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Insight as to what dr was thinking?

SailorCarolineSSailorCaroline Posts: 1
edited 06/11/2012 - 7:52 AM in Pain Medications
Hi Everyone!
This is my first time posting here on the forums, as I just found this site a few days ago while doing internet search after search in hopes of finding some insight/opinions/advice about my predicament. I was impressed by the knowledge and real sense of community amongst your members.

Anywho..here's my situation. Its more or less a question on how to handle different confrontations that may araise in a pain mgnt office, or in particular between dr. and patient--- especially now days, with the recent "war on pain" and what not that has doc's everywhere apprehensive about writing scripts for pain meds.

I'll start with a brief background and then explain what happened this month. ANY opinions, thoughts, advice, anything(!!) is GREATLY appreciated....

So, First of all it's worth mentioning that here in my city, there is only 2 pain mgnt. doc's left. The office I go to is owned by Dr. R who used to specialize in psychology/pain mgnt, but recently Dr. R went under investigation and "lost" his privileges to write narcotic rx's for a few years....so he has retreated to just practicing psychology himself, but hires other dr's to work with his existing clientele of pain mgt patients.
The turnover rate with these new "fill in" doc's is extremely high. I'm assuming of course, one reason is because of the obvious risk that dr's are taking to specialize in pain treatment, but I also theorize that the stress must be tremendous seeing as there are only 2 practices in all of tucson that will see pain patients now. The workload is presumably overwhelming, and you can feel the tension everytime you enter the office.

So I have been going to this same dr's office now for almost two years. Before I started at this office, I was perscribed methadone, and was eager to transition to another narcotic like oxycodone. I hated the methadone side effects, and I was only on it because my last dr had told me it was the safest pain med for pregnancy, and I had just given birth to my daughter, so I was eager to move on. My transitioning plan to did not go without hitch as planned, and I ended up unable to go cold turkey from the methadone, even when substituting with oxycontin. I was still feeling withdrawals and major depression, which my dr called "Psychological m.done w/d's" that are apparently "common" after stoppping methadone(?) So after my first 2 months on only oxycontin /and oxycodone, we switched to a regamine of 30mgs/methadone/day along with 90mgs/oxycodone/day for breakthrough pain.

I have been wanting to wean down on my m.done and switch to oxycodone or on any alternative for that matter....but until a few months ago I hadn't brought it up because I was constantly seeing a new dr each month. I did, however write down my "concerns" each month on a paper that we fill out for our charts. So basicly, even though I hadn't mentioned it, there is months of records in my charts of my desperation to find a balance between pain control and medicine tolerability.

My main concern with the methadone was the debilitating fatigue that it caused me. And as someone who is already a diagnosed narcoleptic, this is the last thing I need.
So, fastforward to a couple months ago....while reading forums , I had stumbled upon a new drug called Nucynta. I didn't know anything about it, except for the fact that it was getting rave reviews from patients, many claiming a new found sense of energy. At my next appointment I asked about it, and was surprised to hear that my doctor responded with "Really? You *want* to try that? I can't even give those away!" and proceeded to explain to me that it is a new type of drug that is supposed to provide the pain relief of a narcotic, without the "high". And that scared most people away. Anywho, I ended up trying it, and it worked decently for pain, but the price was astronomical. (I am uninsured)

So next month.....I inquire about Fetanyl patches. I explain that the thing that I do love about my methadone is it's longevity and wonderful pain controlling abilites, but that the side effects were just too much to handle. I thought fetanyl might be a logical alternative since the patch is worn for a few days, so longevity would be comparable to that of methadone, and as for pain control, from what I had read online fetanyl had a great reputation.
The Nurse Practioner who I was seeing that month discussed the pros and cons with me, and I left with a script for 10 100mcg/hr fetanyl patches (to be changed every 3 days), along with 15mgs of methadone/day (1/2 of my usual dose, so that It would be more of a "weaning" off than abruptly stoping, like I had tried and failed in the past. Just an FYI...the rumors are true....methadone is absolute HELL to get off of, even with the option of other narcs!) and 90 10mg/oxycodone for breakthrough pain.

I left feeling optimistic, but got myfirst disapointment with fetanyl the second I got the the pharmacy and was told that a months supply would b e costing just under $1000. Something I can totally not afford, Luckily My dad helped out this month, but with the cost alone I knew I could not take this again next month. As it turned out, the fetanyl was a total bust in more ways then one, and I even (surprisingly) felt w/d from my higher methadone dose. The fetanyl just did not work out.

So this moth, I go in to see the Nurse Practitioner (same as last month), and after waiting 5 long hours (apparently another dr called in that day so she was taking double the patients) ...and I don't know if it was her stress or what but she was being totally unreasonable. I explained how expensive the fetanyl patches were, and that I'd like to just go back to the methadone/oxycodone that I had been on previousl, *however* I explained how I had felt mild w/d's from the methadone throughout the past month, so since I had gone that far, I wanted to stay on a lower dose of methadone and just substitute with oxycontin.

Now, in months past, It has always been understood that I was working on an unltimate goal of finding a balance between getting the pain control that methadone offered me without the side effects, and that the "Docs and I would work together" to find a happy medium.

But, no. The NP was totally in her own little world or something. When I explained about the fetnyl patches not working out, she just took them off and refused to substituete anything.Then she procedeed to cut my methadone dose down to 20mgs/day and myoxycodone down to 20/mgs a day.

I was dumbfounded, and was telling her that not only was this absured for my pain plan, but that I was psychilally dependant on opiates, and going from my scripts last month, to the drasticly reduced scripts this month would not only hurt me pain wise, but would certainly cause withdrawal, too.

She literally was like "I know you can do it this will be fine". I was dumbfounded. Not only was she apparently not all there, she obviously was oblivious to my chart, to me, or to her job of helping patients find relief. (Another thing, she was so spacy this day that the scripts she did write me, she ended up having to re write 3 times! She just kept making mistakes?)

So myquestion is this. I plan on calling and speaking with the office manager today and explaining my situation to see what I can do. If I can maybe see another doctor, or if maybe she can review my chart to see how irrational the rx shift was? Ugh...it's hard to articulate exactly what I should say. Basicly, I need imput. Does this sound crazy to you? Have you been in this position before? What should I do?

Also, just as a note, I have always drug tested perfectly, never had any problems, and the Nucynta and the fetanyl are the only 2 times I had asked about trying something new. What is your take on the whole situation? I appreciate any responses ;)
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Comments

  • Welcome to Spine Health. It is a shame you have had to endure so much over the last months in your quest to develop a good pain management plan/strategy. I can see where it would be complicated by constantly switching between providers/NP's. Smart that you have made certain to have all of this annotated in your medical records via the patient questionnaire each month.

    If you aren't getting adequate relief or levels to ward off more severe withdrawal, then I would definitely contact someone and raise some concern. Is it possible that the NP is just trying to "help" you get over the hump by drastically reducing your medication? Just a crazy thought there, but one I figured I'd throw into the mix.

    If finances are a big issue for you, is it possible to take a brief overview of your personal finances/expenditures and cost of the different medications with you to your next appointment so you can give the doc or NP you see a better idea of why you keep asking for different medications?

    Hope you get things worked out.

    "C"
  • You really need to see a Dr. to get this sorted out. As much as I respect Nurse Practioner's I think she's under-dosed you and you could go through withdrawal. I would try and get in to see the Dr. Best wishes. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I was switched from Oxycontin to Methadone a couple of years ago because of the high price and the unavailability of generics. I did fine from 80mg of Oxycontin to 30mg Methadone without any withdrawals. My question is, have you been on Methadone for a long time? I also heard that getting off of it was tough.

    I don't think you did anything wrong at your appt; you were always clear and concise about the issues with meds and I think it was just a bad day for the NP. But I would certainly let the doctor know that you feel your pain mgt is inadequate and that you still have withdrawal symptoms.

    Keep in mind that long acting pain meds are very expensive esp. Fentanyl and Oxycontin. Methadone and generic MS Contin are the most affordable ones, and it's a good idea to find a prescription discount card or sign up at Walmart, Costco, etc. I hope this situation works out and that you get your pain under control. take care


  • Going in and seeing someone different each time can get confusing, especially if the person you are seeing is not reviewing your chart properly. There was a lot in your post to address and I'm not going to remember it all, but I can totally relate to the "tension" you say that is in the office. This might be very important and something you can actually help. If you feel that tension in yourself you can prepare beforehand and learn ways to relieve the stress, if you learn how to do this you might be very surprised at how it carries into your appt. along with you. Just as weaning off of methodone is not easy, not a lot else is either, but it can be a lot better for us all around when we concentrate on what *we* can do to make things work in our favor, rather than any of the office personel (who we have no control over).
    Sometimes when you mention changing medications, "I wanted to stay on a lower dose of methadone and just substitute with oxycontin." .. It sometimes sends a signal to Drs (who often like to be in control), and they do not generally like to give a patient what they seem to be asking for. I realise you were only trying to get back on track, but because this was yet another Dr or PA that you were seeing, she would not know that, and people assume a lot-she may have been assuming.
    Just some thoughts.

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