Bad News

For everything and anything else not covered in the other RLS/WED sections.
ViewsAskew
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Posts: 14857
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Bad News

Postby ViewsAskew » Fri Sep 08, 2017 8:28 pm

Good news!

Long ago, when I first joined this board (and several others), I remember seeing posts from a woman who lived in Florida. Her doc had her switch between ropinerole and pramipexole at the FIRST sign of loss of effectiveness. She had done this for years. I always wondered how this worked since they seem quite similar - though they do work on slightly different receptors.

At any rate, seems that switching immediately is the key. Before it gets entrenched. And, even if it is not the true beginning of augmentation, nothing really lost by switching.

If I could get, say, 3-4 months of good coverage by using the two together, then spend a week or two using only methadone, then back to together, that seems pretty darn good. When I first started switching - back in 2007 - I switched ever day. Then every other. I originally thought to switch more frequently to ensure I did not augment. I am less afraid now. If it happens before the arbitrary cut off, then I switch. If I make it, great. And, maybe, just maybe, all the switching will prevent tolerance even if I to not stop the methadone completely - using varying amounts may keep my body from expecting the same amount. Just a theory...
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.

debbluebird
Posts: 1702
Joined: Mon May 21, 2012 3:27 pm

Re: Bad News

Postby debbluebird » Sat Sep 09, 2017 8:52 am

I think you might be right. Keep on switching !!!

debbluebird
Posts: 1702
Joined: Mon May 21, 2012 3:27 pm

Re: Bad News

Postby debbluebird » Mon Oct 16, 2017 8:58 am

Our doctor stood up to the doctor who controls our clinic. She told him, if he were to stop her from prescribing opioid across the board, it would be a mistake. She told him that she had patients, who were funuctioning fairly well, caring for themselves, etc. She told him, that one would end up in bed, needing care (my husband) and the other one in worse shape or dead (me). Neither one would be able to function on their own.
What a relief. She told my husband that she would continue to help us until the feds stopped her.

Rustsmith
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Location: Pueblo, Colorado

Re: Bad News

Postby Rustsmith » Mon Oct 16, 2017 12:52 pm

That is great news. If only we had more doctors like yours with the backbone to stand up to the administrators and policy makers who are trying to tell them how to handle their patients!
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.

ViewsAskew
Moderator
Posts: 14857
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Bad News

Postby ViewsAskew » Mon Oct 16, 2017 3:11 pm

Thank goodness some docs are willing to do what yours did!
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.

Polar Bear
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Location: N. Ireland

Re: Bad News

Postby Polar Bear » Mon Oct 16, 2017 6:58 pm

That's how we want our doctors to give support !!
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

debbluebird
Posts: 1702
Joined: Mon May 21, 2012 3:27 pm

Re: Bad News

Postby debbluebird » Wed Oct 18, 2017 3:55 am

Yes, she is good. She doesn't totally understand my legs, but is willing.


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