Requip & Erectile Dysfunction ???

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.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Rustsmith
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Re: Requip & Erectile Dysfunction ???

Postby Rustsmith » Mon Mar 20, 2017 11:15 pm

Jim, a couple of additional thoughts...
1) You are probably correct that you are not going to have much luck getting a prescription for an opioid from your PCP. Since you have experienced augmentation, you really need to be under the care of a specialist who understands treating RLS and more importantly, knows how to handle RLS patients who have augmented. Usually this is a neurologist, but many neurologists are just as clueless about treating RLS as are GPs. Before visiting your PCP, try researching the neurologists in your area and/or call their offices and ask to speak to a nurse. Inquire whether the doctor has experience treating RLS patients with augmentation. Also ask whether the doctor is willing to prescribe opioids for severe cases of RLS. If you have any luck, you can then ask your PCP for a referral to that doctor. When checking the neurologists out on the Internet, look for references to the treatment of movement disorders, which is a specialty within neurology that includes RLS.
2) Take a look at the Foundation's Quality Care Centers to see if one of them is within a "reasonable" travel distance. Many of us go great distances to see a doctor who "gets it" when it comes to the treatment of RLS. The doctors at these centers are the best of the best when it comes to providing care to RLS patients. Unfortunately, it can also take a while to get an appointment with one of them because they are in such great demand.
3) If the Quality Centers are all too far away,check into whether there is a doctor in the neurology department at a medical school "near" you who treats movement disorders. If so, it will almost certainly require a referral from your PCP to get an appointment, but it would be worth a try and these doctors are usually able to prescribe opioids since they treat the more severe neurological cases.
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.

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Wed Mar 22, 2017 10:03 am

As to whether you should start the process now or wait til after your appt, the fact that you have a stash of hydrocodone might influence your decision in favor of doing it now. The usual dose range for WED/RLS is 2 to 10 mg every 4-6 hr, according to the blue book (Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening).

When you see your doc, it would be best to have the parts of the articles that pertain to your situation highlighted before you go. When you're there, address only those few points; and leave the papers with him if he'll take them.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Wed Mar 22, 2017 5:58 pm

Night before last I cut back to 1MG with no additional dose and have taken no more cough syrup or Unisom. Both nights my insomnia and RLS have come back. I've decided to just go "cold turkey" and will take no more Requip. I have one last question: When will I know that the withdrawal is complete? I've heard 4 days and more likely a week or more. Thanks!

Jim

ViewsAskew
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Re: Requip & Erectile Dysfunction ???

Postby ViewsAskew » Wed Mar 22, 2017 6:13 pm

rvjimzhr1 wrote:Night before last I cut back to 1MG with no additional dose and have taken no more cough syrup or Unisom. Both nights my insomnia and RLS have come back. I've decided to just go "cold turkey" and will take no more Requip. I have one last question: When will I know that the withdrawal is complete? I've heard 4 days and more likely a week or more. Thanks!

Jim


Jim, it will vary - which is why you see so many different times listed. The earliest is about 4 days for the worst to be over. The longest for the worst to be over? Maybe 20-25 days - and thankfully that is more of an outlier. Most people are seeing improvement by day 10-12, I would guess based on what people have said here.
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.

legsbestill
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Re: Requip & Erectile Dysfunction ???

Postby legsbestill » Wed Mar 22, 2017 11:13 pm

Good luck, Jim

rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Thu Mar 23, 2017 1:19 am

Thanks everyone! RUSTSMITH, I followed your advice and found two local docs whose offices tell me that they are familiar with, and treat, both RLS and augmentation. Both are affiliated with local hospitals. One is a Pulmonary and the other a Neurology specialist.

Shame on me! for not doing this years ago. I've really dropped the ball by relying on a primary care doc at the local VA. For so many things they do a great job but I've put myself in this "box". by not doing my own search for a local expert. I'm now waiting for a call back from the VA so I can request a referral to one of these specialists.

I'm going to give this withdrawal a try on my own. After lots more thought and reading I'll not try it with my own drug 'stash'. If I find I just can't do it on my own, at that point, I'll start the Requip again and then wait for what may be a few weeks before I can see the specialist. Tonight will be the first without any Requip and I'll just see how I feel tomorrow.

Jim

ViewsAskew
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Re: Requip & Erectile Dysfunction ???

Postby ViewsAskew » Thu Mar 23, 2017 9:00 am

Jim - I did the same thing. Well, it was a Neurologist, but I didn't question him until my life was miserable and I could no longer work. My augmentation was 24/7 and I felt my life was over. Never again. I do not want to be one of those annoying patients who says, 'But I read it on the internet," to everything the doc says, but never again will I blinding follow ANY treatment.

A lot will depend on your physiology. I tried three times on my own - I couldn't do it. I lasted 4 or 5 days one time, less the others. For most of us, the RLS increases in severity when you stop the DA (dopamine agonist). My arms were involved, my shoulders, my hands, my legs from feet to thigh. I had PLMW - periodic limb movements during wakefulness. I normally have PLMS - periodic limb movements during sleep. During this washout phase, I would be pacing to deal with the RLS and my leg would shoot out in these PLMWs.

Not saying this will happen to you!!!! Just know that there is NO shame in not being able to get through this. And, you can get tired and screw up your "stash" meds, so carefully count them ahead of time and lock the rest away or give to another person in the house, if there is someone.

The best thing you can do is try to just let go of it as it happens. It is what it is, it is NOT going anywhere right now, but it will eventually stop. It can really increase anxiety, so putting it in perspective can help bring that anxiety down.

Hope those specialists really do know what they are talking about. Sometimes were are lucky and they do. Sometime they have seen one patient and do not have much depth to that experience they say they have. If possible, find out how many patients they have treated and what method they use, either A) weaning off of everything and taking nothing for about ten days then starting on an alpha 2 delta ligand (what they do at Johns Hopkins), or B) using an opioid to get through the worst, then tapering off that and starting on an alpha 2 delta ligand or staying on an opioid (Dr Buchfuhrer has written about this; other docs do it, too).
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.

rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Thu Mar 23, 2017 5:04 pm

Thanks for your support and advice Ann! Just finished my first night w/o Requip. The legs are manageable between walking and sitting upright and some recline time. I got 45 minutes horizontal at one point. No sleep for past 24 hours after 2 hours yesterday morning. Twice vaping seemed to have no effect on leg motion. Will keep you posted. BTW, I saw a post of yours on vaporizers. Have you see my query?

Jim

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Re: Requip & Erectile Dysfunction ???

Postby Polar Bear » Thu Mar 23, 2017 6:15 pm

I'm wishing you soooooo... much of everything as you do this.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Re: Requip & Erectile Dysfunction ???

Postby ViewsAskew » Fri Mar 24, 2017 4:30 am

Hi Jim - I did see it and answered. I will say that vaping never helped with RLS or PLMS. What it does for me is to help me sleep and overcome they hyper-insomnia that comes with opioids.

You've one day down and hopefully only 4-7 to go before it tips the other way!!!!
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.

rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Fri Mar 24, 2017 10:38 pm

Wow. I guess I was spoiled my first two nights because last night the legs started moving earlier and I couldn't sit at all. I stood in a corner to read, when able, but mostly walked from 1130 til 530 when the symptoms seemed to quiet slightly and I sat in my recliner. I was pretty much a zombie, without sleep for about 46 hours, when finally got 3 hours sleep in bed. I found that neither the edible or the vape did a thing for the movements. All it did was keep me stoned while walking and standing. I'd also read where sitting and playing a musical instrument some how calmed the legs. So in the middle of the night when I could not sit in any kind of chair, I sat down with my mandolin and played.....and the legs calmed! Who'da thunk it? Problem was I was so stoned and tired that I could hardly play. But it did break up the routine to that point which was nice! Onward.....

Jim

badnights
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Re: Requip & Erectile Dysfunction ???

Postby badnights » Sat Mar 25, 2017 10:12 am

Way to go! They say that anything that ties up our sensory processing can interfere with the aberrant WED signals. Your mandolin playing was like I use a hot bath while watching a really good movie. You had mental activities that require intense focus, combined with arm and leg movements to control the mandolin. The physcial movements can bblock WED sensations at tjhe spinal cord, the mental work can stop them in the brainstem or wherever they come from.

I am zopicloned and this will have to be my last post tonight even though I have not read many.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

legsbestill
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Re: Requip & Erectile Dysfunction ???

Postby legsbestill » Sat Mar 25, 2017 1:31 pm

Wow; playing the mandolin during d/a withdrawal. That is quite something. Most people content themselves with crying ... I applaud you.

I am not surprised to hear that cannabis is not helping. I think it is too much of an ask for cannabis to deal with that level of symptoms. I use cannabis regularly but it doesn't help with the urge to move at all - I need something else for that - I use it to overcome alerting so that I can get to sleep. It might be better not to use it while withdrawing from requip because you are bound to be awake and up moving around and it's better not to be too stoned as well as exhausted.

You could try Kratom which might help but most likely wouldn't be man enough for the job either. You could also try some OTC codeine meds but really the only thing that'll help much in this acute phase is opiates.

I'm guessing you won't have got much sleep last night either. Hope you are managing to hang in there. Every bad night is bringing you a bit closer to being d/a free. And it is only once you get that requip out if your system that you can really assess your situation and get to grips with how much and what medications (if any) you really need.

I wish you the very best of luck over the next few days. It is very interesting reading of your progress.

Rachel

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Re: Requip & Erectile Dysfunction ???

Postby Polar Bear » Sat Mar 25, 2017 6:47 pm

Part of my treatment cocktail is cocodamol 60/500 x 2.

With regard to OTC codeine medications the best that I would be able to get locally would be 8mg codeine/500 paracaetamol.
It would take quite a few of what is available OTC to get a decent dose of codeine -- which would mean an unacceptably high dose of paracaetamol.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Requip & Erectile Dysfunction ???

Postby ViewsAskew » Sat Mar 25, 2017 8:22 pm

To push Beth's analogy, try getting into a vigorous discussion (or argument) with someone when you think your symptoms cannot be stopped. All the sudden you realize that they haven't bothered you for awhile. It is very similar to our bodies and pain. It just always comes back....
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.


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