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Medication Side Effect Statistics

Posted: Mon Mar 05, 2018 5:51 pm
by Rustsmith
While doing a bit of digging the other day, I came across a couple of interesting statistics. According to CNN, a Blue Cross study in 2016 found that opioid addiction in their members "soared" to a rate of 8.3 per 1000, which is 0.83%. Another study by the National Institute of Health published in 2016 found that the rate of augmentation due to dopamine agonists occurred at a rate of 5 to 6 per 100 each year on the DA, or a rate of around 5% per year.

Yet another interesting study by Johns Hopkins looked at Impulse Control Disorder in Parkinson's patients and found that 9% of them experienced this side effect. ICD can result in compulsive gambling, eating, shopping, hypersexuality, etc. Granted that they take higher doses of DAs than are used for RLS, but ICD is still a potential side effect for RLS as evidenced by the number who report serious weight gains.

So, which is worse? Addiction to opioids at 0.8% or the damage that many of us have experienced from augmentation at a rate that is almost 10 times higher? Both are life altering and both involve issues with dopamine issues. And why weren't any of us warned about the potential for ICD when placed on dopamine meds if about 1 in 10 will experience this very real side effect that can destroy lives?

Re: Medication Side Effect Statistics

Posted: Mon Mar 05, 2018 8:00 pm
by badnights
That's what bothers me .... doctors and pharmacists don't even warn us about the potential for constipation with opioids, for goodness' sake! let alone suicide with gabapentin or ICD with dopamine agonists. And forget about augmentation - they don't even know what WED/RLS is let alone that a medication can augment it.

Maybe the doctor figures the pharmacist will, and the pharmacist figures the doctor has. More than likely, they both figure everyone will run scared and not take any medication if they hear about the potential side effects. A lot of people think that everyone will get the listed side effects.

Re: Medication Side Effect Statistics

Posted: Tue Mar 06, 2018 11:05 am
by Polar Bear
The figures from these statistics speak for themselves when it comes to the prescribing of medications. Come on - .83% opiod addiction in my mind is minimal compared to the 5% augmentation rate.

With regard to the John Hopkins study on Impulse Control Disorder 9% in Parkinson's patients. I take the old recommended daily dose of 4mg Requip plus opiods from the lower end and have absolutely no doubt that my 28lbs weight gain over the years is the result of the Requip. Include into the mix the two years when I had to take high dose steroid and it's easy to see how I would have eaten the leg of the table if possible !!

As Steve says, life altering,
I now get breathless (weight) osteoarthritis in hips is more painful (weight), and of course excess weight brings with it the lack of confidence as self image is shattered. Golf is no longer possible. I choose where I would go walking so as not too much in the way of steep hills.

There is also the cost of medication - taking further medications to deal with the side effects of the first medication, and so it goes on.
I often wonder if, all those years ago, I'd taken cocodamol as my first medication to deal with RLS, would that have been the answer. (constipation has never been an issue for me)
Yes, I know it's a big step to go straight to an opioid, even lower end, but I know that it works for me now. How much more effective might it have been if a DA was not in the mix.

Side effects are a worry but if RLS symptoms are prevalent possibly 24/7 and perhaps employment is a problem because of symptoms, or lack of sleep, I found that consideration of side effects was, at that moment, not a priority.

And as Beth says.... finding knowledgable medical support is so difficult.
It is another burden for the RLS sufferer.

Life altering - Absolutely, and then some.

Re: Medication Side Effect Statistics

Posted: Tue Mar 06, 2018 7:42 pm
by debbluebird
When we go to the pharmacy, they don't just hand over the meds. We have to go to a side window and wait for a pharmacist. You would think that this is when they would tell me about the medication, but no, they just say do you gave any questions. We have to go through every time, even when we have been taking the drug for a long time.
I had side affects from my DA, 100 pound weight gain, not bring able to have an organism, and hypersexuality. I struggled for over 10 years until I stopped taking the med and figured it all out.
Now, at least I have lost more than half of the 100 pounds and my personal life has gotten back to normal. There was damage on my heart and joints, resulting in joint replacements and kidney issues from high blood pressure. I take more meds than I would like, and have a different doctor for every issue.
My sleep is still a mess, and I find it hard to function.

Re: Medication Side Effect Statistics

Posted: Tue Mar 06, 2018 7:46 pm
by ViewsAskew
Maddening. Truly maddening.

Re: Medication Side Effect Statistics

Posted: Wed Mar 07, 2018 1:50 am
by 2BassetMom
The doctor I traveled over 1000 miles to see prescribed a DA, Requip, that isn't working and may be augmenting. He did want me to see if taking my oxycodone differently would help at night. I pill at dinner and 1 at bedtime. But that has to be prescribed by my pain management doctor up here in Idaho. She is just now coming on board with the whole idea of maybe this would be a good thing. Meanwhile, I'm still not getting the sleep I need at night and even day time naps are interrupted by restless legs. Yesterday my nap was halted by restless hands! This truly is the most frustrating syndrome I have ever experienced including shingles in my ear and thyroid cancer. I do wish doctors would listen to us as intelligent informed individuals.

Re: Medication Side Effect Statistics

Posted: Thu Mar 08, 2018 8:29 am
by ViewsAskew
2BassetMom wrote: This truly is the most frustrating syndrome I have ever experienced including shingles in my ear and thyroid cancer. I do wish doctors would listen to us as intelligent informed individuals.

So sorry you are still suffering so. And, what a testament to how difficult this disease can be!

I also wish, with all my heart, that doctors would be open to listening to those of us who have researched and learned a bit about it. A few do, but many more do not.

Re: Medication Side Effect Statistics

Posted: Mon Mar 12, 2018 4:28 am
by sleepdancer2
I've always been fearful of strong meds so have tried to avoid opioids. Shoot, I took one dose of a muscle relaxer and the feeling it gave me scared me so I didn't take any more. However, the hellish years I spent augmenting on dopamine meds with none of my doctors figuring it out, and the torture of going off them due to augmentation caused me to be open to stronger meds. I wouldn't want anyone to suffer like I did if there's a better way to get past the worst of it. Right now a family member is recovering from a near-death auto accident, his body pieced backed together with pins, rods, plates and screws. He says while he has experienced discomfort, he has not felt pain. We are grateful for doctors whose philosphy is to not allow a patient to suffer when there are options available. The risk of addiction seems not so weighty when agony is the other option. If I had a real concern, it would be the fear that many of these meds can suppress respiratory drive and cause central sleep apnea in some people. Add to that the fact that so many people have untreated obstructive sleep apnea, and I fear it is a recipe for trouble. To stop breathing while the brain is sedated and not able to recognize the need to take a breath is scary. Not that I would suggest not taking these meds, but rather that screening for CSA or comorbid conditions should be standard procedure.

Re: Medication Side Effect Statistics

Posted: Thu Mar 15, 2018 1:39 pm
by veldon75
I live in SC and we have an opioid crisis here so it's getting hard to get Drs. to prescribe Opioids Ive been on Mirapex 12 to 15 years I desperately want to get off is it possible to get off with only gabapentin or Lyrica and Tramadol these Drs are real idiots I've been to several Neurologists and pain Drs all I can get is Tramadol Gabapentin or Lyrica which ones better I tried Gabapentin before

Re: Medication Side Effect Statistics

Posted: Thu Mar 15, 2018 1:42 pm
by veldon75
I told the last pain Dr about the augmentation and spreading to my arms he said RLS can't spread to your arms he said that sounds like ticks from medication they don't have a clue!!

Re: Medication Side Effect Statistics

Posted: Sat Mar 17, 2018 6:19 pm
by Polar Bear
Aaaggghhh !! A doctor who won't accept that RLS can and does occur in the arms. A Pain Doctor no less. A tick is a tick, a sensation is so different. It's like he's trying to say that apples taste like oranges.

Re: Medication Side Effect Statistics

Posted: Fri Mar 23, 2018 5:23 am
by badnights
veldon, you're still in the same situation as you were? I thought you had almost withdrawn from the Mirapex at some point.
is it possible to get off with only gabapentin or Lyrica and Tramadol
yes of course. It's possible to get off with nothing.

There is no easy way to stop, even with opioids. It's brutally sad, but it's true. If you're going to stop, you have to suffer, it won't be easy but IT WILL BE BETTER after. Get as much tramadol as possible, and Horizant if possible cuz it's more effective than gabapentin but either gabapentin or Lyrica (some people respond better to one than the other) and then just do it.