Whew!! Prescription refilled

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Joanie60
Posts: 197
Joined: Thu Mar 15, 2012 2:48 pm

Whew!! Prescription refilled

Post by Joanie60 »

Happy Weekend everyone!

I think I posted my "freak out" of last month when my doc sent an email message saying: I know methadone has been working well for you for the last year, but we need to switch over to an FDA-approved med. So how about you start on Lyrica (which in the past gave me chest pain and very strange, although not suicidal, thoughts) and wean off methadone.

Once my husband scraped me off the ceiling, I wrote back and politely said, why don't you live in my shoes for 24 hours. No, I didn't really. :mrgreen: But I told her Lyrica did not work for me in the past and could we discuss at my next appointment.

This doc "inherited" me from another doc in the practice last year. She has been filling the methadone script every month like clockwork, until this bizarre message. Before my appointment, she apparently reviewed my chart and discovered I had been on every on-label and off-label med known to man (except benzos, I am not going there). She agreed that methadone is the best choice for me and I didn't even have to mount an argument. She did tell me they are under incredible federal AND state pressure to get patients off the opiates. I heard (I'm not saying she said this!!) that she is not going to be able to START patients on opiates. Maybe I misunderstood, but I am pretty certain that is what she said. Current patients are ok, and can continue, but the hammer is being lowered. I asked if I should start a "stash" and she said "we are not there YET" (emphasis mine). Well, I already have a stash and will continue to "fund" it haha.

I am well aware of the opiate crisis happening. Don't even get me started about the Governor of Maine (as I have several close friends who are clean and sober and only alive because of Narcan). But I am afraid the pendulum is swinging back so far in the other direction that many of us are poised to get knocked over by it.

I bring this up to encourage anyone on the cusp of switching to opiates to get a move on. Better to try it now, while it can be prescribed for you and you can be "grandfathered in" if it does work for you.

I am not sure what we, non-professionals, can do. I wrote a letter a couple years ago to someone..Congress, FDA??..as requested by the RLS Foundation. If anyone out there has any further ideas, please let me know. We (RLS community) are not the only ones who may be sacrificed (unnecessarily) on the altar of the addiction crisis. Frustrating. Selfishly, I am relieved that I have a respite for now.

Joanie

Rustsmith
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Re: Whew!! Prescription refilled

Post by Rustsmith »

Joanie, I had a somewhat similar experience earlier this month. I had a valid prescription from my doctor that I took to my local pharmacy. This store had filled my methadone prescription last month with no problem. This time around, my doctor had adjusted the dosage on my prescription so that I could get enough pills to tide me over until my next appointment in June. The pharmacist flat out refused to fill the script. They said that if they filled a prescription that large it would get them "tagged", whatever that means. Fortunately there was enough time left on the prescription for me to send it in to my mail order pharmacy. I guess that since they are a very large national pharmacy, they were not as concerned with attracting attention. Since I am just getting started on methadone, this turned out great in the long run because now I have a very substantial stash.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

Joanie60
Posts: 197
Joined: Thu Mar 15, 2012 2:48 pm

Re: Whew!! Prescription refilled

Post by Joanie60 »

My script says 1 1/2 pills (10 mg each) per day. That's 45 (10mg) pills per month. My doc writes "dispense 60 pills" each and every time~ I have no idea why. Sometimes my insurance will pay for 45, sometimes 51, and I finally discovered if I pay out of pocket, I can get all 60 of them. Out of pocket used to be $10, now it is all the way up to $32 haha. So I build a 15 pill stash each month. It does come in handy, I was in Germany for 2 weeks this month and didn't have to get the script early. When I was on percocet, I was in Germany for over two months and it almost took an act of Congress to get a three month supply (including paying my health insurance premium two months in advance). So while I will NOT go over 15mg per day (except on transatlatic flights), I do like having a stash for future travels.

I was told at my appointment that, at least in Maryland, my doc is once again allowed to mail scripts for methadone. Weird..they are cracking down on prescribing it, but reversed the "pick up in person only" policy and are allowing them to mail the scripts. Maybe by June your doc will be able to mail them monthly??

Despite all my whining, I am SO damn grateful to have the relief that opiates bring to me. It allows me to work, travel, and sleep. I am phenomenally blessed. I do get break-thru symptoms most days but a quick trip to this forum smacks me back to an attitude of gratitude!!

Joanie

ViewsAskew
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Re: Whew!! Prescription refilled

Post by ViewsAskew »

My wake up call was about 3-4 years ago when the pharmacy (that had filled my script for 2 years) all of the sudden refused. They said they knew of no research that proved opioids were helpful and since it was off-label, they refused to fill it.

I truly thought that if a doctor prescribed something, I was safe. But, as some of us have found out, not so.

I actually did round up the research I knew about and handed it to the pharmacist. They filled it after that and haven't said anything since. But, my stash (totally emptied the last time a doc fired me and it took me 3 weeks to get to California to get more) has been rebuilt to cover me for at least a couple months.

The pendulum is indeed in the middle of the swing to the far other side. I imagine it's going to be a few years before it hits the far side completely, though, and will get worse before it gets better.
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: United Kingdom

Re: Whew!! Prescription refilled

Post by Polar Bear »

Views, I remember that awful time.... when the pharmacist wouldn't fill your script.
I'm unaware here in UK of such a thing .....at least 'i think' that once a doctor writes a script the pharmacist will always fill the order.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Sojourner
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Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Re: Whew!! Prescription refilled

Post by Sojourner »

A little off topic here but…. Short story….. My primary, who has been treating my RLS successfully for about 9 years, recently sent me for a consultation with a new local neuro who among other things treats RLS. My primary made the referral with the the hopes of perhaps someone being able to do a better job for me as I (we) had hit kind of a rough patch lately with respects to treatment (but had worked through it). OK, I'm getting to the short story part. Anyway, during the consultation the neuro talked about treatment and the fact that opiods were an effective part of the treatment for RLS. I was pleased/relieved to hear this as part of my current regimine includes hydrocodone. Here's the good part. He then goes on to say that he does not prescribe opiods and if I wanted to continue on them my primary would have to prescribe them. Needless to say, I'm confused. :?


Wishing all who visit here some peace this night
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Joanie60
Posts: 197
Joined: Thu Mar 15, 2012 2:48 pm

Re: Whew!! Prescription refilled

Post by Joanie60 »

Wow. A neuro who won't prescribe them but a primary who will (thank heavens for a terrific primary you have)!!

Perhaps a touch of insight...my neuro said they are battling an image issue, believe it or not. She said they are being "talked about" (by other docs I surmised from the context) for prescribing suboxone and methadone. It is the damn off-label problem. All the money Big Pharma makes/hordes/spends on campaigns/etc and they haven't funded RLS-Opiate studies hahaha.

I actually understand her point. It hasn't yet stopped her, nor has the Federal/State crackdown, but damn. Wish the other docs would mind their own business and their own specialties, and let MY doc & I decide what is best for me.

Thanks Sojourner for the good wishes. It was a nice thing to read while I do a little bit of thrashing in the middle of the night :roll: :roll:

stjohnh
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Location: Palo Alto, California

Re: Whew!! Prescription refilled

Post by stjohnh »

Sojourner wrote: .....Here's the good part. He then goes on to say that he does not prescribe opiods and if I wanted to continue on them my primary would have to prescribe them. Needless to say, I'm confused. :?


Joanie60 wrote:Wow. A neuro who won't prescribe them but a primary who will (thank heavens for a terrific primary you have)!


I'm a retired primary MD and the pattern you described above is actually fairly common. That is, I would send a patient to a specialty MD for consultation. If the specialty doc didn't think regular follow-up by him was necessary he might make a recommendation for a medication change to be followed up and continued by the primary. This actually makes sense if you assume that the primary will be seeing the patient on a regular basis but the specialty doc is anticipating seeing the patient once a year or only if some unusual problem arises. Makes sense if you consider what the general definition of a "consultant" is.

I've actually been surprised that most of the neurologists & sleep specialists mentioned on these forums seem to be prescribing medications themselves, rather than having the primary do the refills and dosage adjustments.
Blessings,
Holland

Joanie60
Posts: 197
Joined: Thu Mar 15, 2012 2:48 pm

Re: Whew!! Prescription refilled

Post by Joanie60 »

That is an interesting perspective, and I guess the idea behind having a "primary" doc. I know, many years ago when my primary diagnosed me with RLS she said the only med she felt comfortable prescribing was Ambien or something like that. She said she would/could not prescribe the Ropinerole but that a neuro would.

Polar Bear
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Re: Whew!! Prescription refilled

Post by Polar Bear »

Here in UK, my experience is that we may be referred and see a consultant but often care is then reverted back to the GP.
This may be following some treatment, or indeed just followng a consultation and opinion.

Whatever the situation it is the GP who will prescribe the medication (possibly following instruction from the consultant).

As we receive 'free' healthcare and 'free' medication - I believe this may have something to do with whose budget will cover the cost of medication i.e. the budget of the consultant at the hospital, or the budget of the GP Practice.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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Rustsmith
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Re: Whew!! Prescription refilled

Post by Rustsmith »

The concept of a GP with consultations from specialists sounds logical and probably works in most cases. The following are two cases where the idea breaks down.
1. As I have stated in other threads, my wife has had MS for almost 50 yrs now. Over the years she has seen a variety of GPs due to moves associated with my job changes. She has also seen a large number of specialists both for her MS and the treatment of MS associated complications. One of her GPs was instructed to change one of her medications. He wrote the new prescription, but apparently did not know enough about the new med to properly instruct her how to make the change. Long story short - I spent a long night in the ER as she was treated for an overdose. Once the ER doc had her stabilized the doctor admitted that they almost lost her. Fortunately I was able to identify the fact that she had taken an overdose and got her to the ER in time. I shudder to think about the fact that I was traveling 25% if the time then. If I had been on the road that day, ...
2. When I contacted the clinic where my current GP works, I was told to send in a copy of all medications that I take so that they could determine whether I would be allowed to become a patient. They accepted me. During my first visit they confirmed my guess that they would not be allowed to write prescriptions for any form of narcotic to treat my refractory RLS. But, they were happy to provide me a referral to the state medical school. The doctor at the medical school agreed to prescribe the medication that I need, but I can forget about going back to my GP for maintaining that prescription. I expect that I will be making regular trips to Denver for many years to come.

So, I see a couple of problems here. One is the issue that the GP may be asked to treat something that is beyond his/her experience. If the condition is under control, then great. But it may be beyond the ability of either the patient or the GP to detect gradual or incremental changes with some conditions that regular visits to a specialist would identify. The other issue is simply one of knowing when the GP is being asked for something that is beyond his/her capabilities. A good doctor should be able to identify these situations and act accordingly. Unfortunately, we have all seen doctors who cannot or will not admit it when caught in these situations.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Whew!! Prescription refilled

Post by stjohnh »

Steve has pointed out a couple of problems with the specialist/consultant/adviser with a primary as prescriber. This is where caring, competent MDs with enough time to do their job makes a big difference. In the ideal situation, the primary personally knows the consultant, and they work together. If the consultant knows the primary is weak in some areas, the consultant is *supposed* to discuss with the primary the option of either: the specialist sees the patient more frequently, or educates the primary doc on problem areas. This requires time, sensitivity, and a humble approach to the ART of medicine. As probably everyone that posts on these boards knows, not to many docs have all that is required for optimal care.
Blessings,
Holland

Rustsmith
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Re: Whew!! Prescription refilled

Post by Rustsmith »

I agree with Holland's points about how things should work in a doctor/patient/consultant relationship. My former GP (a really good doctor) was the ringleader who brought down a large clinic because he refused to restrict his appointment time with patients who needed a bit more care. He also refused to steer his patients in need of specialists to the clinic's specialists when there was another specialist in the area who was better suited to treat his patient. The business office fired him and the rest of the GP's walked out with him.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

Joanie60
Posts: 197
Joined: Thu Mar 15, 2012 2:48 pm

Re: Whew!! Prescription refilled

Post by Joanie60 »

I think Holland also nailed it with "This is where caring, competent MDs with enough time to do their job makes a big difference.". My primary left her original practice because her boss/partner required her to see 8 patients an hour. Really??? Now, she works 3 1/2 day a week but leaves her cell number on voice mail. She has a great balance of family and work (which I totally respect), does not hesitate to have her new office-mate see her patients, and actually treats me as a whole person, not one presenting symptom/problem. So she won't prescribe opiates for me...no worries. She will call me on a Saturday to see how I am feeling if she knows I am sick.

On a side note, when I presented with overwhelming symptoms of depression about 5 years ago (and, of course, didn't realize what was going on), she gave me one month supply of anti-depressant and said she would refill it...as soon as I had a therapist!! Yay!! Well, I didn't say yay at the time, but she was totally on point. That is what I needed :-)

badnights
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Re: Whew!! Prescription refilled

Post by badnights »

I feel so lucky when I read about other people's issues with their doctors. I've had a few, but these days I'm treated very well. The government-run clinic here has a lot of young GPs who work half-time, and stay with their kids or whatnot the rest of the time. They tend to be very willing to spend time with patients, maybe because of that schedule.

My current GP knew nothing about WED/RLS but had a lot of experience with opioids (for pain, mostly, I assume). She listens with real compassion. She has learned a lot about WED since we started together. She made a note somewhere so that I always get double-time appointments - even though I say "for follow-up" when I book, they always say "oh, I see you get 30-minute appointments". I didn't ask for that, but I sure do sppreciate it. She never, ever makes me feel rushed, and I marvel at that particular skill.

She refers me to a specialist in the nearest large city once every couple of years whether I need it or not. And she does the prescribing. It has always been the GP who does the prescribing, except when I was seeing an internist who was based in town here. The other specialists have all been based in a different city, so there needs to be a local doctor prescribing.

Prior to my current GP, I had one who was not comfortable with treating me, so she dropped me and recommended I see the one I currently see.I was offended at the time, but it was for the better.

I have a few horror stories behind me, but my current care is nothing I can complain about. If only I didn't feel locked to this place because of it! Can't have everyting I guess.
Beth - Wishing you a restful sleep tonight
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