Need help for mom

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Polar Bear
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Location: N. Ireland

Re: Need help for mom

Postby Polar Bear » Fri Aug 01, 2014 2:57 pm

I've got the pain in the butt bones, can't sit comfortably, in my case it is osteoarthritis in the lumbar back.
This is what doc and xrays come up with although to me it really feels like pain right in the hip joints which in turn scoots down the leg.
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

T Brenner
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Joined: Wed Dec 18, 2013 8:18 pm

Re: Need help for mom

Postby T Brenner » Tue May 07, 2019 9:14 pm

Hi All,
It is now 2019 an update on my mom. She has been on Methadone since May of 2014. The good is the RLS is gone or controlled and hiding. The bad the Methadone makes her very very sleepy, her teeth are not good and if she is late on a dose she is frantic.
She has had another knee partial replacement 2 years ago in which she had 2 seizures coming out of surgery. She has recovered from that slower and dizzy all the time. Probably due to the seizures. Anyway I just wanted to give you my input. I have not read through these blogs for a couple years and will do that now. I think the big part of her problem is she just wants to check out.

T Brenner
Posts: 8
Joined: Wed Dec 18, 2013 8:18 pm

Re: Need help for mom

Postby T Brenner » Tue May 07, 2019 9:17 pm

... her doctor, in Montana, is now going to slowly take her off the Methadone and try something else. I am not sure what. I will meet with him when I go to Montana next week. I want to make sure he knows something about RLS.

Thanks,
Tammy

Rustsmith
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Location: Pueblo, Colorado

Re: Need help for mom

Postby Rustsmith » Tue May 07, 2019 10:28 pm

Tammy, you might want to print out a copy of this paper, just in case. Better to have it an take it home with you than to need it and not have it if the doctors says that (s)he wants to try something other than an opioid.

https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/fulltext
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.

T Brenner
Posts: 8
Joined: Wed Dec 18, 2013 8:18 pm

Re: Need help for mom

Postby T Brenner » Fri May 10, 2019 8:11 pm

Thanks so much! I will

badnights
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Re: Need help for mom

Postby badnights » Tue May 14, 2019 5:58 am

I hope this doctor is concerned about her daytime sleepiness and not about opioid prescribing consequences. I can't see a non-opioid med working for her, although getting off the methadone with its long half-life would probably be good.
, o
The doctor might suggest the rotigotine patch. Rotigotine is a DA, like pramipexole. She has augmented horribly on levo-carb and quite possibly the pramipexole too, so DAs should be out of the question for long-term daily treatment. There has not been enough research on that, though, so some doctors might insist she try rotigotine. That would be unfortunate, she would have to keep an eye out for returning symptoms and get to the doctor about it right away.

If the doctor suggests any other dopamine med, she/he knows nothing about severe refractory WED/RLS and should not be trusted with decisions that will affect her life - unless she/he is willing to learn.

Anti-convulsants don't seem to cut it for people who have augmented, so if she/he suggests gabapentin, Lyrica/pregabalin, or Horizant as a monotherapy, that also is a bad sign. The most reasonable option for her would be a different opioid, one with a shorter half-life, like extended-release hydromorphone or oxycodone.

I was also wondering if her current methadone dose might be too high. You said she was first given it the same night she was taken off levo-carb, when she would have been augmented and would have needed much more methadone than after the withdrawal was complete. You said she was taking 1 to 3 pills daily back then; if she's still taking that same amount, it might be excessive.

Anyway, those are just some things to keep in mind, and remember to have that paper about opioid treatment for WED/RLS in hand when you go. Read it beforehand to give yourself the confidence you might need to talk about these things. I hope you are taken care of just as well if you should need help when you're your mom's age.
Beth - Wishing you a restful sleep tonight
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