Augmentation on Neupro vs augmentation on pramixepole

Use this forum to discuss any issues associated with Augmentation
Bridgercan
Posts: 18
Joined: Sat Jun 23, 2018 6:43 pm

Augmentation on Neupro vs augmentation on pramixepole

Postby Bridgercan » Wed Jun 05, 2019 5:50 am

Hey All—I’m curious if anyone has been through augmentation on Neupro patch? And if so, have you been through augmentation on pramixepole? I fear I’m headed that direction with the patch. My doctor at Mayo/MN has upped my dose recently from 3mg to 4mg as I was having moderate symptoms. There was about a two week period on the higher dose with little to no symptoms. Now I’m having symptoms either waking after an hour or two of sleep or keeping me up until 4 or 5am. After which, I have only a series of fitful naps until it’s time to get up for work.

A year ago I went through augmentation and under doctor’s “care” went cold turkey from pramixepole after 12 successful years on it. As many of you know, it is agony writhing for hours on end, and dawn brought no relief. The sleep specialist I was going to at the time put me 20mg OxyContin ER and 600mg Horizonte ER. As those barely contained my symptoms, I turned to kratom, taking 3-4g after dinner. I was good and drugged but still had symptoms breaking through the opioid fog.

Late last fall, I finally got in to see a neuro sleep specialist/researcher at Mayo/MN. She kept me on the Horziant and put me on the patch, starting at 2mg. No joy. Went up to the 3mg patch and that worked nicely. I was able to slowly taper down the Oxy to 2.5mg and quit taking kratom. A few weeks of peace and decent sleep went by. Then my symptoms began to inch back up. Back up to 5-7.5mg Oxy to dampen the creepy-crawlies. Much better for a couple of weeks. Then symptoms returned and with it, very fractured sleep. So she upped my patch to 4mg. Same pattern repeats, and now symptoms are back.

Self-diagnosing here, I’d say I’m drifting into augmentation because:

1) Creep-crawlies are happening for longer and longer periods
2) Sensations have spread from legs to arms and torso
3) Sensations are now happening anytime of day or night if I get just a bit drowsy
4) Pattern of increased dosage helps for a few weeks, then symptoms return necessitating a higher dose.

I emailed my Mayo doctor today with all this. I dread augmenting again and withdrawal from a DA...

A side note, I did do a course of iron IV last August; my serum ferritin was 1 point below the cutoff for IV supplementation. Disappointingly, there were absolutely no changes in symptoms or disease presentation.

If indeed I’m on course to augmented, i’d sure love any tips on coping!

stjohnh
Posts: 857
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Augmentation on Neupro vs augmentation on pramixepole

Postby stjohnh » Wed Jun 05, 2019 1:46 pm

Bridgercan,

Sounds like you have it spot on... Yes you are almost certainly augmenting. I augmented on pramipexole and switched for a month or two to Neupro and had to stop because of rashes. But augmentation on Neupro is very common, especially after augmenting on pramipexole.

Coping... LOL, there is no coping. You will need to get off the Neupro and switch to a different treatment - traditionally alpha 2 delta ligands (gabapentin, Lyrica, Horizant) or opioids. For most people with more than mild RLS alpha 2 delta ligands don't provide sufficient relief on their own to be effective as a single drug treatment. Both the gabapentin group and opioid group of meds, while effective, have significant downsides as well.

A better approach is IV Iron:

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

Rustsmith
Moderator
Posts: 3959
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Augmentation on Neupro vs augmentation on pramixepole

Postby Rustsmith » Wed Jun 05, 2019 2:08 pm

Bridgercan, the symptoms that you describe are exactly those of augmentation.

You asked if anyone had augmented on Neupro, I did after using it for 15 months and gradually going from 2mg to 4mg a day. My history is that it took me 12 months to augment on pramipexole and then another 15 on Neupro. I was also taking gabapentin at that time for migraine prevention. Circumstances were such that I had to switch back to a high dose of pramipexole for six months before I could finally switch to an opioid. The opioid resolved all my augmentation symptoms immediately and I have been on one every since.
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.

Bridgercan
Posts: 18
Joined: Sat Jun 23, 2018 6:43 pm

Re: Augmentation on Neupro vs augmentation on pramixepole

Postby Bridgercan » Wed Jun 05, 2019 4:18 pm

stjohnh wrote:Bridgercan,

Sounds like you have it spot on... Yes you are almost certainly augmenting. I augmented on pramipexole and switched for a month or two to Neupro and had to stop because of rashes. But augmentation on Neupro is very common, especially after augmenting on pramipexole.

Coping... LOL, there is no coping. You will need to get off the Neupro and switch to a different treatment - traditionally alpha 2 delta ligands (gabapentin, Lyrica, Horizant) or opioids. For most people with more than mild RLS alpha 2 delta ligands don't provide sufficient relief on their own to be effective as a single drug treatment. Both the gabapentin group and opioid group of meds, while effective, have significant downsides as well.

A better approach is IV Iron:

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub


Thanks, Holland, for the link!

Bridgercan
Posts: 18
Joined: Sat Jun 23, 2018 6:43 pm

Re: Augmentation on Neupro vs augmentation on pramixepole

Postby Bridgercan » Wed Jun 05, 2019 4:30 pm

Rustsmith wrote:Bridgercan, the symptoms that you describe are exactly those of augmentation.

You asked if anyone had augmented on Neupro, I did after using it for 15 months and gradually going from 2mg to 4mg a day. My history is that it took me 12 months to augment on pramipexole and then another 15 on Neupro. I was also taking gabapentin at that time for migraine prevention. Circumstances were such that I had to switch back to a high dose of pramipexole for six months before I could finally switch to an opioid. The opioid resolved all my augmentation symptoms immediately and I have been on one every since.


Thanks, Rustsmith, for replying! Good to get feedback from the community as my spouse doesn’t want to hear me utter the A-word. Our lives were turned upside down when I went through it last year, so skeptical attitude is understandable.

Had to increase my Oxy dose last night by 50% to get some sleep. Waiting to hear back from my Mayo doc...

ViewsAskew
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Posts: 15646
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Augmentation on Neupro vs augmentation on pramixepole

Postby ViewsAskew » Wed Jun 05, 2019 5:27 pm

Bridgercan wrote:
Rustsmith wrote:Bridgercan, the symptoms that you describe are exactly those of augmentation.

You asked if anyone had augmented on Neupro, I did after using it for 15 months and gradually going from 2mg to 4mg a day. My history is that it took me 12 months to augment on pramipexole and then another 15 on Neupro. I was also taking gabapentin at that time for migraine prevention. Circumstances were such that I had to switch back to a high dose of pramipexole for six months before I could finally switch to an opioid. The opioid resolved all my augmentation symptoms immediately and I have been on one every since.


Thanks, Rustsmith, for replying! Good to get feedback from the community as my spouse doesn’t want to hear me utter the A-word. Our lives were turned upside down when I went through it last year, so skeptical attitude is understandable.

Had to increase my Oxy dose last night by 50% to get some sleep. Waiting to hear back from my Mayo doc...


My spouse also never wants to hear that word again! I have flirted with it a few times, always immediately stopping the DA, but I have a unique situation and enough other meds to do so. Definitely wise to bring it up as soon as you feel those symptoms! Even if you are wrong, it is much easier to go through a short time of nastiness when you stop it than the weeks or months it can be, as you are aware!
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.

Bridgercan
Posts: 18
Joined: Sat Jun 23, 2018 6:43 pm

Re: Augmentation on Neupro vs augmentation on pramixepole

Postby Bridgercan » Thu Jun 06, 2019 5:47 am

Appreciate the moral support, ViewsAskew!

2BassetMom
Posts: 166
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Augmentation on Neupro vs augmentation on pramixepole

Postby 2BassetMom » Wed Jun 12, 2019 7:37 am

As much as I hate to admit it I think I'm augmenting on the Neupro Patch. I augmented on the other DA's and Neupro was the last chance. I currently am on 1 mg having come down from 2. I also take oxycodone 7.5 and that helps relieve the symptoms. I have found that OxyContin CR 10mg does very little to relieve symptoms. I have printed off the sleep/symptom diary from the RLS Foundation website and will keep track of what is going on for the next 2 weeks and then contact my specialist. It seems like my symptoms are returning to pre-med level. I have been on Neupro for about 18 months.

ViewsAskew
Moderator
Posts: 15646
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Augmentation on Neupro vs augmentation on pramixepole

Postby ViewsAskew » Wed Jun 12, 2019 7:59 am

2BassetMom wrote:As much as I hate to admit it I think I'm augmenting on the Neupro Patch. I augmented on the other DA's and Neupro was the last chance. I currently am on 1 mg having come down from 2. I also take oxycodone 7.5 and that helps relieve the symptoms. I have found that OxyContin CR 10mg does very little to relieve symptoms. I have printed off the sleep/symptom diary from the RLS Foundation website and will keep track of what is going on for the next 2 weeks and then contact my specialist. It seems like my symptoms are returning to pre-med level. I have been on Neupro for about 18 months.


So sorry to hear that!
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.


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