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.

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rvjimzhr1
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Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Thu Mar 16, 2017 9:28 pm

I have what I consider to be a minor, relatively speaking, case of RLS that progressed over many years from just an irritation to a regular, nightly condition preventing me from going horizontal.

I've been on Requip for about 5 years, after augmentation/graduating from CarbidobaLevodopa. I started at .5g and now take 1.5g at bedtime and often another 1g in the middle of the night. This works well much of the time.

Now the reason for this post. I am 74 male and I have always had an active sex life. As I've aged I've had the usual, occasional decrease in ability. I've taken ED drugs, Cialis and Viagra, occasionally for 20 years and more frequently as I've aged. I've had the same Urologist for 20+ years and he has consistently prescribed the ED drugs with little or no discussion. Recently had our first 'in depth' discussion about my ED which is more and more common and not helped particularly by the Cialis or Viagra. He spent a minute or so on his computer and told me that the problem is the Requip and that a side effect of Requip is ED.

I've read for years that one side effect of Requip is Sexual Addiction but have never found anything anywhere which talks about ED and Requip. I mentioned that and the doc insisted......your ED caused by the Requip. He told me I'd just need to decide what was more important to me, sex or relief from RLS!

The only side effect I've experienced with Requip is insomnia and, for me, that is tolerable WITHOUT RLS. I don't seem to be moving quickly toward augmentation so would prefer to continue the Requip. I'm otherwise healthy, typically see a doc only for an annual physical where we review test results which are always normal. We are alert to my levels of minerals and I've experimented with supplements over the years.

I'm ready to go talk to another Urologist but remembered this forum and thought I'd post here first.

Any thoughts appreciated. Thanks!

Jim

ViewsAskew
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Re: Requip & Erectile Dysfunction ???

Postby ViewsAskew » Thu Mar 16, 2017 11:14 pm

I found this study - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2802250/

My hypothesis would be that ropinerole (Requip in the US), by helping make dopamine more available (as it is not in RLS) would actually likely help. I didn't see anything in a quick search that ropinerole was responsible for ED.

BUT - if you are augmented, that might change things. I don't know the science and brain chemistry of augmentation well enough to guess....
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: Requip & Erectile Dysfunction ???

Postby badnights » Fri Mar 17, 2017 8:15 am

I was amazed to learn that both ropinirole and pramipexole are being used to treat sexual dysfunction. Talk about playing with fire! Some medications can have completely opposite effects in different people, but I'm leery of why they actually seem to work... anyway, back to the topic -

Decrease of sexual desire or performance is listed as a possible side effect of ropinirole at drugs.com.

I looked up pramipexole too, since it has been discussed on this board in that context before. Impotence, loss of interest in sex, and trouble having an orgasm are all listed as possible side effects (rxlist.com).

How to choose which is worse, life without satisfying sex or life with WED/RLS? I have a similar problem, except mine is caused by long-term opioid use and causes great difficulty in achieving orgasm, and my choice - - well, I'm looking for ways to go off the opioid but my options are limited, and as much as I hate hate hate the problem - I bitterly have to admit I'd rather have that problem than unrelieved RLS/WED.

But you might have a choice. There are other medications besides ropinirole. Even another DA might not have the same side effect. One consideration is that you seem to be stable, why rock the boat. On the other hand, your stability might be fragile; you're on a high dose of ropinirole. For WED patients the recommended max is 1 mg. Risk of augmentation increases as dose increases, as time goes by, and with lower ferritin concentrations. Perhaps you're not having problems yet because your ferritin is over 100 ng/ml?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

rvjimzhr1
Posts: 78
Joined: Thu Mar 16, 2017 7:46 pm
Location: Medford, OR

Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Fri Mar 17, 2017 7:59 pm

Thanks to all for your comments! I forgot to mention but in addition to the ED, I also, recently, am experiencing extreme difficulty reaching orgasm. Like you, badnights, if forced to choose, I'd have to choose the stability I'm getting from Requip. I'm going to look into natural/holistic treatments for the RLS though that has never been a path I thought I'd pursue. I also, in the past several years since laws on marijuana possession have been relaxed here in Oregon, have been experimenting with smoking as well as oils and edibles. I've learned that smoking will immediately quiet my restless legs and that edibles early do not prevent RLS hours later while under the influence of the weed. I don't want to smoke, for health reasons, so will investigate the effectiveness of a vaporizer instead. If I believe that the combo of vaping and edibles will control the RLS, I'll withdraw from the Requip and cross my fingers. What's the worst that can happen? I go back onto REquip. What do you folks think?

Jim

ViewsAskew
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Re: Requip & Erectile Dysfunction ???

Postby ViewsAskew » Fri Mar 17, 2017 9:09 pm

Pramipexole used to make it impossible to reach orgasm for me. I stopped it because of augmentation and went back on it - carefully - a few years later and now that doesn't happen. I wonder if keeping the dopamine unnaturally high for sustained periods is part of this? Thankfully, this is now rarely an issue for me.

Jim - one thing almost all of us who have taken dopaminergic drugs - ropinierole, pramipexole, etc. - is that we always have difficulty sooner or later with it increasing our symptoms. None of use can take it forever without having to stop. I think stopping is a great idea - but depending, it may not be easy. You can try to decrease gradually over a week or so and see what happens. If your RLS gets worse, let us know and look up a term called augmentation.

You might also want to research kratom. Works well for several people here. It doesn't help me stop the sensations, but it works great on insomnia for me. Others use it for sensations.
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
Posts: 78
Joined: Thu Mar 16, 2017 7:46 pm
Location: Medford, OR

Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Sat Mar 18, 2017 12:32 am

I have not read much on augmentation or just how slowly to withdraw from the drug. My RLS is in my arms now as well as my legs and I get symptoms at 3-5AM often now and I believe those are symptoms. At the moment I am in the final stages, I hope, of a severe respiratory illness so have not smoked weed in a month; and, because I'm not convinced that smoking didn't bring on this very unusual, for me, illness, I'm planning on not smoking again. So, when I get well I'll have explored more about vaporizers and augmentation and I might be prepared to go down that road toward no dopamine agonists. Correct me if I'm wrong, but if I can withdraw I can always go back on Requip down the road if I just can't make the weed or some other natural remedy work for me.

Jim

ViewsAskew
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Re: Requip & Erectile Dysfunction ???

Postby ViewsAskew » Sat Mar 18, 2017 5:13 am

My best guess is that you have augmentation, Jim. It will likely be a miserable withdrawal. Stopping isn't that hard - if you are on a low dose you can stop cold-turkey, a higher dose you can reduce over a couple weeks; but once you stop, the symptoms truly are like nothing you have ever had. Enough of us have done it that we are pretty confident of misery when you do it :-(. Some docs think you are better off if you just go through that period without anything to help. Others believe opioids should be used.

Highly suggest reading the document in badnights (one of our mods) signature. Very helpful. There are other helpful threads - you can likely find them easily.

Per going back on it...if this is the first time you augmented, you certainly can. Docs suggest that once you augment two or more times that you should not use them again. But, I augmented multiple times and still use one. I just use it very carefully and always take breaks so I won't augment again. You should never use them regularly again.

And, I cannot remember....did you have your ferritin tested and do you know the actual value?
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: Requip & Erectile Dysfunction ???

Postby badnights » Sun Mar 19, 2017 12:11 am

When you follow the link in my signature (below) you will come to a page that lists a number of items in red. They are all useful and informative! but the bolded ones at the top of the list are best, and if you want just a few to take to your doctor, get the Foundations RLS Medical Bulletin, Buchfuhrer's 2012 paper, and the IRLSSG's 2015 white paper.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Stainless
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Re: Requip & Erectile Dysfunction ???

Postby Stainless » Sun Mar 19, 2017 4:40 pm

I'm 15 years younger but it did the opposite to me for the year I was on ropinirole. I figured it was the dopamine. When I quit it took a few months for my sex drive to fully return, which was a big relief.

legsbestill
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Re: Requip & Erectile Dysfunction ???

Postby legsbestill » Sun Mar 19, 2017 7:10 pm

I would second what others have said: it sounds as though you have augmented. If you have, it is definitely worth coming off the ropinerole. But you do need to be prepared for it to be very, very hard, particularly if you have been on a high dose. You will be very glad if you see it through though and you may find that your symptoms settle down to a much more manageable level once the drug has washed out of your system. I would suggest that you consider kratom to help over the withdrawal period in addition to cannabis. I use both. Unlike Viewsaskew, I find kratom helps a lot with the rls urge-to-move symptoms (but I think my post-augmentation rls is nowhere near as severe as hers) but does not help me get to sleep. Cannabis is fantastic to get me to sleep but does not help with the urge-to-move symptoms. I take it as an edible about an hour before I go to bed and find it gives me at least 4 hours good sleep. I also vape it occasionally using a pax 2 vaporiser which was recommended by others on here - very expensive but I'm glad to have it as worry about the effects of smoking.
Good luck.

debbluebird
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Re: Requip & Erectile Dysfunction ???

Postby debbluebird » Sun Mar 19, 2017 8:04 pm

The DA I took made it almost impossible to have an orgasm, yet at the same time increased my sex drive. It was very frustrating. Even though I am female, I would think it would affect males too.

rvjimzhr1
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Sun Mar 19, 2017 8:29 pm

Thanks once again for all of your replies!

Unfortunately, I have no RLS medical experts in my neck of the woods and my docs at the VA seem to have no clue about RLS. I self-diagnosed my RLS in May/2004, took it to my VA doc along with suggestions for Carbidopa/Levodopa and Mirapex as suggestions for meds. I took CL until Sept/2012 when I started taking Requip. It took a few weeks before I settled on a dose of .5MG at bedtime. I don't recall when I bumped that to 1 and then to 1.5MG over the years. In the last few days I bumped back to 1MG at bedtime and just once I woke at 4AM with symptoms. I fought off the symptoms and went back to sleep which is rare. Maybe that's because I'm still taking Tussionex w/codeine for cough and Unisom for sleep. For a long time I've had insomnia, sometimes for several hours each night. My thoughts have always been that insomnia WITHOUT RLS is tolerable. The sexual side effects are the "big deal" for me as well as my girl friend.

I'll continue to look for an RLS doc. I believe I will go to homeopathic doc and get tested for all the minerals, testosterone and other important hormones and proteins. Assuming all the levels are satisfactory, then I'll seriously consider going off the Requip. Then I'll evaluate just how bad the symptoms are and try to control them by experimentation with diet to include sugars, artificial sweeteners, alcohol, etc. I'll buy a good vaporizer and use weed to quiet my legs, I'll experiment with sub-lingual oil and edibles to prevent flareups during the night. I'll look into Kratom as an alternative. Maybe I'll get lucky and, in that process, will end up sleeping all night and having a healthy sex life.

So, I have some questions:

1. Is a reduction of .5MG at a time reasonable? Over how long a period? How do I know when to reduce dose again?
2. Is is reasonable to expect that I will be able, during the withdrawal, to either fight off the symptoms or quell them with MJ?
3. Once I am off Requip, what can I expect RLS to become? More severe as time goes by? Less severe?
4. Should I expect the MJ to be any less effective during or after withdrawal?
5. Re: Kratom, I read that sexual dysfunction is a side effect. If I'm rejecting Requip for that reason, how/why is Kratom an good choice?

Thanks folks! I'm getting really excited about the possibilities and I really appreciate all the input here!

Jim

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Re: Requip & Erectile Dysfunction ???

Postby Rustsmith » Mon Mar 20, 2017 12:59 am

Jim, that is quite a combination of medications that you have been taking. I will address your comments below. But first, the Unisom that you have been taking is a first generation antihistamine. These products are notorious for aggravating RLS issues. It is certainly not the entire cause of your problems, but eliminating it should help at least a little. The Tussionex with codeine has probably been helping. Products that contain opioids, such as your codeine, are frequently selected by knowledgeable physicians as RLS treatments following recovery from augmentation. They can also be an effective way of easing the problems of getting off of dopamine meds.

As for getting off of Requip, since you have reduced your dose from 1.5 to 1mg per night, you have dropped yourself back to the normally accepted max dose of Requip. There are two approaches that can be taken from here. One is to simply stop cold turkey. This approach is very difficult as you will probably not get any sleep at all for at least four days, and possibly even longer. Your RLS will also go into overdrive during this period. The other approach requires the help of your physician, because it requires the use of a strong opioid medication to help cover the dopamine withdrawal symptoms. You can find out more by looking through the information in the Augmentation forum, the links in the signature line of badnights, the augmentation literature from the Foundation or some of the information on augmentation available from the Johns Hopkins RLS clinic.

Now for your questions:
1. Dropping by 0.5mg is reasonable, but will just draw out the time that you go through withdrawal. As stated above, the normal recommendation is to either stop cold turkey and bit the bullet with respect to severe sleep deprivation for at least a week or else to stop with the aid of an opioid medication that you can choose to reduce after you have recovered from the dopamine withdrawal problems.
2. The experience of others has been that MJ is not strong enough to cover the problems associated with dopamine withdrawal. To fight off the symptoms, you need a strong opioid.
3. Once you are off the Requip, your RLS will eventually return to whatever is your current baseline condition. That could be a month or it could be six months. It will almost certainly be less of a problem than your current augmentation driven symptoms, but how much better varies from person to person. As for the long term (years), most of us have seen a progression toward worsening symptoms as we get older. But, I cannot stress enough times, this disease varies from person to person, so the experience of others may not apply to you (at least we can hope that it doesn't).
4. MJ probably won't provide a lot of relief during dopamine withdrawal. Experience has shown that some are able to get a great deal of relief using MJ once they are back to whatever is normal for them. But understand that modern MJ products vary immensely from strain to strain and a variety that is available in one area will probably not be available in another state. So, each of us who uses these products has had to experiment to find out what works best for us. If you search our discussions, you will find quite a bit of advice on what sorts of products to try, especially since smoking MJ is generally not very good for your health. There are much healthier alternatives that can provide the same benefits.
5. As you have probably seen repeated many times on this board, we all react to different meds and natural products in different ways. Kratom has helped many of us control their RLS. It would definitely be worth a try. If you have the sexual dysfunction side effects, you stop and haven't lost very much with the experiment.

Hope that helps.
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 » Mon Mar 20, 2017 4:55 am

I can't add much to that. Good info.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

rvjimzhr1
Posts: 78
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Re: Requip & Erectile Dysfunction ???

Postby rvjimzhr1 » Mon Mar 20, 2017 8:19 pm

Thanks for your advice Steve! As to the meds I've been taking, the Unisom and cough syrup have been temporary during a month long respiratory illness. I've probably used the Unisom off and on for 40+ years for a couple of nights now and then. I think I've suffered with the RLS, not knowing what it was, for 50 years or so. I'm done with the Unisom now and probably the cough syrup in a day or so. I'm prepared to face the withdrawal from Requip if, for no other reasons than, I might hope to shed the insomnia and sexual problems while being able to manage the RLS without it.

I have an appointment last week of April with my primary care doc. That will be the only source or resource for opioids to help me withdraw and I really don't expect to be able to obtain a RX for them. I will take articles on augmentation from your link for that doc to read and we'll see how it goes. I debating with myself about whether to begin that withdrawal on my own now or to wait 5 weeks for what i expect to be a wasted discussion with my primary doc. Probably the sensible thing to do would be to wait since I've suffered these side effects for a long period anyway, but I have not yet made that decision.

My last thoughts are on the opioids, methadone and kratom. Though I don't have a compulsive or addictive personality, at least when it comes to drugs or alcohol. I've actually got lots of hydrocodone from previous back issues and a major surgery and I take a pill or two now and then, maybe once a year for a back issue. Having said that, I am not excited about going on any of these drugs long term. I'll look further into the kratom. Once again, I appreciate all the feedback from y'all!

Jim


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