same thing.

Personally, I didn't know itching was a side effect. I just thought it was anxiety.
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Re: Pramipexole and serious side effects

Postby ViewsAskew » Mon May 06, 2013 2:52 am

So many of these things happen anyway (and without meds, let alone with different ones). it's really hard to know unless you go off it, then start it again. And, harder when you take many things in combo. I've been off of it for as long as 3 years and have been on and off enough times that I'm darn sure what is pramipexole and what isn't. When I took it every other day, I'd be astonished at how quickly I'd go from feeling OK to wanting to jump off a cliff....but with no drive to go find a cliff. Guess that was the good part.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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Re: Pramipexole and serious side effects

Postby badnights » Mon May 06, 2013 7:09 am

jakesmom, I'm not sure if it's a good idea to go in with a list of all the confirmed and unconfirmed side effects you can find. I don't think this will impress your cardiologist. He can look that stuff up himself. If you feel strongly about it, you can mention one or two side effects people have listed here that aren't on the official lists, just to emphasize that these things do happen, but I am sure your cardiologist is already aware of that too.

You have your list of symptoms,
your link with pramipexole dose,
and your references to cardiac issues arising from pramipexole use.
I think that's all you need to focus on.
Beth
AUGMENTATION http://www.willis-ekbom.org/document.doc?id=2324
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board moderator's posts do not represent the opinion of the WED Foundation & are not medical advice.
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Re: Pramipexole and serious side effects

Postby jakesmom » Mon May 06, 2013 8:28 am

I was talking about that with my mom last night, she sees him also. What I plan to do is just discuss the drug with him and my ever increasing dose. Maybe it will save me from having more horribly expensive tests that come back normal. I just want him to understand there is a possible explanation for the problems I have been having. I will get his opinions and take that info with me to my new GP appt on the 20th.

I emailed the office of a new neuro to see if anyone in their practice is familiar with augmentation and how to treat it. So, not only is the search on for a GP it's also on for a new neuro. This is a full time job.
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Re: Pramipexole and serious side effects

Postby ViewsAskew » Mon May 06, 2013 8:32 am

jakesmom wrote:I was talking about that with my mom last night, she sees him also. What I plan to do is just discuss the drug with him and my ever increasing dose. Maybe it will save me from having more horribly expensive tests that come back normal. I just want him to understand there is a possible explanation for the problems I have been having. I will get his opinions and take that info with me to my new GP appt on the 20th.

I emailed the office of a new neuro to see if anyone in their practice is familiar with augmentation and how to treat it. So, not only is the search on for a GP it's also on for a new neuro. This is a full time job.


It really is a LOT of work, isn't it! That's why I periodically give up!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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