Augmentation again (of course)

Use this forum to discuss any issues associated with Augmentation
oceanwalker
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Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Sat Mar 23, 2019 12:12 am

Ann and Betty and Everyone who answered my posts...thank you so much !!

All I can do is wait until I see my doc

I can assure everyone that I would NEVER be put on methadone!

Always had been able to get off the Da's on my own...difficult but doable (all in time )

I never took this much Ropinirole Always used the Mirapex before and I would have to go back in my *Discussion Board here* to view the amounts

Oceanwalker


Marie

badnights
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Re: Augmentation again (of course)

Postby badnights » Fri Apr 19, 2019 6:47 am

oceanwalker wrote:going on a mild opiod for a bit for help in withdrawing from the Ropinirole ..they just would not do this here in Canada with what's going on with opiod addiction etc.
Didn't notice this thread earlier - sorry! It is certainly possible to get a regular prescription of opioids in Canada but from place to place it differs depending on what kind of doctors you have available. I live in the NWT, pretty remote, yet my regular GP here specializes in opioid medications; and she refers me now and again to a specialist in Edmonton, who has no compunctions about recommending opioid prescriptions to referring doctors.

Most doctors are not well-informed about WED/RLS, though. You might want to print off the latest Medical Bulletin that the Foundation puts out (see the link in my signature block), and highlight the relevant parts, then bring it to your next appointment. First be sure to describe how your symptoms are impacting your life, because we tend to assume a doctor will know, but most don't. Tell him/her you're too tired to do your job properly, that you can't accept invitations to social engagements because you're too tired all the time, that you can't sit still in meetings and it's affecting your boss's view of you - whatever is true for you. Then - after describing the impact - say you need a better solution, make clear he/she knows that's your desired outcome from this visit. Then give him the printout and tell him you understand that the publishers are one of the most trusted sources of information on RLS/WED - and could he please look at page whatever.

I hope this advice is completely unnecessary because you have, in the long time it took me to see your comments, gotten past the augmentation and withdrawal :) I hope
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.

oceanwalker
Posts: 121
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Fri Apr 19, 2019 4:57 pm

Hello Beth and many thanks for all your important information !!!

I will look over all of this !!
...will get back to you

Sincerely,
Oceanwalker (Marie)

oceanwalker
Posts: 121
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Thu Jun 13, 2019 11:29 pm

Well ( *sighs ) back to the long haul of coming off the Ropinirole
Went down to 4/day of 0.25 All seemed OK and then after a long while..poof it became worse again :(
I didn't want to but I did go back to 5/day of 0.25
It's been a Horror Show but I guess this happens on occasion
No doc listens to me and I don't know what to do
I have a few (not enough) Emtec to carry me through this process but not going to work

Going back to the doc when I can get it

But I was on 8/day of 0.25

Take care !
Marie

ViewsAskew
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Re: Augmentation again (of course)

Postby ViewsAskew » Fri Jun 14, 2019 4:58 am

oceanwalker wrote:Well ( *sighs ) back to the long haul of coming off the Ropinirole
Went down to 4/day of 0.25 All seemed OK and then after a long while..poof it became worse again :(
I didn't want to but I did go back to 5/day of 0.25
It's been a Horror Show but I guess this happens on occasion
No doc listens to me and I don't know what to do
I have a few (not enough) Emtec to carry me through this process but not going to work

Going back to the doc when I can get it

But I was on 8/day of 0.25

Take care !
Marie


:cry: :cry: :cry:
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.

oceanwalker
Posts: 121
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Fri Jun 14, 2019 8:05 am

Hi again
Here's a breakdown of my Hematology panel
Hemoglobin 129, ( Iron 17) Iron Binding (73) Iron Saturation (0.23) Ferritin (59) Am I missing anything ? [could have shared this before?]

Thanks ! for all of your help Marie Oceanwalker

badnights
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Re: Augmentation again (of course)

Postby badnights » Mon Jul 01, 2019 6:03 pm

Are you taking iron? You ought to qualify for infusions, but I know firsthand how hard it can be to convince doctors. The consensus guidelines (available in my signature link) say iron infusions can be regarded as an appropriate first-line treatment for people whose ferritin is under 100. I bet you would be able to come off the ropinirole easier with infusions. But even taking oral iron, if you're not, might help. And doing everything you can to amend your diet - ditch added sugars and highly processed foods, and add lots of vegetables and healthy fats to ensure you have the nutrients you need.

I think also you need to accept that it is not going to be easy and believe it is going to be worth it. Believe it hard enough to suffer, and hard enough to find a different doctor to suffer with.
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.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Augmentation again (of course)

Postby badnights » Mon Jul 01, 2019 6:06 pm

I should say congratulations, too, Marie! You've come down a lot.
Are you following Betty's story? (polar bear). She's doing the same thing as you right now.
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.

oceanwalker
Posts: 121
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Mon Jul 01, 2019 6:34 pm

Hi there Badnights:)
Yes; it's a bit less for sure !!
Well I did ask about the infusions of course and she said there's no need cos my iron is ok
I did explain..but hmmm She's an amazing doc but in this dept it's not working to date
I see her next week and hope and Pray things will change

Totally will follow up on Polar Bear's story... I did read some of it though !!!

All the best and thanks:) 8)

badnights
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Re: Augmentation again (of course)

Postby badnights » Mon Jul 01, 2019 9:20 pm

She's an amazing doc but in this dept it's not working to date
She's had a long time with you to learn about WED/RLS and has failed to, so I don't think she's an amazing doc at all :). Maybe it's time to take charge and find a new one!
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.

oceanwalker
Posts: 121
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Mon Jul 08, 2019 6:20 pm

Hello All
Well I just returned from my doc and she showed me the new information about RLS Information she receives
To me it's old news Anyways it was suggested to use the Rotigotine 2 MG / 24hour patch
As well as Carbamazine 200 mg tablets
Just wondered about these 2?
Any input would be helpful
Thank You !!

Oceanwalker (Marie)

oceanwalker
Posts: 121
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Mon Jul 08, 2019 6:23 pm

...........Before I forget I did impress the fact that I am augmenting etc
Have symptoms throughout the day
As well she said the hospital would not allow me to have any ferritin infusions cos my iron is good
But she would send me for Magnesium infusions

Rustsmith
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Re: Augmentation again (of course)

Postby Rustsmith » Mon Jul 08, 2019 8:22 pm

As you probably guessed, the idea of using rotigatine for patients who have been through augmentation is old news and the idea has since been discarded. The original idea of the patch was that getting the DA dose spread throughout the day would avoid the dose cycles you experience when taking a pill one (or more) a day. Nice idea, but it didn't turn out that way. I was put on the patch after augmenting on pramipexole after 12 months. I lasted another 15 months and went from the 2mg patch to the 4mg before I was taken off of it. Hopefully you will get a longer run with it than I did.

As for Carbamazine (aka Tegretol), it is another anti-seizure med that is in the same class as gabapentin, Horizant and Lyrica. According to "Clinical Management of Restless Legs Syndrome", Carbamazine was actually the second medication ever studied for treating RLS. It did well, but later studies all centered on the other meds. So, give it a chance. It is possible that it won't do a lot for your movement issues, but it could be very effective for helping you fall asleep.
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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Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Augmentation again (of course)

Postby stjohnh » Mon Jul 08, 2019 10:20 pm

oceanwalker wrote:...
As well as Carbamazine 200 mg tablets
Just wondered about these 2?
Any input would be helpful
Thank You !!

Oceanwalker (Marie)


Marie, I think I would pass on the carbamazepine. In the US it has two black box warnings for fatal side effects. First is a deadly skin reaction that is much more frequent in people of Asian descent. Second is agranulocytosis, deadly blood reaction that is rare but unpredictable. If no other choices and severe RLS, then go for it.
oceanwalker wrote:...
As well she said the hospital would not allow me to have any ferritin infusions cos my iron is good
But she would send me for Magnesium infusions
Sadly, this is the most common reaction among doctors not specializing in treatment of RLS. Most doctors think that a normal ferritin means you have plenty of iron in your body. It actually means just two things: You have adequate iron in your BLOOD, and you probably have adequate iron in your bone marrow. All other organs have differing requirements for iron. For us, the problem is low BRAIN iron, which cannot be measured by any currently available blood test. Even most hematologists (specialists in blood diseases) don't understand that the ferritin test does not indicate the amount of brain iron.
Blessings,
Holland

ViewsAskew
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Re: Augmentation again (of course)

Postby ViewsAskew » Thu Jul 11, 2019 8:37 pm

I so look forward to the day that I do not see any posts such as this. So sorry, Marie. It is SOOOOOO frustrating when doctors do not "get" it, isn't it? Especially because it is our lives!
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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