Using Neupro 3 months AFTER mirapex augmentation

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Icantsleep
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Using Neupro 3 months AFTER mirapex augmentation

Postby Icantsleep » Fri Nov 22, 2019 1:20 am

So It has been suggested by my neurologist to try the neupro patch and monitor closely for augmentation.
He is aware I have recently gone through augmentation and then severe rebound with mirapex after using it for 13 years

I may have begun my augmenting with mirapex at 0.1875mg x 2 a couple years ago .
I for sure augmented in early August after 2 days going up to .25mg x 2 with extreme rls in areas never before experienced.

I have been mirapex free for nearly 3 months , but current temporary fix involving tramadol / THC / clonazepam / codeine either doesnt cover rls symptoms or gives me adverse effects (or both)

I have a few concerns with the patch :

The lowest dose of neupro is 1mg , which seems to be the equivalent of .25mg mirapex given a 4:1 ratio.

Is this not too high a dose to introduce to someone who has previously augmented with a dopamine agonist ?

Can I cut the patch ?
I'd like to start at 0.5mg , then if necessary go up to 1mg to see what that dose reveals.

What if I have symptoms at the introductory dose of 1mg ( do I increase to 2mg patch to see if I augment at that dose then discontinue, and go through rebound all over again ??)

Would I be better off reintroducing mirapex at 0.0625mg instead ??

Am I doomed to augment on the patch either way ???

I only have symptoms at night , no PLMD
I am attempting to put off using a strong opioid for at least a while (who knows how I would tolerate it)

I have 2 very young girls that need me to be a parent in a least some capacity , so the less meds possible while covering symptoms remains the ultimate goal .

Rustsmith
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Re: Using Neupro 3 months AFTER mirapex augmentation

Postby Rustsmith » Fri Nov 22, 2019 2:05 am

I went directly from Mirapex to Neupro when I first augmented on Mirapex. I was taking 0.5mg Mirapex and simply switched to the 1mg patch. When I did, the augmentation symptoms that I had been experiencing on Mirapex disappeared. The two are not exactly comparable because of the time release nature of the patch. Where you get a jolt of medication when you take a Mirapex pill that then declines over time until you take the next one, the patch provides an almost steady supply of DA over the 24hrs that you have that patch on. This means that the up and down levels of DA with pills (Mirapex or Requip) require a higher initial peak so that the low point before the next dose is not too low.

Can you cut the patch? Yes, but be VERY careful and wash your hands thoroughly after handling the patch since you cannot get the med in your eyes. The danger of getting it on your fingers is greater if you cut the patch. Cutting the patch is something that some who use the 4mg patch do, simply because the patch is so big that it can be difficult to find a flat spot on your body that is large enough.

For the dose, use the smallest dose that you can that manages your symptoms. If you can get away with half of a 1mg patch, then great. But you will probably quickly ramp up to 2mg. Try to stay there because eventually you will go to 3mg. After that, you will need to start thinking about alternatives because 3mg is the largest dose that should be routinely used for RLS. I used maybe one box of 4mg patches while waiting to see my RLS specialist (long wait times for appointments).

Would you be better off reintroducing Mirapex? NO. You will very rapidly augment again if you go back to Mirapex. The patch's time release properties are thought to be a decent next step following augmentation on Mirapex or Requip. When first introduced, the specialists thought that augmentation might not occur with the patch. They quickly found out that it does, but it allows more time before other options (like opioids) need to be considered. My experience was that I augmented on Mirapex in 12 months. I lasted on Neupro for another 15 months. Since you got 13 yrs out of Mirapex, you could very well get a similar long run out of Neupro.

For most people, the primary problem with the patch is skin irritation. I was able to get by with a series of 14 different application sites on my body. That gave enough time for my skin to recover before using that spot again.

One sidelight for me was that two of my application sites were on my arms near my shoulder. This is a site that apparently is also frequently used for the quit-smoking patch. When the patch was visible, I would be asked if I was trying to quit smoking, even by people who knew that I didn't smoke if they had just thought about it. This gave me an opening to educate them a bit about RLS and what our lives are like.
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.

stjohnh
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Re: Using Neupro 3 months AFTER mirapex augmentation

Postby stjohnh » Fri Nov 22, 2019 2:58 pm

I used Neupro for a couple of months after augmenting on Mirapex, and mostly agree with what Steve said. I stopped because the rashes were just too much to cope with.

If you haven't purchased the patches yet, be aware that they are VERY expensive, so either make sure your insurance will cover them, or only get a few patches for the initial prescription. Even better, try to get a few free samples from your doc. You don't want to end up with a bag of patches that you can't use. As Steve said, rashes are very common and may be severe. About 50% of people who try Neupro have to quit because of rashes.

Generally accepted advice to those who have augmented is avoid short acting DAs (regular ropinirole and Mirapex) and instead try long acting DAs (Mirapex ER and Neupro). There are a couple of finer points about this. Still, the number that eventually augment on Neupro is high. I found, and several others on this forum have found that very low dose Mirapex (0.0625mg, 1/2 of the smallest sized tablet) can be used successfully after augmentation if there has been a Mirapex-free spell of at least a couple of weeks, AND the user is careful never to increase the dose.
Blessings,
Holland

Icantsleep
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Re: Using Neupro 3 months AFTER mirapex augmentation

Postby Icantsleep » Sat Nov 30, 2019 11:54 am

Alright so ...

I still havent made a firm decision here
I have the green light to do either one , although at this time I only have the mirapex.
Neupro patch was to be prescribed by my neurologist, but not before he consulted with my sleep specialist.

My sleep specialist is a really hard guy to track down .
They had arranged a meeting over the phone yesterday, but sleep specialist decided he had more important things to do , not even 24 hours after the meeting was arranged.
He is now gone away on vacation.
So at this point , mirapex is my only choice

Here's my real dilemma:

Sure I could add a bit of mirapex at 0.0625mg periodically, but I would need to continue with low dose opioids at the same time (tramadol and a bit of codeine)
... but if I went to the Neupro patch, I imagine I'd be able to reduce or eliminate the codeine and tramadol

I'd love to not have to take tramadol ... it is still fairly hard on me
I'd hate to augment on a DA again ... I'm not sure if cutting a 1mg patch will be an option either

I realize I need to choose the lesser of the 2 evils

I suppose I could just go back to tramadol if I have problems with the patch
.... at least until someone prescribes me a low dose stronger opioid

stjohnh
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Re: Using Neupro 3 months AFTER mirapex augmentation

Postby stjohnh » Sat Nov 30, 2019 3:35 pm

I don't see why you can't take the 0.0625mg Mirapex daily rather than periodically. You then may be able to reduce the Tramadol. I think it is unlikely that you will be able to eliminate the opioids completely, no matter what option you choose.
Blessings,
Holland

ViewsAskew
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Re: Using Neupro 3 months AFTER mirapex augmentation

Postby ViewsAskew » Sat Nov 30, 2019 8:51 pm

stjohnh wrote:I don't see why you can't take the 0.0625mg Mirapex daily rather than periodically. You then may be able to reduce the Tramadol. I think it is unlikely that you will be able to eliminate the opioids completely, no matter what option you choose.


In case you haven't seen what I have done - here is a short synopsis. The take-away is that even after severe, fast, and horrible augmentation, I did (and have continued to off and on - more on than off recently) use a DA. The lower my ferritin, the shorter the time I take it without a break. Initially, with low ferritin (under 30), I took it no more than 2-3 days in a row. Now, after my third infusion and ferritin in the 200-300s, I take it for months at a time.

I started because of issues with opioids. I had to have an alternative as well as reduce the opioids. I originally alternated - that was very difficult. But, it helped.

I also tried the patch - also had skin issues and more recently found it wasn't as effective for me as pramipexole for whatever reason. And, the first time (when I had low ferritin - like in the tens), I felt I was augmenting after about a week, so I stopped it quickly. Also could have been the RLS-like symptoms that occur when you reduce an opioid! Hard to tell apart - after several reductions in opioids, the RLS from opioid withdrawal does feel different, but it is hard to tell apart.
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.

Icantsleep
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Re: Using Neupro 3 months AFTER mirapex augmentation

Postby Icantsleep » Sat Nov 30, 2019 10:40 pm

ViewsAskew wrote:
stjohnh wrote:I don't see why you can't take the 0.0625mg Mirapex daily rather than periodically. You then may be able to reduce the Tramadol. I think it is unlikely that you will be able to eliminate the opioids completely, no matter what option you choose.


In case you haven't seen what I have done - here is a short synopsis. The take-away is that even after severe, fast, and horrible augmentation, I did (and have continued to off and on - more on than off recently) use a DA. The lower my ferritin, the shorter the time I take it without a break. Initially, with low ferritin (under 30), I took it no more than 2-3 days in a row. Now, after my third infusion and ferritin in the 200-300s, I take it for months at a time.

I started because of issues with opioids. I had to have an alternative as well as reduce the opioids. I originally alternated - that was very difficult. But, it helped.

I also tried the patch - also had skin issues and more recently found it wasn't as effective for me as pramipexole for whatever reason. And, the first time (when I had low ferritin - like in the tens), I felt I was augmenting after about a week, so I stopped it quickly. Also could have been the RLS-like symptoms that occur when you reduce an opioid! Hard to tell apart - after several reductions in opioids, the RLS from opioid withdrawal does feel different, but it is hard to tell apart.


I do have abnormally high blood iron ... I do have that going for me ...

Ann do you use a mere 0.0625mg each time, or have you jumped up to .125mg at all ?

Like you I just dont tolerate opioids, at least not yet .
Tramadol is just awful at 50mg or higher and codeine binds me, but much worse affects my breathing .
(Possibly due to upper airway resistance syndrome)

Tramadol is effective in treating rls symptoms, and boy do I feel it when I try to reduce .
My 2 attempts at zero tramadol in a night were very similar to sudden mirapex withdrawal.

I believe my plan tonight will be :

15mg codeine (I've already taken it)

Somewhere between 0.06 and 0.07mg mirapex (I have brand name mirapex 0.25mg that snaps in fairly reliable quarters)

Tramadol 37.5mg (3/4 of a pill) ... a couple draws of sativa right before or right after

If I fall asleep within an hour great , if not a couple draws indica

My entire .75mg clonazepam dose when I wake up, then possibly a couple more draws of indica if I cant get back to sleep

.... and see what that does for me

Icantsleep
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Re: Using Neupro 3 months AFTER mirapex augmentation

Postby Icantsleep » Sun Dec 01, 2019 1:06 am

A quarter of a .25mg mirapex paired with a mere 2 draws of blue dream 30 minutes later, and rls seems so far away , and sleep so close ...


Just took about 2/3 of 50mg tramadol
... feels like I dont need any at all but I had planned to take at least 25mg

Lights out very soon


. Still got rls the moment my mind thought I was about to sleep
(Tramadol hadn't kicked in yet ... and I clearly need it right now)

Icantsleep
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Re: Using Neupro 3 months AFTER mirapex augmentation

Postby Icantsleep » Sun Dec 01, 2019 3:40 pm

So after a couple more draws of indica I fell asleep for a lousy 90 minutes
Ate a banana and took my clonazepam
2 more draws indica and I was asleep within 15 minutes

Slept about 4.5 hours with better quality and no RLS the rest of the night .

Still woke up quite tired and a bit over drugged at 4am
... perhaps the clonazepam wasnt done doing its job.

It's now 6 hours later and I still feel extra "tired"
... I suppose things could have been worse

Unsure what the plan will be tonight ...

ViewsAskew
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Re: Using Neupro 3 months AFTER mirapex augmentation

Postby ViewsAskew » Sun Dec 01, 2019 11:11 pm

Oh, the nights I have had of testing things out...

One thing it may help to keep in mind - I started where you are in about 2005. I have had YEARS of trying just about anything I could think of. Eventually, most of us hit on some combination that works for at least awhile. Then we try again. That is the hardest part, to me, that little seems to work for an extended time - like 5 years or something.

I would definitely try diet - absolutely works for some people. Not all, but enough to be worth it.

You may have dependence on the tramadol (happened to me in just a few weeks). I had full blown withdrawal when I stopped it quickly. And, opioid withdrawal feels hella like augmentation.

I figure that if it took you X time to augment, you have at LEAST half that time available without an issue. So, say you augmented in 1 year - you could likely take the DA again for at least 6 months without augmentation. Then, take a break - say 2 weeks (I am not sure how long you need - the longer you take it the longer the break, I would guess, but I am NOT a doctor!) then take it again. That is what I have been doing for a long time. I know that augmentation was tied to my ferritin level. Now that it is high, I have pushed it to 6 months without an issue (I augmented in about a week when my ferritin was low).

When augmented, I was taking about .75 mg pramipexole. I started at .125.

When I took it pre-infusion (ferritin around 30-50), I needed .25 mg of pramipexole WITH 20 mg of methadone. When I would take a break from methadone, I needed about .40 to .50 mg pramipexole. When I would take a break from the pramipexole, I needed 25-35 mg of methadone. This was MUCH too high given the side effects - for both of them.

Post-infusion, I take about .125 pramipexole with 12.5 methadone.

I don't think how much I took/take really matters in the sense that my RLS, PLMD and body are likely very different from yours. It's more the idea of splitting you meds in some form so that you minimize the side effects of the drug(s) that are causing issues AND that you take some sort of break (based on how long it took you to augment) regularly.
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.

Icantsleep
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Location: Ottawa Canada

Re: Using Neupro 3 months AFTER mirapex augmentation

Postby Icantsleep » Mon Dec 02, 2019 8:35 pm

ViewsAskew wrote:Oh, the nights I have had of testing things out...

One thing it may help to keep in mind - I started where you are in about 2005. I have had YEARS of trying just about anything I could think of. Eventually, most of us hit on some combination that works for at least awhile. Then we try again. That is the hardest part, to me, that little seems to work for an extended time - like 5 years or something.

I would definitely try diet - absolutely works for some people. Not all, but enough to be worth it.

You may have dependence on the tramadol (happened to me in just a few weeks). I had full blown withdrawal when I stopped it quickly. And, opioid withdrawal feels hella like augmentation.

I figure that if it took you X time to augment, you have at LEAST half that time available without an issue. So, say you augmented in 1 year - you could likely take the DA again for at least 6 months without augmentation. Then, take a break - say 2 weeks (I am not sure how long you need - the longer you take it the longer the break, I would guess, but I am NOT a doctor!) then take it again. That is what I have been doing for a long time. I know that augmentation was tied to my ferritin level. Now that it is high, I have pushed it to 6 months without an issue (I augmented in about a week when my ferritin was low).

When augmented, I was taking about .75 mg pramipexole. I started at .125.

When I took it pre-infusion (ferritin around 30-50), I needed .25 mg of pramipexole WITH 20 mg of methadone. When I would take a break from methadone, I needed about .40 to .50 mg pramipexole. When I would take a break from the pramipexole, I needed 25-35 mg of methadone. This was MUCH too high given the side effects - for both of them.

Post-infusion, I take about .125 pramipexole with 12.5 methadone.

I don't think how much I took/take really matters in the sense that my RLS, PLMD and body are likely very different from yours. It's more the idea of splitting you meds in some form so that you minimize the side effects of the drug(s) that are causing issues AND that you take some sort of break (based on how long it took you to augment) regularly.


So taking into consideration my iron is sky high, and it took a good 10 years to augment, you believe a combination of mirapex 0.0625mg with about 25mg tramadol (37.5mg is easily enough last couple days ) with properly timed 0.75mg clonazepam (I'd love to get it to 0.5mg) and very sparingly administered high THC will keep me from augmenting for .... years ?

(I also aspire to eliminate the early evening 15mg of codeine. I've already got it down to 7.5mg .
I think the mirapex cocktail covers me overnight and through the day until next dose , at least for now )

I shouldn't take breaks every few days at the beginning like you did ?

Holland thinks I can take it every day no problem as long as I'm taking a splash of tramadol

(Dont worry .... I'm not going to hunt either of you down if this doesn't work lol )

Oh ... I had ZERO rls last night and overnight and into this afternoon
I just hope its sustainable !!!

Icantsleep
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Re: Using Neupro 3 months AFTER mirapex augmentation

Postby Icantsleep » Tue Dec 03, 2019 3:09 am

I think I may have been thinking out loud here ...

I'm not trying to make it sound like I want a guarantee or something

It feels strange to take this mirapex considering what I just went through but I hope I can make it work again

Icantsleep
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Re: Using Neupro 3 months AFTER mirapex augmentation

Postby Icantsleep » Tue Dec 03, 2019 6:15 pm

Might as well update this again
.... maybe I'll start a new thread as I've gone the mirapex route instead of the patch

I still have not had ANY rls in nearly 3 days

I did 7.5 mg codeine 3pm
0.0625mg mirapex 7pm
2 draws sativa 745pm
Tramadol 25mg 830pm
3 draws indica 915pm
Attempt sleep 930pm

I felt stressed going to bed .... my wife and mother are taking care of my 2 very sick young daughters

Not sure why , but likely due to reductions in codeine/tramadol, I woke up twice in a panic before 1145pm .
I was quite sedated , so didn't reach for clonazepam right away, but 0.75mg at 1230am was what I needed to calm down .
I didnt fall back asleep until perhaps 3am after 2 more draws indica
I then slept 3 hours
... I also feel that tramadol side effect of discomfort in my lower abdomen.

I guess I plan to do the same tonight to not rush reducing tramadol
I'd love to eliminate it completely, but then take what ?

Also ... I'm still concerned about taking mirapex EVERY night

Icantsleep
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Re: Using Neupro 3 months AFTER mirapex augmentation

Postby Icantsleep » Wed Dec 04, 2019 10:31 pm

So I did the same thing last night pretty much , except I took clonazepam later
I attribute my 3am rls to this
It was mild but woke me up and kept me up for maybe 30 minutes
I took no other medication and fell back asleep

No waking up in a panic , but when I woke up again at 530am , I was a bit upset and concerned I only got 2 nights of no RLS with my resumption of mirapex .

I plan on doing the same tonight , but may take .375 or even .5 of clonazepam with my lights out indica , so its covered by the mirapex and tramadol

I'll see what that does

Icantsleep
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Re: Using Neupro 3 months AFTER mirapex augmentation

Postby Icantsleep » Thu Dec 05, 2019 9:09 pm

I had mild rls in my left hip at 2am that woke me up .
I got back to sleep 60 minutes later after some half asleep stretching and .375mg clonazepam and strong indica.
(I took the other .375mg earlier at lights out)

... I also had mild rls disturb me this afternoon as I lay with my sick daughter
I had experienced both rare morning and afternoon rls in the few days before resuming mirapex , so I cant attribute this to rapid augmentation quite yet (this was only day 5 of mirapex 0.0625mg)

Going to try to take the mirapex/tramadol/clonazepam a bit closer together for better coverage tonight .
No dose change planned


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