Requip & Erectile Dysfunction ???

[stjohnh]

Clearly iron is important to some, perhaps all, RLS patients. I keep my ferritin over 100. It is very likely that genetic and other factors play a role in the liklihood of an individual's developing augmentation, and similarly the dose and duration of treatment that causes a person to augment varies as well.

[ViewsAskew]

Clearly iron is important to some, perhaps all, RLS patients. I keep my ferritin over 100. It is very likely that genetic and other factors play a role in the liklihood of an individual's developing augmentation, and similarly the dose and duration of treatment that causes a person to augment varies as well.

Yes - I think it is critical for all. But, the issue is that we all cannot get it to our brains where it is needed. Thankfully about 80% of us can, so it's always worth testing our levels and trying.

Now, when they can pass the blood brain barrier - and several ways are being developed - THAT may be a game-changer.

[rvjimzhr1]

Last night was #13 off requip. Symptoms same with rls movements from 2230-0600 this morning. The difference today was that I went to bed and slept 0600-0900, to the loo and then back to bed and dozed til 1030. Then, the best part, I fell asleep in my recliner from 1200-1315 and that hasn't happened since withdrawal began. I've had an appt. to see a new doc in May but yesterday they called and got me into today. And I almost slept thru the appt....that would not have been good! I liked this doc from the moment he introduced himself and shook my hand. He listens, asks lots of questions, listens some more and I left feeling optimistic. I have a rx for Lyrica starting at 50MG tonight. My fingers are crossed. We talked about my ferritin level which tested yesterday at 135. Since I've been dealing with bronchitis and respiratory 'stuff' for the past month or so he wants to retest and insure that that number is sustained.

Holland, did you see my private message?

Jim

[stjohnh]

Jim, missed your PM. I responded but I find using the PM menus confusing, so let me know if you didn't get it.

[rvjimzhr1]

Holland I found your reply and just sent you another. Thanks! I don't mind if we do it here but just thought it might be more appropriate in private....your choice.

Jim

[legsbestill]

Sounds like you are really getting there now, Jim. Fingers crossed that things will start to improve progressively from now and that Lyrica works well for you.

[rvjimzhr1]

That's encouraging Legs! When I left the neurologist with the new rx I was excited. It's now middle of the night and nothing's changed with the 50mg dose. In fact, unless it's my imagination, my legs seem a little worse tonight. I got absolutely no drowsiness from the Lyrica. The doc said if no improvement with the first dose then I can bump it up to 100mg tomorrow night. After that I need to allow 2 days before I bump up. The max he want me to use is 250mg. When I told him I was withdrawing from Requip he told me he would have used the Lyrica to help with the withdrawals. So we'll see.

Jim

[legsbestill]

Hmmm! I suspect you would struggle to find many for whom Lyrica provided appreciable relief during the immediate post-augmentation dopamine agonist withdrawal period.

It does work well for many once symptoms settle down but generally at a considerably higher dose. To put that in context, the dose range mentioned in Clinical Management of RLS (Lee, Buchfuhrer, Allen and Hening) is 100-900mg up to 3xdaily. So don't despair if 50 or even 100 mg doesn't make much impact - it may be that you need a higher dose. Having said that, it can take a little while to get used to Lyrica and its potential side effects (although again it varies considerably from individual to individual) and that may be why your consultant wants you to stop at a relatively low dose for now.

Unfortunately, there is also a large-ish cohort for whom Lyrica alone will not suffice but even then it can work well in conjunction with other drugs. It is definitely the one to try after augmentation on a d/a.

[legsbestill]

Sorry, I should have been completely clear; it is necessary to titrate upwards gently and your neurologist is quite correct in recommending a slow build up.

[rvjimzhr1]

Thanks Legs for your comments! I took the first 50mg dose at 2030 last night, not sleepy but tried to sleep from 2200. At 2300 the leg movements began and I tried to wait it out but got up at 2330. AS I mentioned in last post, it seemed that movements were worse but they also disappeared about 0400 so I sat back in the recliner. Fell asleep, got up at 0430 and went to bed....slept 'til 0815. So last night wasn't perfect but I am now getting a little more sleep and I suspect that 50mg of Lyrica was a large part of it. Looking forward to taking 100mg tonight.

Jim

[legsbestill]

Wow; that really sounds like a big improvement on previous nights. Fingers crossed for tonight for you.

[stjohnh]

Jim sent me the following and I thought others might be interested.
"Holland, I'm curious how old you are? How long you've taken the daily Cialis? If you have used the "other" Cialis can you compare the two and is the daily as effective for ED? Where do you buy it and how much are you paying? Have you used it only on Mirapex ? Have you experienced reduced effectiveness due to the RLS drugs?

I've used both regular Cialis and Viagra and both have become less and less effective as I've augmented on Requip. Since I also deal with BPH I'm looking to try daily Cialis when I'm completely withdrawn from Requip. I've priced it locally and the cheapest I can find it works out to about $320/month.....pretty steep and I don't think Medicare covers it."

I'm 69. I've been taking daily Cialis for about 2 years. I did use "as needed" Cialis before that, and they are equally effective, but daily is more convenient. I buy it at Costco, costs $360 for 90 tablets or about $120 per month. That price is after my Healthnet Medicare advantage plan picks up the balance. Total cost is $948/90 pills per Costco. Healthnet only covers it if you have both ED and BPH. It also works with Neupro. I haven't tried it wtth Requip. I don't know if it less effective because of the RLS meds, I was taking RLS meds before Cialis. I don't really remember if it was less effective while I was augmenting, I don't remember much of anything about that time, except it was awful and never want to do it again.

[rvjimzhr1]

Thanks Holland for all that info. Big help to me!

Last night was #14 w/o Requip and I upped the Lyrica to 100mg. That was interesting! I took the dose at 2100, ent to the recliner and by 2130 my legs were moving. The difference this time was that the sensation came on slower than normal and, when the movement started I was able to continue reclining and "fight off", for lack of a better word, the need to stand up. By 2200 the movements ceased....that just doesn't happen....and I started dozing.

Filled with optimism I went to bed at 2230 but by 2245 the RLS returned and I was unable to stay in bed. For the next couple of hours I both sat and walked. By this time I was feeling strongly the effects of the Lyrica. I was loaded, like I had smoked MJ. From then on things are a little fuzzy and I don't recall when I did what (next time I'll make my notes, to the extent that I can, at the time and not wait until morning). At some point I went back to the recliner and I went to sleep. Later I got up and went to bed, no clue exactly when, and slept until 0900. I got up, feeling somewhat hungover. It was the same feeling I had years back when I was on Elavil.

Tonight I'll again take 100mg and try it again. I'm guessing that I still have some Requip in my system even after the 2 week withdrawal period.
Things are looking up here!

Jim

[rvjimzhr1]

When I I met my new doc on Tues he said he had two drugs in mind for me, Horizant and Lyrica. He left for a few minutes, returned and said my insurance didn't cover Horizant and, without insurance, the cost would be near $1000/month. He said Lyrica would work just fine and we went from there. I should have asked why he preferred Horizant but I didn't think to do that.

Today I spoke with my supplemental insurance folks and they told me Horizant might be covered if the doc would submit a "prior authorization" request. They also told me that Horizant would actually be about $50/mo. less than the Lyrica.

Any thoughts out there on why the doc might prefer Horizant? Other than the $$ difference, which I DO care about, should I care?

Jim

[Rustsmith]

There are two reasons why you doc might prefer Horizant. The first is that Lyrica has a reputation of a side effect that causes thoughts of suicide. This can occur with any of the alpha-2-delta meds, but Lyrica has the rep of causing this side effect more frequently.

The second is that Horizant is specifically approved for the treatment of RLS.

There is also a third alpha-2-delta med that is used, which is gabapentin. Unlike Lyrica and Horizant, gabapentin is usually sold as a generic, so it is dirt cheap compared to the other two. Horizant's other name is gabapentin enacarbil. The difference between the two is that Horizant was modified to have better adsorption by the intestinal tract. Once in the blood stream, Horizant converts to gabapentin. So, gabapentin is less expensive, but might not be as effective if you have trouble getting as much into your blood stream.