Augmentation again (of course)

Use this forum to discuss any issues associated with Augmentation
oceanwalker
Posts: 119
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Augmentation again (of course)

Postby oceanwalker » Fri Mar 08, 2019 11:47 pm

Yes; I am back I had been reading many posts I appreciate them all ! Thank you!
I have a new doc again Last doc left OK I have been augmenting for about 1 month I know I need to remove the Ropinirole and cold turkey it
The new doc is great but I am informing her about RLS I gave her plenty of reading material etc. Been on 3xo.25 Ropinirole's for a long whlile Then upped it ... and upped it The max this doc states is 8X0.25/day I advised her about Augmentation... not sure if she totally understands? She's a wonderful doc though. She does not want me taking more than 8x0.25 Ropinirole's / day I have been doing this So I guess that's 2 mg/day ? hope I am correct She has just added 100/25MG Levodopa/Carbidopa - to take (01) one per day on top of my Ropinerole We chatted a bit about other meds but she insists this is the way to go. I had not tried the Levodopa/Carbidopa yet
Anyways ...I am sorta OK on the 8X0.25 Ropiniroles per day It's tough but hmm Right now is not a good time for me to stop them...in a month it will be OK Does this sound OK to everyone here?? I dunno I can do this for another month It's difficult but doable Seems to me I need to get right off of them ?
It's been a tough few months But I suppose it will be more difficult later (in a month)
As well seems all the docs here are *not in the loop* with RLS Plus some of the specialists didn't know much either in neighbouring cities etc.
Please may I have some advise ?? And Thank You so so very much [I try to go to the gym each and everyday I sleep hmm bout 2.5 hours a night usually 2am to 4am (in that range) Of course I fall asleep for 10 to 20 min in the early evening from exhaustion Been doing this for a few years.

Sincerely,
Oceanwalker aka Marie

ViewsAskew
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Location: Los Angeles

Re: Augmentation again (of course)

Postby ViewsAskew » Sat Mar 09, 2019 12:24 am

Hi Oceanwalker - sorry you are back for this reason - but nice to see you again!

I would not take the Sinemet - carbidopa/levadopa. It is almost guaranteed to make things worse because you are augmented. I had the worst 36 hours of my RLS life when augmented and my doc had me do the same. They believe at least 70 percent (and some doctors say 100% ) of people taking C/L augment. Because it is so high, it is never recommended for other than a short term solution, say for traveling. But, when already augmented?

Some docs do like to switch you to a different DA when augmented, feeling that it will buy you some more time before you also augment on that. If she'd switched you to pramipexole, say, that would be a better option. Other docs feel that once augmented, you should simply stop the DAs. No easy answer.
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: 119
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Sat Mar 09, 2019 12:54 am

Hello Views:) Nice to hear from you as well!!
Thank You for your reply !
I did ask about the Mirapex.. but she didn't think this would help / work ?
Oh well Yes; I will see

Again.....thank you !!! So appreciate your reply

Sincerely,
Ocean aka Marie

oceanwalker
Posts: 119
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Sat Mar 09, 2019 1:22 am

Thank you again for the Warm Welcome :) Back !!

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

Re: Augmentation again (of course)

Postby stjohnh » Sat Mar 09, 2019 3:43 am

Marie,

Ropinirole at 2mg a day is a very high dose. Current recommendations are that for RLS the max is only 0.5mg. Also, don't take the Levodopa/Carbidopa, bad news in this situation.

You say you are doing ok, but that is hard to believe on only 2.5 hours sleep a night.

While it is true that some people augment for months or even years before getting off the dopamine agonist (ropinirole), there is some evidence that augmentation causes permanent damage to your brain, longer spells of augmentation do that more. I don't think you should wait to get off the ropinirole.

I hope your new doctor learns quickly, from your description, she has a lot to learn.
Blessings,
Holland

oceanwalker
Posts: 119
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Sat Mar 09, 2019 5:44 am

Hello StJohn and Thank you so much for your reply
Yes I guess so 0.25 / 7 to 8 X per day (each tablet)
it's too much
Well you and many others are prolly correct No time to cut down or out like now
It's a difficult time But I understand
I have not taken and will not take any Sinemet
Thank You for all your help ! Honestly.. it's been a while since I had to educate a doctor about RLS But must give it the my best shot.
Sincerely,
Ocean Marie

Polar Bear
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Re: Augmentation again (of course)

Postby Polar Bear » Sat Mar 09, 2019 4:30 pm

Marie, as I read your original post my first thought was.... don't touch the Sinemet.

You are now on 2mg ropinerole daily, as am I. (I've brought mine down from 5mg). My GP Prescribed Pregabaline/Lyrica to help with my reduction and so far I''ve done ok - more or less, whether by good fortune or the Pregabalin, who knows.

You've mentioned 'cold turkey' and I'll watch with interest if you do decide on the cold turkey.
Personally, I'm of a mind to continue to taper. With commitments I'd find it difficult to have a time frame for cold turkey.

Just a thought, but have you had your Serum Ferritin checked recently?
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

oceanwalker
Posts: 119
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Sat Mar 09, 2019 4:51 pm

Good AM Polar Bear and thanks for this information
I did have my ferritin tested I cannot find the sheet which explains the outcome
However she did say it was Good
But unfortunately, I don't remember where this sheet is to see the actual numbers
Will keep searching !
Thanks and Great Point!

stjohnh
Posts: 908
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Augmentation again (of course)

Postby stjohnh » Sat Mar 09, 2019 5:48 pm

oceanwalker wrote:I did have my ferritin tested I cannot find the sheet which explains the outcome
However she did say it was Good


Marie,
RLS is due to low brain iron (Brain Iron Deficiency, BID). There is a protective barrier between the brain and the blood called the Blood Brain Barrier. It's purpose is to keep bad stuff in the blood from getting into the brain. People with RLS have defective transport of iron from the blood to the brain. What this means is that the Ferritin Test, which tests the amount of iron in the BLOOD, is of almost no help in determining the amount of iron in the BRAIN. Some people can get their brain iron up some with oral iron, mostly those are folks with very low ferritin (less than 20). However there is evidence that some people with a ferritin between 20 and 75 can help their RLS symptoms with oral iron tablets. There is more evidence that many people can improve their brain iron (and reduce their RLS misery) by getting IV iron.

The importance of all this is:
1. All, or nearly all, people with RLS have BID (Brain Iron Deficiency), regardless of what the ferritin result is. Remember, ferritin tests blood iron, not brain iron.
2. If your ferritin is less than 20, there is a fairly good chance oral iron will help RLS symptoms.
3. If your ferritin is between 20 and 75, there is a slight chance that oral iron will help. There is a good chance IV Iron Infusions will help.

Most labs list a normal ferritin as anything between about 20 and about 500. But this only tells a doctor that there is normal blood iron. Most doctors do not know this unfortunately, so that may be part of educating your doctor.
Blessings,
Holland

oceanwalker
Posts: 119
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Sat Mar 09, 2019 6:20 pm

Thank you so very much for this information Holland !
In the past ( a few years ago with another doctor who is no longer here ) I had a few infusions of both Iron and I believe Magnesium

Am still looking for my Iron Information Sheet from the Hospital Lab

Sincerely,
Marie aka Oceanwalker
I appreciate all the information !!

oceanwalker
Posts: 119
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Sun Mar 10, 2019 11:01 pm

Just a note Here in BC Canada we just cannot change/switch doctors
We go to one and stick with that particular one
I do have a good doc just need to bring her more and more info re: RLS
Past doc himself suffered himself from some bouts of RLS so he was more educated in the matter

Like many here I been to several docs neurologists etc and rarely did one have RLS info
Of course I did bring a lot of info with me to the appts etc

thanks for all your help
Marie aka Ocean

oceanwalker
Posts: 119
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Tue Mar 12, 2019 12:05 am

OK I found the info sheet with the breakdown of my *IRON Lab Report


Test Name RESULTS Flag Reference UNITS
Iron 14 10-30 umol/L
Iron Binding
Capacity 73 45-75 umol/L

Iron Saturation 0.19 0.14-0.50

Is this ok?

Thanks Marie / Oceanwalker

ViewsAskew
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Location: Los Angeles

Re: Augmentation again (of course)

Postby ViewsAskew » Tue Mar 12, 2019 8:53 am

This is pretty typical - the doctor did not test your serum ferritin (happened to me, too, even after I said that is what I needed). That is the one you need.
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: 119
Joined: Fri Aug 23, 2013 12:02 pm
Location: Canada

Re: Augmentation again (of course)

Postby oceanwalker » Tue Mar 12, 2019 9:34 am

Thank you then Ann
I ask her for the Serum Ferritin?

OK I will make an appt for this
and let you know

Many thanks
Marie

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

Re: Augmentation again (of course)

Postby ViewsAskew » Wed Mar 13, 2019 8:18 am

oceanwalker wrote:Thank you then Ann
I ask her for the Serum Ferritin?

OK I will make an appt for this
and let you know

Many thanks
Marie


I am pretty sleepy, so I could get this wrong...Dr B always order the serum ferritin and I think....the transferrin. But I am not positive. I will try to remember to look tomorrow.
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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