This is partially a vent and partially asking for advice and info, so stick with me here.
I had my PM appointment today (I go once every 3 months). For the past year and a half, I have been at the same dose of a long-acting med with a short-acting med for breakthrough 3 times a day.
Today, the PA informed me that they have a new policy that they are no longer prescribing breakthrough meds to ANY patients.
She explained that their policy change had to do with the FDA saying that breakthrough meds are bad and keep long-acting meds from working properly. She also noted concern about tylenol and my liver (my BT med has 325mg of acetaminophen in it, so 3x325mg every day if I max it out).
I was shocked. I asked her if I did anything wrong (I know I didn't do anything expressly forbidden by my contract, and I've never even entered any "gray areas" there) and she said, "NONONONONO, we're doing this with ALL of our patients."
As if this policy change wasn't nasty enough, there's something else! I'm on Medicaid, and in order for Medicaid patients to have their long-acting med increased and paid for by Medicaid, they have to be taking a certain mg/day dosage of BREAKTHROUGH MEDS! So, not only are they taking away BT meds, but they're making it impossible for Medicaid patients to increase their base med dosage if needed.
They are THE ONLY pain management place around, period. My options are to stick it out with a doctor who originally wasn't afraid to treat a 20-something-year-old with a rare medical condition with narcotics but is now taking some away, or press my luck trying to find another doc to take over all RXing (and then playing the game of How Long Can I Trust You?).
I'm...flabbergasted and hurt and feeling deceived. I guess I just want some opinions about what you think is happening here. I feel like I'm being taken advantage of, but they could be totally right.
I've been going there since December of 2008, so it's hard to fathom going elsewhere, but...I dunno...and...then it could happen again...or they could change their policy back (fat chance, I know). GAAAAAH!
Could you try a non narcotic (say ibuprofen 800mg) for breakthrough - there isnt much difference in eficiency between this and the milder narcotics used for BT pain
It might also be worthwhile putting down on paper your concerns re not being able to increase the dose of LA meds if you arnt taking BT meds because of medicaid rules, your doctor might not have considered this.
If she is worried about the acetaminophen, there are BT meds that dont contain it (though 1000mg of acetaminophen per day poses almost no risk at all, even if taken for decades)
The desire to take medicines is what seperates man from the lower animals - William Ostler
I've been through the whole gamut of non-narcotic breakthrough meds. Ibuprofen makes me bleed from places I'm not supposed to bleed from even at small doses.
What I'm looking for now is any information that either proves or disproves what they told me about breakthrough meds making long-acting meds not work.
I know that breakthrough meds can be prescribed without acetaminophen. Also, when I first started at this PM clinic, I expressed a concern my mom (and me, too) had over daily acetaminophen usage, and the doctor called her a worry wart!
If they were instituting a new policy, it would have been nice to receive some notification in the mail prior to having the bombshell dropped on me at my appointment. It seems strange to me that nobody showed me this policy in writing at any point.
I am a highly intelligent patient and self-advocate, and every fiber of my being tells me that I'm being lied to. I think that perhaps someone was too lax in either their prescribing practices or monitoring techniques and now they're blaming a "new policy" on the FDA. I don't like being lied to, and I don't like it when innocent patients have to pay for things someone else did.
Honestly I've never heard of what your doctor is telling you, and I too am a highly intelligent, well-educated individual. But basically you have 3 choices, 1)you can go to your doctor and say to him exactly what you just said to us, and most likely get dismissed from his care, or 2)you can look for a new doctor, or 3)you can learn to live with the new rules. Because whether we want to believe it or not they do have the power over us. They can say whatever they want is policy in their office and there's not much you as a patient can do about it. It sucks, but unfortunately that's the jist of it.
I'm sorry you're having to go through this. Have you written a letter to your doctor informing him/her of the problems this is going to cause with your medicaid and future LA med dosage increases? As one other poster suggested, she/he may not be informed of this Rule and that might have some bearing on your case.
I have a fantastic pain management physician in a great PM practice here. They continue to be of the opinion that long acting, with break through medications, is a good plan IF it works for the patient. I do reasonably well with MS Contin but 1-3x/day I need the Percocet when perhaps I've overdone an activity or sudden pain and occurred. And that's what break through medications are for. So it makes sense that I need a "boost" every once in a while or I'd have to increase my long acting MS Contin to a level where I was taking a ton! I like to leave that level low and use the break through for the occasional boost.
I havent seen, heard or read anything that suggests use of breakthrough meds makes LA meds ineffective - indeed, that is the regimen recomended by most pain management societies the world over.
perhaps you need to make an appointment to discuss this with the doctor, rather than a nurse or PA, this is a fairly major change in your care, and it'd be nice to get it from the organ grinder rather than the moneky
The desire to take medicines is what seperates man from the lower animals - William Ostler
i echo what the others have posted-i take opana 40mg 2 a day and i must say without the boost i sometimes need from my bt percocet 10/325 i would really suffer needlessly;i find they really help me during those tough in between times and cant imagine my doctor leaving me in a spot like that
Oddyssey- Wow, I am so sorry they are doing this to you. I can see where you are feeling suprised, hurt, saddened and confused. I tell you, the FDA is really making things near about impossible for us pm'ers ya know?
I've kind of brushed through the other responses because I'm in a hurry and have to leave, but I did want to respond before I head out the door.
I personally haven't heard a thing about this new, "breakthrough meds cause the LA meds to not be effective", so I won't even venture to guess whether or not your doctor is being totally honest.
It could be that because of all the hubbub with the FDA, your doctor has become leary of prescribing short acting meds for breakthrough pain, therefore decided the best way to handle it with the patients is to push it off on the FDA. By doing this, they don't look like the bad guy.
I honestly do not want to alarm you, but I have to tell you my experience with a former pm doctor of mine pulling something like this. I had been on the same meds for over 2 years and had never once asked for or even hinted about an increase. I was just thankful to finally have some relief. I also never broke a single rule of our contract, never called for early appointments or did any of the other things that might would raise any kind of red-flag.
Well, I go to my scheduled appointment and the PA told me that the practice had been doing "research" and had found compelling evidence that opioid pain meds actually cause more/increased pain. YES- the dreaded "Opioid Induced Hyperalgesia". I thought that was very odd because at my second appointment, the doctor himself told me that I never had to worry about him pulling the "Opioid Induced Hyperalgesia" card out because it was a bunch of "bunk".
I was given my regular scripts, but was also told that in the near future, I need to prepare myself to be taken off all opioid meds and be switched to several other meds. The PA told me some of the meds they were planning on putting me on, and I was extremely upset because it would mean I'd be taking about 7 different meds rather than the three I was taking. Actually, I was taking only two different meds a day because the third med was taken on an as-needed basis.
Anyway- to make the long story short, about 3 days before my next appointment I got a call from the PM doctor's office. His nurse told me that he wasn't going to be in the office for my scheduled appointment, and that the PA wasn't going to be in either, so I asked when they were able to reschedule me and also asked if I needed to come in and pick up handwritten scrips since I had no refills on my meds. The nurse got really nervous and hesitantly told me that there would be no scrips and that at this time, they are unable to schedule any future appointments. She briefly explained to me that the doctor was in some trouble and that I shouldn't worry because it would all be settled soon and then they would call back to schedule my next appointment. Yeah, right! I got a letter in the mail not too long after that saying that the office is closed and that all patients need to call & make arrangements to get copies of their medical records from them. It also had a list of doctors to call so we could try to continue to be treated.
Well, NONE of the doctors on the list were willing to accept any of this doctor's patients. I found out why a couple days later because my former doctor was on the news. He was not in minor trouble at all, and ended up losing his license for something like 2 years. When/IF he ever gets his license back, he will never be allowed to prescribe any kind of narcotic meds again for any reason, and will not be allowed to treat any chronic pain patients either.
I'm not saying that your doctor is in any kind of trouble, but after I got that letter in the mail & saw the news story, I did some research with the state medical board and was able to see each and every charge he was facing. It was aweful because it wasn't just one thing, but litterally pages and pages of charges for over 20 people, some of whom actually died while under his care because of overdoses. I was never prescribed huge amounts of meds from him personally, but some of his patients were taking 9-10 different meds at the same time.
Having said all that, I honestly feel like your doctor is just becoming gun-shy and doesn't want to admit it to his patients. It's much easier to let the FDA look like the bad guy. I mean, we are all aware of just how many problems they are causing these days, and how difficult they have already made things for us.
I know the prospect of looking for another doctor is not a good one, especially since yours is the only one around, so maybe it would be best to try and stick it out with him and see if maybe things change for the better. I hate that you have been put in this postion- especially because of the medicaid rules on increased meds & having to be taking a certain amount of BT meds.
I wish I had sound advice to give you, but instead I can only let you know I'm thinking about you & am sending positive thoughts your way.
The following user gives a hug of support to ozzybug:
Thank you. Thank you for your replies, your shared experiences, and your advice (even though I know it's hard to really give concrete advice in this type of situation).
I have a strange sense of calm, like everything will work out ok, despite my increased pain level and having no doctor to fall back on (yet).
I think the only way I'd bring up their untruths to their faces is if I had another doc to fall back on, already lined up. So, if I got dismissed for standing up for myself (which nobody should ever get dismissed for), I'd have another doctor there to pick me up and take over.
From the research I'm doing, I've only found that, as of 2011, the practice I've been going to has been getting some pretty hideous reviews - patients stating they were made to feel like drug addicts and that they were being lied to. Not cool! Scary, even!
Everything in me feels like I'm going to wind up elsewhere. I do not know where. I just have to know for myself that it will be a better fit.
For now, I'll stick it out while doing research on both what's true and what's not, as well as possible other doctors/solutions. I'd rather have SOME pain relief (my long-acting morphine, lowest dose, never increased after almost 3 years) than NONE.
Thanks again. I know the patients are being wronged here, and it infuriates me that we have to pay for...whatever is going on here. It's also criminal that we can't feel secure in standing up for ourselves without the fear of being dismissed from all care - I do not want my next stop to be a hospital for detox, so I know I have to be careful with how to proceed.
The following user gives a hug of support to Odesse:
I just thought I'd give you all an update on what's been going on.
I have been doing more research, actually contacting the FDA as well as other governmental and pain support organizations, and I now know that the doctor's office is lying to me. There is no evidence anywhere that breakthrough pain medications keep long-acting medications from working, and there certainly is no FDA ban on all breakthrough medications either now or down the pipeline.
I'm keeping a pain diary (oh how I hate doing pain diaries, but if it helps...) and am trying to figure out what to do next. It's wrong for the doctor's office to lie to their patients, but there's also the question of WHY they feel the need to lie. I know I can't be accusatory and have no plans of doing so, but *sigh* I've always been the person to stand up for what's right. In this case, however, that could cost me everything, so I'm not as keen to do it.
So, that's that. I'm treading water, unsure of what to do. As for going elsewhere, my next closest option would be Knoxville, which is a little far, but actually closer than I thought it was. I feel guilty and wrong going elsewhere, though, because I specifically sought out this PMD for his knowledge and experience with people who have the rare disorder I have, and he was kind enough to see me for free twice when he was at a previous practice. I don't want to be a bad patient, but I want to get my pain treated properly.
I'm glad that you got your curiosity settled, but I'm honestly shocked that you ever believed that in the first place. There were several people here on the board that told you it was all a bunch of bunk. I don't know why your doctors office is doing this, because surely they don't think that all of their patients are stupid and can't figure out that they're lieing rather quickly. As for you feeling guilty and wrong, why in the world would you? Look at the way these people treated you, I'd be outta there in a heartbeat.
i'm a little suspicious you are being told what they told you because of the kind of insurance you have-i could be wrong but i have noticed alot of docs are 'shying' away from patients with your ins coverage; esp pm doctors-my dr has a big sign on his office entrance that says they are NOT providers for Mcaid-since you are already an established pt i would call and state what you are being told by your pm office-it would be interesting to hear what they have to say about it