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  • Withdrawal from med switch, doctor refusing to raise dose

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    Old 12-03-2014, 07:35 PM   #31
    tortoisegirl
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Thanks everyone! Already doing better (both withdrawal and pain). Hoping things keep improving and I don't have to deal with sneak attach withdrawal from the Suboxone in a few days when it really starts to wear off. I think I'm owed some good luck. I was thinking today that I'm currently about 5/5 for having withdrawal when switching pain meds, so we'll see. My doctor seems fine with moving the dose up from here.

    I'm more worried if I'll get a breakthrough pain med back as that has always been the bigger issue for me. They haven't worked well for me in awhile so that will be the bigger test. I get some huge pain spikes that can be tough to treat, and would take Oxycodone, Amerge (a Triptan for migraine), and Diclofenac (an NSAID) all together quite often.

    rtfirefly: So glad the dose decrease worked out for you. My pain doctor said he has had that happen for quite a few folks, where they were able to decrease their meds no problem, often even having reduced pain. That likelihood of hyperalgesia was something they wanted to test. However, from my reading, like Buprenorphine, Methadone is often used to treat hyperalgesia, and is the least likely med to cause it.

    I think I was moved up from 70mg/day to 120mg/day a few years ago too quickly (literally all in one jump, although we tried two other long acting meds in between with disastrous results). I only spent a month or two when I dropped to 80mg/day before this whole mess (after dropping from 120mg/day in the course of a few weeks) and at first I didn't notice a change in pain, but after 2-3 weeks it seemed to hit all at once. I bet if I had tapered slower or even just held there for awhile it wouldn't have been as bad though.

    I literally started on daily opiates at 60mg/day Methadone (tapered up over the course of a few months as I had a high tolerance from short acting, even though they weren't daily), then 70mg/day for a bit, then everything went south and I finally got into a pain clinic and they had me jump to 120mg/day, over 5 years. After a year or so on that dose my pain actually went down, not up. So I'm hopeful the right Methadone dose will be sustainable for me long term, as long as I'm not on too many short acting meds.

    My doctors have always kept those pretty low though, one dose per day or less though. Not sure what went wrong when the 60 or 70mg/day stopped working, as I did ok on that for a good couple years, then did ok on 120mg/day for a good couple years. So it would be pretty funny if I ended up on less than 60mg/day now. Here's to hoping. Best wishes.
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    Old 12-03-2014, 08:16 PM   #32
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    Wink Re: Withdrawal from med switch, doctor refusing to raise dose

    Hi. Yes, Kate. I agree with Gmak. You are amazingly strong. Even when going through all this baloney lately, I'm proud of you for sharing on here instead of just isolating in your bed. I have done that before and just really gotten myself in a worse place. I didn't notice it then, but, as I look back, I sure do see how I've made myself more depressed. I never intend to do this, but, at the time I just don't see any options at all. And then when I notice all this, like right now, I am just SO SURE that I'll never ever let myself do that again. The thing is that I just saw my Dr. today and am feeling much better right now, so of course I'll be thinking that way right now.

    Kate, I wanted to thank you for your suggestions up above, for me to talk to my Dr. about today. It ended up to work well because I went ahead and wrote down my main issues and problems with this Fentanyl patch withdrawl these past few months. I also wrote down some withdrawal symptoms like you mentioned. And, then I asked what exactly is our goal right now, by these changes. The thing is, I wrote a short letter to her, just as if I was going to mail it. Instead, I handed it to her right off when she came in the room. It may seem silly when I could just ask her these things, but I never do. Something always happens to sidetrack me once I'm in that room, and then I'm answering her other questions. She told me that she has no problem writing the same strengths as last month considering my withdrawal symptoms, and also that right now we don't know my exact goal of what strength. That makes alot of sense to me. I like that she didn't pull some number out of a hat that everyone will be at. She also really commended me on how often I write these "notes" and hand her for good communication between us. I feel alot better about all this now and told her I'm willing to keep lowering my patch, even though I really don't want too. I will. One of the best things about handing her these notes of my issues is that every one of my visits is a 3 hour wait in her waiting room no matter what. It's for every one of us. This way, she can answer to my much more "polite and respectable" previously written note, instead of my "sick and tired of waiting for 3 hours past my 11 am scheduled appt. mouth" that is not ever as patient and kind by the time I finally get called in to see her. Seriously. We desperately need another Pain Dr. in our area! When I made my next month's appt., the receptionist told me that there are 3 of us scheduled for 11 am on that day. I thought to myself: "What's new?!" Obviously, they do this every month. I have no other options tho, so it'll have to be ok for me. Phoenix is over 200 miles away. Thank you so much for your suggestions, and for listening to me! Please keep up your fantastic work! I think you are doing way better than even you realizes. You may not notice this NOW, but, one day looking back on it, I hope you'll take the time to think about all you're going thru, still giving friends ideas and suggestions, and also keeping up a great attitude. Please give yourself more credit. You are truly appreciated.........

     
    Old 12-04-2014, 05:06 AM   #33
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Agreed that a lot of coping with chronic pain is attitude. I just don't let myself wallow. I also push myself to go to work everyday... I don't really give myself the choice not to as its way too easy to convince myself I don't feel well enough to go in.

    I'm glad your appointment went well. I've done the same sort of thing with summarizing my thoughts in writing for doctors, whether I just use it as a base for conversation or just hand it to them. I think much better in writing than with speech. So do you think you have your answer as far as their end goal? I'm confused if you understand why they are tapering you down. One of those all of a sudden we think your dose is too high sort of things and let's see how low we can get it without your pain levels suffering too bad?

    That wait time is ridiculous. I imagine they likely have a lot of complicated cases that take time to manage, but they need to either stick to their schedule or allow for longer appointments or something. Even hiring a Physician's Assistant if they can't find a doctor would help (lots of clinics rely on them as the reimbursement is pretty close to that of a doctor but their salary is lower). Can you get an appointment first thing in the morning, or does that interfere with your work schedule or something, or do they just assign you a time and you have to deal with it?

    I always do late afternoon appointments because of work so I'm used to waiting at doctors's offices, but the worst I've ever had was an hour and a half, and that was a one time thing. Its ridiculous they are so overbooked, but I imagine they just can't kick patients out, and they probably have lower rates of attrition than other types of doctors, so even just not taking new patients won't help much for awhile. They could try to get some of their stable patients on an every 2 or 3 month schedule and just pick up scripts between though. Too bad you don't have another option.

    Thanks so much for the support (and even praise). Just since starting back on Methadone I've noticed a hug difference in my attitude. I think it comes down to hope...I surely felt the Suboxone was a dead end for my pain. Best wishes.
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    Old 12-04-2014, 09:02 AM   #34
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Hi. Ok. Well, I realize I have no other options as far as switching Drs. Every time I'm in that waiting room, I talk to those by me as to where there from and do they also wait a few hours every time they go there. And, yes they do. I know my Dr. overbooks and we all wait. He is a bit greedy for $$ is my guess. I also have to drive 3 hours round trip for each appt. since he's out of town. I live in a small town with only 1 Pain Dr. He's a jerk. He did not care about me at all but tried to talk me into getting my daughter to work for him. I went home that day and called my insurance to be switched to the place I'm going now. I've been here for 2 years now. My Dr. of almost 2 yrs., whom I loved up and moved to Tucson and in his place I got my current lady Dr. I can tell that recently something happened to confront them about lowering doses for everyone over a certain amount of pain meds. She told me that my current dose of the patch was too high and we needed to lower it. On that day, I agreed thinking it would only be that one time. It wasn't. The next couple visits the same thing happened and I went with it, but, when it started really effecting me, I got frustrated that they don't have my best interests at heart like my previous Dr. did. I now understand the gameplan and feel heard, since I wrote her that detailed letter expressing all this. I didn't know how to say it without being angry, and that attitude I didn't want to show. IT worked out great yesterday because now I know that we are together in this plan. That's all I needed. I'm satisfied now. I know that in the future I'll always write stuff down and hand it to her if that's the only way It works out with this Dr. than that's ok. At least i have that! I am not one to be fast to change Drs. at all. It's important to me to stay in the same place, knowing that I'll tell my Dr. when I'm not happy or don't understand something. As long as this communication works out, It's all good! At least I have that. Many of us don't even have that with their Dr. That's where I am right now with this. Thank you again, Kate.

     
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    Old 12-04-2014, 01:43 PM   #35
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Thank you Kate. It wasn't hyperalgesia -- I had no pain reduction when decreasing dose.

    But I had the same amount of analgesia with 40mg / day than I did with 160 mg/day. This was after 10 years of 160mg/day.

    Instead of an OIH reduction, I believe the medication helped reduce my tolerance. I would like to use it again, after 4 years of dilaudid, then oxycodone, now morphine, but can't find a provider who will write these days, and certainly not at levels needed.

    Providers are scared to death of methadone now. 'Tis a shame, as it's a marvelous medication when used properly by a skilled provider.

    Best wishes.

    Last edited by Administrator; 12-04-2014 at 07:00 PM.

     
    Old 12-04-2014, 07:10 PM   #36
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    rtfirefly: Sorry you cannot find a pain doc to prescribe Methadone. I agree its definitely a medication with which you need an experienced pain doc to prescribe, and its probably not a good first line opiate, but there are lots of pain patients who benefit from it. I was oddly enough started on it as my first long acting med (which there is little literature on; most of what I see is like the article you linked to about opiate rotation to Methadone).

    I'm curious if my pain clinic uses it much, or was only ok with it as I was already on it. Thankfully they had me get an ECG and sleep study, something my primary doctor had overlooked doing. I haven't heard of anyone else saying they think it actually reduced their tolerance, but there are plenty of reports of folks being able to maintain their dose much longer than those on other opiates. I'm still battling the Suboxone-induced migraine. Hoping it breaks soon as I worry about taking Triptans this many days in a row and don't have any other good ideas (I have enough history to know the standard stuff either doesn't work or doesn't agree with me, like a course of steroids). Best wishes.
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    Old 12-04-2014, 08:19 PM   #37
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Hi Kate, I hope the migraine subsides as the Suboxone works itself out of your system. I wish I had a very fabulous suggestion to help rid you of the migraine but I use midrin and I know that particular med doesn't work for you!!! I am still praying for you!

     
    Old 12-04-2014, 08:19 PM   #38
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    I get it. When you're in pain, it is sometimes hard to be rational, even after so many years managing medication.

    Hope the headache breaks soon.

    Best wishes.

     
    Old 12-06-2014, 11:31 AM   #39
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    I'm starting to have some hope about the migraine being gone, as I'm on my longest stretch of time without taking a Triptan since starting Suboxone. I've had some stretches of low pain as well with the Methadone the last couple days, although its clear I still need four times a day dosing instead of three, and its likely some Suboxone is still in my system. I have a follow up next week; crossing my fingers about getting a breakthrough pain med again and a small dose increase with the Methadone. At least I'm probably in the clear as to withdrawal from the most recent switch. Pleasantly surprised for once. Best wishes.
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    Old 12-09-2014, 09:34 AM   #40
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Hi Kate. I sure do hope your breakthru meds work out also. That is something my Dr. hasn't messed with, thank goodness. To answer your question, the reason my Dr. is lowering my patch is that a few months ago, they got pressure from the top dogs about working on lowering all the patients past a certain level. I was one of them. That's all it takes. Actually, I agreed, and willingly am working with them. Also, they did mention they fear that I was on such a high dose, I was also getting more pain from it. (forgot that word). Hyperalgesia? Made sense to me, so I'm willing. I sure haven't enjoyed this lowering and added pain tho. Yes, I did get answers at my last visit, and don't feel so confused and misled. Really hope you get your breakthru meds back. Just having that as an option, really makes a difference to me! Sometimes, I realize I can go a little longer without one, just knowing they're their in case. You deserve that. Please let us know.

     
    Old 12-09-2014, 12:35 PM   #41
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Opioid induced hyperalgesia is a rare condition found studies involving lab rats that have been given excessive doses (>2mg / kg) of morphine and other opioids. While there are a few cases of OIH found in humans, medical science is not yet certain whether or not what we've learned in rats is applicable to human physiology.

    My last pain doctor, who's board certified and has been in practice for over 30 years, has seen three (3) cases of OIH in his practice.

    Yet, most doctors have heard of this condition and according to a recent JAMA study, 43% of PCPs surveyed believe that OIH can cause adverse events at least "Sometimes" and 27% of them believe OIH can interfere with treatment "Often".

    So you see, OIH has more to do with belief than science.

     
    Old 12-09-2014, 06:09 PM   #42
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    The same sort of thing happened with me as far as my pain clinic saying they could no longer prescribe that high of a dose, yet with me they said no to tapering and only gave me the Suboxone choice. Although tapering would have been easier, who knows if I could have ended up on this low of a dose.

    Yes they also mentioned hyperalgesia. I too have also found very little true evidence; it seems to be a convenient excuse doctors use. Although how many pain patients are actually taken off their meds or tapered significantly enough to truly rule out hyperalgesia? However, I think there is some sort of outside influence too with them needing to reduce their high dose patient's doses.

    Today's appointment went well...up to 40mg/day on Methadone so I can take it four times a day again, and got a smaller dose of Oxycodone back for breakthrough pain. Pain levels are pretty close to previous. Doctor was thrilled with my low dose requirements. Pain levels should only get better with low slowly Methadone kicks in. Almost back to my normal routine! Best wishes.
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    Old 12-11-2014, 08:18 AM   #43
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    Wink Re: Withdrawal from med switch, doctor refusing to raise dose

    tortoise girl, karlee-

    Glad you are both doing well.

    Kate, glad your methadone is being re-introduced, perhaps you will do well on a lower dose, only time will tell. How much oxy are you allowed for bt?

    Karlee, a 3 hour wait??? So ridiculous. My PM is so apologetic, if I wait 45 min over my appt. Sitting is my enemy, a huge pain trigger. There is just no way I could manage to sit anywhere for 3 hours-I just don't know what I would do.
    I know there is nothing you can do about this, from your post. At least, you don't have a problem with your spine. It's pretty inconsiderate of your PM-especially dealing with chronic pain patients. But I am not saying anything you don't already know and feel.

    I have been pretty stable for almost 5 years on 100mcg duragesic patch, with the 5mg xyir and 10mg oxy 10/325-I can play with my bt dose, on the occasion I need them. Depending on what I have done, too much sitting, like driving, will trigger it, and too much standing-I cant do either for more than 30 min and I know this, but there are always things I want do, so sometimes I will push the limits-but then I have unrelenting bt pain.

    I will not go higher on the fentanyl-100mcg is enough. I have to NOT do things that I know will cause pain to increase. As long as I listen to my PM,
    my pain is managed well on what I have. Usually at 5-6,and I can deal with that pain level-it is as good as it gets, I know. My expectations of pain relief are not unreasonable.

    One thing we all must remember being on powerful opiates/opioids, they due
    interfere with our hormone levels big time, and this must be monitored, or your cycle will cease, along with your libido.

    Every appt. my PM always goes over this and my vitamins/minerals, and makes sure I am doing what I am supposed to, as it does affect the management of pain too.

    I keep my vitamin levels up 100%-the right amount of minerals and vitamin levels are essential and do effect how you feel whether you realize it or not(affects pain levels)-if you give your body what it needs-makes all the difference in the world. For magnesium, I take Epsom salts baths, this is the best way to absorb it, other than topical creams.

    I know I am lucky to even have a really good PM doctor who actually cares and listens. In return he expects me to do my part by following his instructions to the letter.

    I just had my blood drawn again, which I always dread, only because I am a hard stick!!! PM cks EVERYTHING, last time my vit d was low, so I have been taking a very good(new) D3 supp. along with the other nec. vits and minerals, he also did an am cortisol level-I am feeling pretty good, good energy-so I am hoping my results are good.

    Merry Christmas/Happy Holidays !!
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    Last edited by BB07; 12-11-2014 at 09:18 AM.

     
    Old 12-11-2014, 01:35 PM   #44
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    BB07 --

    Long-term opioid treatment suppresses pituitary secretion of lutein, the hormone that controls both the testosterone cycle in men, and the estrogen/progesterone cycle in women.

    I've been supplementing testosterone (with test. cypionate injections) for the past 12 years or so, and it helps me feel a great deal better.

    In my 50s, I required 400mg once a month, but these days, now in my "golden years," I need only 100mg every 6 weeks or so. When I feel whiny and the sweats coming on, I know its time for another injection.

    Best wishes.

     
    Old 12-11-2014, 04:35 PM   #45
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Quote:
    Originally Posted by rtfirefly View Post
    BB07 --

    Long-term opioid treatment suppresses pituitary secretion of lutein, the hormone that controls both the testosterone cycle in men, and the estrogen/progesterone cycle in women.

    I've been supplementing testosterone (with test. cypionate injections) for the past 12 years or so, and it helps me feel a great deal better.

    In my 50s, I required 400mg once a month, but these days, now in my "golden years," I need only 100mg every 6 weeks or so. When I feel whiny and the sweats coming on, I know its time for another injection.

    Best wishes.
    Also depletes Testosterone hormone in females as well.
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