Getting off pramipexole etc.

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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ViewsAskew
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Re: Getting off pramipexole etc.

Postby ViewsAskew » Tue Mar 01, 2016 3:31 am

I spoke with Dr. B at my latest appt about DAWS. He said he has had almost no problems with it and always goes cold turkey. He is just one doc, but that was encouraging to hear that he hasn't personally seen it very often - not that that helps any members who have suffered from it!
Ann - Take what you need, leave the rest

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Polar Bear
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Re: Getting off pramipexole etc.

Postby Polar Bear » Tue Mar 01, 2016 2:10 pm

It's always good to hear a positive comment from such as Dr B.
Betty
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dgarmaise
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Re: Getting off pramipexole etc.

Postby dgarmaise » Thu Mar 03, 2016 1:27 pm

I am sure I have posted since 2 February. Maybe it was another thread? Or a sub-thread? I was prescribed 10mg of morphine twice a day to get me through tapering off the Neupro patch. It wasn't nearly enough, and there were side effects, but I got off the patch. Dr Nuj, the pain doctor at Bumrungrad switched me to 30 mg oxycontin ER once a day to get me me through withdrawal. That worked fine for my nights -- the first night I slept 11 hours, which remarked on on some other thread. But it did not give me 24 hour relief and it did give me side effects, mostly dizziness. Then, she switched me to the fenatyl patch, 12 mcg/hr, which I just started 24 hours ago. It is not enough to mask my night-time symptoms. The doctor is now gone on holidays. She made no arrangements for me to see anyone else in her absence, I had to beg her to also give me some more oxycontin in case the fentanyl does not work. So, I am on the fentanyl patch, which lasts 72 hrs. I have some morphine around. I have some oxycontin around. I can't get a clear reading from the Internet or the literature I have seen about the wisdom of combining opiates. What about gabapentin together with fentatyl? Anyone trying that? I fear another sleepness night lies ahead.
David

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Re: Getting off pramipexole etc.

Postby Polar Bear » Thu Mar 03, 2016 1:55 pm

I think that Fentanyl takes about 12 - 24 hours to reach its working level and that during this 12 - 24 hours period it would be expected that you would need alternative/additional pain relief, although not round the clock. I hope that tonight is a better one.
Betty
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dgarmaise
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Re: Getting off pramipexole etc.

Postby dgarmaise » Thu Mar 03, 2016 2:01 pm

I put on the fenatyl patch 24 hours ago, so it is working now. It is jut not strong enough. I just heard from my doctor. She said to add a second patch. I pointed out that she had only prescribed me 11 patches. I don't see her again until 1 April. The second patch will only take effect in 18-24 hours. What do you suggest that I take as additional relief for tonight?
David

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Re: Getting off pramipexole etc.

Postby Polar Bear » Thu Mar 03, 2016 4:12 pm

I have no personal experience of using the stronger opioids, hopefully another member with relevant experience/knowledge may be able to discuss this with you.

In the meantime - you are on the lowest dose and your doctor has told you to add a second patch.
Note: this is only my opinion.... but if it was me..... I think it would be best to be on this lower dose for a few days before moving the patch dosage upwards. It is so disappointing for you that this patch hasn't worked on the first lower dosage and 'if it was me' I'd add a low dose of whatever I had been taking most recently.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Re: Getting off pramipexole etc.

Postby ViewsAskew » Fri Mar 04, 2016 9:11 am

That's a tough one (as I sit here jiggling and wiggling).

PB has a good point. Does this build up in your system because of a longer half life?

I wonder if there is a calculator online that could tell you what is safe to take. Calling a pharmacist might be in order.
Ann - Take what you need, leave the rest



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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.

dgarmaise
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Re: Getting off pramipexole etc.

Postby dgarmaise » Fri Mar 04, 2016 9:50 am

Thanks, everyone, for weighing in on this.

PB, by the time I saw your last message I had already put on the second patch of fentanyl. I spent a horrible 6-7 hours from about 8 pm to 3 am. My head desperately wanted to lie down but my feet wouldn't hear of it. Finally, at 3 am, I took the plunge. I took a 30mg dose of oxycontin. I wasn't at all sure I should be mixing two opiates. And I really don't know if 30mg of oxycontin is considered a low dose. I did not have a lot of flexibility because my doctor gave me only the one dose of oxycontin (many pills, but all the same dose), probably because that is all the hospital had in stock. I would have preferred a smaller dose, which would have left me with the flexibility of taking more than one pill if required. I couldn't cut the pills in half because they were extended release. Anyhow, I slept from 3 am to 12 Noon. This afternoon I am groggy but I can function. Right about now (4:30 pm Thai time), the second patch will have kicked in. So, I should be okay for sleeping tonight.

Ann, calling a pharmacist in Thailand is not so easy. They are not as well trained; they don't dispense narcotics and probably don't want to even talk about them (given the prevailing attitudes towards narcotics in Thailand); and there is also a language issue.
David

ViewsAskew
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Re: Getting off pramipexole etc.

Postby ViewsAskew » Sat Mar 05, 2016 12:35 am

Yeah, I'd guess that would be hard. I wonder if you could call a Walgreens or other pharmacy in the US. They'd speak the language and wouldn't know where the call came from, I'd not think. Could be expensive, but you could use Skype or another similar thing.
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.

dgarmaise
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Re: Getting off pramipexole etc.

Postby dgarmaise » Tue Mar 15, 2016 12:05 pm

I am back with another update. This certainly has been an interesting journey. Not that it's over yet. Between about 5 and 15 February, I tapered off the Neupro patch. Dr Nuj, my pain doctor at Bumrungrad Hospital in Bangkok had given me 10mg tablets of morphine which I took twice a day. They did not help much. I struggled to get through each night, usually getting just one or two hours of sleep each time. When I saw Dr Nuj again on 19 February, I wasoff the patch but in withdrawal (or augmentation). She switched me from the morphine to oxycontin, one 40mg tablet each night. The first night I got 11 hours of sleep. I know I posted that here somewhere, but somehow I think I ended up in another thread. The oxycontin worked fine for getting me through each night. But my days were not so good. For one thing, the effect of the oxycontin lasted maybe 13-14 hours, not 24 hours. The last 3-4 hours before I took my pill each night were murder: My legs were really twitching. For another, I had side effects: dizziness, some nausea, difficulty concentrating. I reported all this Dr Nuj. She said I should switch to the fentanyl patch. One patch lasts 72 hours, the dose is 12 mcg/h. She gave me 11 patches and then went off on holidays, leaving no instructions for what I should do in her absence if I needed assistance. I tried the patch and it did not work very well. I emailed Dr Nuj to this effect and she replied that I should try taking two patches. I wrote back that she hadn't given me enough patches, but I guess she was gone by then. I tried two patches and it still did not work very well. So, I went back to the oxycontin. (Thank God I had persuaded her to give me both as a backup.) So, I have been on the oxycontin ever since, enjoying my nighttime sleeps, but struggling through each day. I don't see her again until 29 March. I don't think she is back from holidays until the weekend before that date. But, then, something clicked a couple of days ago. I realized that my withdrawal period was over. At least it felt that way. I stopped having problems with my legs during the daytime. And the 40mg of oxycontin now feels like an overdose. I realize that withdrawal works in strange ways and that maybe this is just a break. But it feels like it is over. So, now I have to figure out how to manage my symptoms from here until I see Dr Nuj again on the 29th. Last night, I tried 300 mg of gabapentin , but I still needed an opiate (I took oxycontin again). Tonight, I am trying 300 mg of gabapentin again and if that doesn't work, I am going to add 10mg or 20mg of morphine to see if that does the trick. If not, then I will keep on taking the oxycontin. I am hoping that the hospital has oxycontin in smaller doses since I suspect it will be part of my ongoing cocktail.
David

ViewsAskew
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Re: Getting off pramipexole etc.

Postby ViewsAskew » Tue Mar 15, 2016 5:48 pm

Sounds like you have something that is working - at least for now. Keep us posted on how it changes. And, great news that you haven't needed anything during the day lately!
Ann - Take what you need, leave the rest



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dgarmaise
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Re: Getting off pramipexole etc.

Postby dgarmaise » Sat May 21, 2016 6:00 am

Hi, again. Time for another update. I'll spare you the blow-by-blow version. I have been on oxycontin monotherapy for a couple of months now. I wish I could say that it was working fine, but I can't. I wish I could say: "Weaned myself off the DAs; switched to oxycontin; legs under control; sleeping fine; feeling great; no troublesome side effects; lived happily ever after." But I can't. I can control the legs but the side effects are no picnic. I can't seem to find a dose and a dosing schedule that works. I started off at 80mg oxycontin a day, divided into two equal doses: one around 7-8 pm and one around 7-8 am. I think I might have fared better had I started off at a lower dose, but the hospital had only 40mg tablets. At that dose, the side effects were: (a) light-headedness; b) dizziness;(c) difficulty concentrating; and (d) some nausea (sometimes). Plus (e) having trouble getting to sleep at night. Plus (f) being tired all the time and needing to nap a lot. The hospital finally got a stock of 10mg pills, so I have been trying to reduce the dose (slowly). That went okay initially, but then I was experiencing pretty much the same side effects (though I had fewer problems with dizziness and concentration) plus: The pills were not effective for 12 hours. Most of the time, they worked for about eight hours, after which I felt very uncomfortable, like I couldn't wait for my next "hit." That did not feel good. I managed to get the daily dose down to 40mg, but I wasn't feeling very good. It seemed to me that as time went on, I had fewer and fewer good hours and more and more bad ones. I am mainly talking about the side effects. My legs were ok most of the time, though I noticed that as I got down to 20mg a day, there were stretches where my legs were not happy, and not shy about telling me. I emailed my doctor. She advised me to go back to 40mg twice a day for three days. That is where I am at now; this is my third day. I feel better now than I did a few days ago, but I'm right back to where I started, which means problems with dizziness and concentration. Dr Nuj recommended that I take ritalin (methylphenidate) if I felt drowsy. She prescribed ritalin when she first prescribed the 40mg oxycontin. But the hospital gave me only seven ritalin pills. It seems Dr Nuj needed special permission to prescribe more. My appointment that day was in the evening, and she had left the hospital by the time I got to the pharmacy. I have mentioned this problem to her twice, but it seems to go in one ear and out the other. I did not pursue it because I was planning to cut down on the dose of oxycontin and I figured I would not need the ritalin. But now I am back at the original dose. I see Dr Nuj again on 27 May. I don't know what she will suggest and I don't know what I think ought to happen next. If we can't get oxycontin as monotherapy to work, what do we try next? Another opiate? I tried morphine and fentanyl already with no success. They won't give me methadone. There is no medical marihuana here in Thailand. Kratom is illegal, though many people use it. We are under a military dictatorship and the military is not exactly soft on drugs. They even fined people for playing bridge a few months ago because they thought they were gambling. Has anyone had success with combination therapy using an opiate and another drug? Any and all advice would be appreciated.
David

ViewsAskew
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Re: Getting off pramipexole etc.

Postby ViewsAskew » Sat May 21, 2016 9:19 am

I lived through a similar set of issues as you for two years before I finally found a solution - I do switch between a DA for 5 days, then the opioid for two. For awhile I switched more often - 2 on DA, 1 on opioid, 2 on DA, etc. I've done this for quite awhile. It's NOT perfect! But, it's the best I've come up with.

Another option is to add gabapentin - it can really help with the sleep and if it helps you, you could reduce the opioid.

Tramadol also could be helpful. For many people, it's a mood enhancer during the day. You could use it for early symptoms, then use less of the oxy.

Beth and I have both taken (and she still takes) modafanil - it's not perfect, either, but it can help with the sleepiness.

Not sure what you do for a living. When I could sleep on my own schedule, I'd just stay up when the opioid alerted me, usually about 20 hours instead of 16 that is usual. Then I'd sleep for 10-12 hours. It made my schedule crazy, but I had the fewest symptoms and side effects when I did it. Sometimes I'd be up for 25-30 hours...it just seemed like following what my body wanted was the best thing to do. Of course, it might not help you.
Ann - Take what you need, leave the rest



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Re: Getting off pramipexole etc.

Postby Rustsmith » Sat May 21, 2016 11:59 am

In the webinar presented by Dr Early on opiates https://www.youtube.com/watch?v=iCNI_UCj7SI, he states that if one opiate does not work or has unacceptable side effects, then you simply need to try a different one. His first recommendation would be methadone simply because it has a longer half life. So is it possible to try an opiate other than oxycontin?

I find it interesting that they seem more comfortable with ritalin than the opitates. In the US, ritalin is also a Schedule II medication. That puts it into the same class as the opiates when it comes to getting and filling prescriptions. It has proven to be very effective for treating some of the symptoms of my wife's MS, yet she has had to do battle with her doctors to get them to prescribe it for her.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

dgarmaise
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Re: Getting off pramipexole etc.

Postby dgarmaise » Sat May 21, 2016 12:46 pm

They weren't more comfortable with the Ritalin. The doctor was able to prescribe me as much oxycontin as she wanted, but the hospital only let her prescribe me seven ritalin pills. I've tried morphine, fenatyl and now oxycontin. They won't prescribe me methadone. So what's left to try? As for switching between a DA and an opiate, I am scared to try a DA again. I was on pramipexole for years and years. I had augmentation and had to keep increasing the dose. But I had another side effect that I haven't heard anyone else complain about: a serious loss of energy, especially in the evenings. That's why I was determined to get off the DAs. As soon as I did get off them, my energy rebounded. So, I wonder if that side effect was due to the increased dose of pramipexole I had to take. Or whether I would have the same side effect at any dose. Re gabapentin, I have tried it a few times. It seemed to help a little at doses above 300mg, but there were side effects, of course, including sleeping a whole lot. How much gabapentin do most people need?
David


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