Treatment for Refractory RLS at Quality Care Clinics

For everything and anything else not covered in the other RLS/WED sections.
PLR111
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Joined: Fri Jul 21, 2017 4:32 pm

Treatment for Refractory RLS at Quality Care Clinics

Postby PLR111 » Tue Jan 16, 2018 4:06 pm

Can't believe no one can answer my question. I live in Oklahoma and have been through 10 Physicians over a number of years taking all protocol meds for RLS with no results. In Oklahoma the word opiates is forsaken. I made an appt with a Dr. In Dallas, TX that was on RLS. ORG list. He actually called me back personally after reading my interview from nurse and told me if in the future opiates were necessary he could not prescribe over state lines. I'm very thankful he saved me the trip. So the question not even anyone at RLS. Org. can answer is If I go to an out of state Quality care clinic would they be able to prescribe opiods if needed? How many people are scheduling appointments to one of these care centers that will find out they wasted money and vacation time not mentioning grief not knowing this? I called Vanderbilt and Mayo. They ask the nurse and she says yes.? Or they take my number and nobody calls back. Is it that they aren't sure? Please someone with the know or who can find someone who knows pass a viable answer on to the WHOLE RLS community!

ViewsAskew
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Location: Chicago

Re: Treatment for Refractory RLS at Quality Care Clinics

Postby ViewsAskew » Tue Jan 16, 2018 6:23 pm

My guess is that there are many factors at play - and most of them not in your or my favor! I guess is that it is decided individually at the clinics or is covered by state law, which the Foundation would have no way of knowing. We know, from our members here, that most of the places that used to prescribe them as long as refractory RLS was present, have been pressured by their institutions to stop. We know that many of the doctors go through hell to prescribe them. I also am guessing that few places want this information known to the whole world because it opens them up to scrutiny no one wants in this day and age.

I can say that - at least in the past - the docs at Johns Hopkins continued to prescribe. That said, we do know that the JH docs were pressured to stop prescribing to new patients. I am not sure what ended up happening. Maybe other patients there would know.

Dr Buchfurher has continued to prescribe; in the past, he did annual screenings to ensure patients were not abusing any other drugs, too. I would guess he still will if warranted.
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.

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

Re: Treatment for Refractory RLS at Quality Care Clinics

Postby Rustsmith » Tue Jan 16, 2018 7:34 pm

Last wee I spoke with a long time patient of Dr Earley at Hopkins. I was told that as of about Feb 1, Dr Earley said that they will only be allowed to give out prescriptions for five days of methadone. I'm not certain, but it appears that this is a new Maryland state law. This particular patient had to drive a couple of hours to Baltimore, and so was interested in my experience with marijuana since the District of Columbia was closer.
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.

PLR111
Posts: 2
Joined: Fri Jul 21, 2017 4:32 pm

Re: Treatment for Refractory RLS at Quality Care Clinics

Postby PLR111 » Tue Jan 16, 2018 9:22 pm

Thanks for your prompt responses. I have a feeling this is or will soon be a huge issue in the RLS community. I'm soon to be an Advocate for RLS with our elected representatives so I will use this feedback for the good of RLS sufferers. I'm still working on Vanderbilt to put me in touch with whomever is close to the Quality Care labeling of their facility. I do have an April appointment, so I need to know.

Rustsmith
Moderator
Posts: 3332
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Treatment for Refractory RLS at Quality Care Clinics

Postby Rustsmith » Tue Jan 16, 2018 11:49 pm

I'm soon to be an Advocate for RLS with our elected representatives so I will use this feedback for the good of RLS sufferers.


Thanks for joining the Advocacy program. For others, becoming an advocate is very easy and does not take much of your time at all. They provide you with the basis for a letter and all you have to do is write about a paragraph or so about how the opioid crisis is causing problems for the treatment of your RLS. Stories such as PLR111's are especially valuable to them.

To get started, simply read through the info at https://www.rls.org/get-involved/advocacy and then send Peter an email to let him know that you want to help out. You don't need to go to Washington to become involved, you don't need to spend money on postage and you don't even need to know the names of your congressmen. They take care of all of that for you.
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.


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