Well, THAT was interesting!

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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mudslide
Posts: 37
Joined: Sun Jun 08, 2014 7:23 am

Well, THAT was interesting!

Postby mudslide » Tue Jun 10, 2014 8:42 pm

So I've been getting off Mirapex because of augmentation after a very good run of 10 years. My doc recently switched me to oxycodone. (The full story is in Just Joined? under the header Another New One.) It hasn't been a great 2.5 weeks, although not a screaming nightmare either. One odd thing I noticed was that on a couple of nights, I had no symptoms before bed, took the oxy, and the symptoms started up. Again last night, I had no symptoms (pretty unusual), and I decided to just go to bed without taking anything. I was tired, I had a headache, I felt a bit weird, I had periods of being too hot, then too cold, and I couldn't get to sleep -- but the RLS didn't start!! Finally around 2:30 I got some very mild symptoms in one wrist and took an oxy; fell asleep around 3:30. I'm amazed at the absence of symptoms. Am definitely going to try druglessness again tonight if there are no symptoms before bedtime.

QyX
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Location: Berlin / Germany

Re: Well, THAT was interesting!

Postby QyX » Tue Jun 10, 2014 9:22 pm

I am on opioids for 2 3/4 years now. I had episodes were I though all my symptoms are gone, especially in the past weeks and I was trying to stay away from meds complete. But it didn't work out. Over the months I noticed that I have weeks were I have less severe symptoms as normal. The symptoms can go up and down like my mood or energy. After all, I need meds every day but sometimes not during the day.

Amazing that you were able to stay on Mirapex for 10 years. 4 weeks is my personal maximum.

Maybe it is possible for you to restart the Mirapex in a few weeks?

Good Luck with the Oxycodone!

ViewsAskew
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Re: Well, THAT was interesting!

Postby ViewsAskew » Tue Jun 10, 2014 11:32 pm

When you've augmented, you have no idea of what your regular symptoms are typically like. Sure - they ebb and flow for most of us, but we often have a baseline that is typical.

Once you have several weeks clean of the pramipexole, you'll have a better idea of what it is like. Then you can better decide what you need to do. You may find that you don't need a daily drug! You may find that you can continue with pramipexole, but take regular breaks from it so you do not augment again.

Isn't it nice to be on the other side of the worst of it?
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.

mudslide
Posts: 37
Joined: Sun Jun 08, 2014 7:23 am

Re: Well, THAT was interesting!

Postby mudslide » Fri Jun 13, 2014 11:40 am

4:15 a.m. -- Alas, I have not had another symptomless night, and once again I'm getting the distinct impression that the oxy is mimicking the Mirapex, in that sx start *after* I take the oxy. It feels as though the Mirapex is out of my system now -- I started feeling fully human again a couple of days ago. I think whatever's going on is attributable to the oxy. It also seems to be losing its effect ever more quickly. I fell asleep tonight at 9:30 only after two half-oxys, woke with sx at 11:45, took one oxy, and am now awake again. Anyway, not to continue with this blow-by-blow account, I'm wondering whether anyone else has had this experience in which the oxy seems to bring on sx. My doc has offered as alternatives oxycontin and methadone -- if oxycontin is as closely related to oxycodone as it sounds, I'm thinking I should give the methadone a try. For now, after another 1/2 oxy I've quit twitching, so I'm going to hit the sack again. I'm thankful to have a doc who, if not fully knowledgable about WED, is very willing to work with me nonetheless. Thanks again to all of you out there!

QyX
Posts: 541
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Well, THAT was interesting!

Postby QyX » Fri Jun 13, 2014 11:53 am

I know the twitching from Oxy. In my case it went away after some months.

There are also other opiods except Methadone which you can try. The most common are Morphine (my preference), Hydromorphone and Oxymorphon.

I never had twitching with Morphine and Hydromorphone. Oxymorphone is not available in Germany.

Oxycontin is nothing else then Oxycodone. It is the original name.

Oh, and I always was taking long acting formulas since I have symptoms 24/7

mudslide
Posts: 37
Joined: Sun Jun 08, 2014 7:23 am

Re: Well, THAT was interesting!

Postby mudslide » Fri Jun 13, 2014 2:55 pm

THANK YOU, QyX! It's so helpful to know someone else has had the same experience. Symptoms 24/7… hard to imagine. You have my sympathies. I hope you've found a med that's reliable for you.

QyX
Posts: 541
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Well, THAT was interesting!

Postby QyX » Fri Jun 13, 2014 4:20 pm

mudslide wrote:THANK YOU, QyX! It's so helpful to know someone else has had the same experience. Symptoms 24/7… hard to imagine. You have my sympathies. I hope you've found a med that's reliable for you.


Yes. When I strictly follow me schedule I am almost 100% free of symptoms.

ViewsAskew
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Re: Well, THAT was interesting!

Postby ViewsAskew » Fri Jun 13, 2014 11:43 pm

Maybe because a few of the WED specialists in the US like methadone, it's often used in the US. I've been prescribed methadone, hydrocodone, hydromorphone, ocycodone, and levorphenol. No one offered fentanyl or morphine. I can't recall many people here who've said they used morphine - may be something harder to get in the US?

Of all I've used, methadone is the only one I can tolerate. All others made me angry - I would clench my jaw, and feel very stressed - for lack of a better description. Just shows that we often need to try multiple things to get to the right one for us.

If your symptoms are closer to moderate, you might try tramadol and see what happens.
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.

badnights
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Re: Well, THAT was interesting!

Postby badnights » Wed Jun 18, 2014 7:32 am

Oxycontin is not the same, QyX - - it's the continuous-release formulation of oxycodone. Mudslide, I think you're taking regular oxycodone, right? The contin version takes longer to kick in - 1-2 hours I think - but once it has kicked in, the effect stays for a lot longer. It's supposed to be 12 hours, and although that's debatable, it's certainly longer than the regular version. You could take it in the evening 2 hr before bed and have a more stable amount in your system through the night, which should give you a better sleep, especially during this period when you might still be influenced by Mirapex withdrawal (which could last as long as 4 weeks).
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

QyX
Posts: 541
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Well, THAT was interesting!

Postby QyX » Wed Jun 18, 2014 10:43 am

Ok

I though there Is Oxycontin XR and an immediate release formula.

Most of our doctors don't prescribe fast acting/immediate release formulas of opioids because of a higher potential for abuse and addiction.

I most take long acting formulas. For me the long acting Morphine works about 8 hours. So I take three doses per day. When I have additional symptoms at night I can take some fast acting Morphine but to be honest: I don't feel any difference at all. Most of the long acting formulas are made in a way that 50% of the drug is immediately release and the other part then absorbed slowly after the immediate release part has been used.

I think there is simply reason why Morphine isn't offered so much in the U.S. There is simply a better marketing for the newer opioids like Oxycodone and Hydromorphone. When Oxycodone was new on the market they said it will have much less side effects then Morphine and less addictive. Of course this wasn't true as it turned out later.

There is some controversy which opioid might be more addictive but when it comes down to it there really isn't much of a difference. Most important factor for abuse potential is the route of administration. In the past it was very easy to crush the big Oxycontin pills and sniff them, smoke them or even inject them. So there was a high rate of Oxycodone abuse. (See Florida in the past)

glfngrl
Posts: 29
Joined: Thu Dec 13, 2007 3:50 pm
Location: Thomson, GA

Re: Well, THAT was interesting!

Postby glfngrl » Wed Jun 18, 2014 1:47 pm

Mudslide,

Sorry you are having these difficulties! However, I am convinced that the older we get, the more problems we encounter with RLS. (I'm 75, and first had symptoms when pregnant at age 22; symptoms were intermittent until I was about 55, and have become increasingly harder to manage.)

The "codone" drugs do have some strange side effects at times for me, too. If I use them with any consistency, they will always control the leg problems, but - 1. I will only sleep soundly for a couple of hours, then wake up too alert to get back to sleep; 2. Sometimes cause weird dreams; 3. My body seems to be asleep, but my mind simply will not "shut off".......this is worst of all. I am awake, but not awake, and the following day, I feel as if I have not been to bed at all.

Check out my earlier posts in this thread for info on what currently works for me. You might do a trial run of Requip, but it is another DA! I have had great luck with Tramadol/Requip in tandem, but have never taken more of either than what is the currently recommended dosage. (Not because of any "vision", but because I was "saving" the larger doses for later on when I augmented; maybe I inadvertently circumvented that very thing! God is good!)

Good luck with finding the right combo ~ I firmly believe combos, and dc-ing each drug occasionally (while substituting with whatever your doc will prescribe) is a good method to try.

Jane in GA
Give up is not in my vocabulary!!

hope
Posts: 6
Joined: Thu Jun 26, 2014 9:32 pm

Re: Well, THAT was interesting!

Postby hope » Sun Jan 11, 2015 6:49 am

I tried oxy for my back pain and as usual they gave me the generic and I broke out in hives I took the bottle back to the doctor and said have fun this is not for me! Has anyone tried fentanyl patches?

ViewsAskew
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Location: Los Angeles

Re: Well, THAT was interesting!

Postby ViewsAskew » Sun Jan 11, 2015 8:24 am

Fentanyl has been used by a few of our members, but not very frequently.
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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