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    Old 11-25-2014, 06:22 PM   #16
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    if you deal with tough pain-as I do, suboxone is just not going help much.

    Your PM issue is headache/migrains? you are used to a much stronger narcotic-subs pale in comparson.

    My PM told me a lot of folks with chronic headaches are being put on subs for them-

    he thinks it's a bad idea-depending on the patient.
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    Old 11-25-2014, 07:40 PM   #17
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Yeah I knew going into this it was probably 50-50 on it helping the pain. Maybe it still will, but as the hours pass its more unlikely. Yes my chronic pain is headache (constant since the start). Another issues is that Sub can often cause headache, especially at first, so it could be helping the pain but causing a new headache. I haven't heard of too many folks who say they get good pain relief, unless they were dealing with addiction and it was their only option, so was better than nothing. My pain varies a lot too so that is another variable.

    Apparently it works better for pain relief on tiny doses (like with the Butrans patch), but folks like me have so much of a tolerance they need the high doses, and it would be a long taper to get from 16mg/day to 1mg/day or whatever to test that theory. Hoping things will improve, but at the very least I know my tolerance has dropped quite a bit. Also hoping if things don't improve my doctors don't make me stay on it too long. I don't see why there would be a reason to wait more than a couple weeks. Thanks for the support! Best wishes.
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    Old 11-26-2014, 12:50 AM   #18
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Hi Kate! I'm so sorry that you are having to go through this and I so hope it starts working for the pain especially after all you have been through! How bad is the pain? I want it to work for your pain so much! I don't know very much about Suboxone but it seems like if the withdrawal symptoms are continuing and only slowly improving and pain is remaining perhaps the dosage is not high enough or it may take a few days to get blood level high enough to help the pain? How long does it generally take to know if it's working or not working? Did the dr already change the dosage to 3 strips a day? If not I hope that's a viable solution! I'm praying for you and hope that it gets better day by day! I'm sorry I haven't posted before now bc my mom is still here but was so glad to see the update and wish I could really help. Take good care of yourself and hope tomorrow is a better day and I also hope the dr will just get you back to feeling decent again as soon as possible one med or the other!

    Last edited by gmak; 11-26-2014 at 01:07 AM.

     
    Old 11-26-2014, 07:02 AM   #19
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Yes I think the dosage isn't high enough for the pain, but more may not help either as it has a ceiling effect. I called the doctor's office Monday afternoon about it and still haven't heard back...I've only seen this doctor a few times regarding Suboxone, so I don't know if they even return calls. The doctor said the answering service will actually call him after hours if a patient needs him, but I called during office hours and left a message. Its not an emergency and I'm improving so I haven't done anything further.

    They probably should have instructed me to start with larger doses (to saturate the receptors), then split it into four doses a day. Typically it works right away, like 10 minutes even because its sublingual. However, there is a group of folks where it takes longer, days or even weeks, presumably as their tolerance is higher than the ceiling effect of the medication. Taking more in that case won't help much for the withdrawal as the receptors are saturated.

    Glad I have this week off work and planned everything ahead of time as I haven't moved off the couch much. Best wishes.
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    Old 11-26-2014, 10:03 AM   #20
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Yay I finally heard back from the doctor's nurse that I can increase up to 24mg/day (3 strips). Hopefully not for long as I'll have to pay cash for anything over 2 strips a day and its almost $10 a strip. The insurance has a quantity limit of 2 a day no matter the dose. Probably as its not considered that higher doses do any better for addiction due to the ceiling (and Suboxone isn't FDA approved for pain).

    Thankfully the doctor thought ahead a bit and gave me two weeks worth but a follow up in a week so I don't have to go back to the pharmacy yet. There is a generic pill option too but its not as convenient apparently (doesn't dissolve as quickly and harder to split as it crumbles), but that could be an option if I had to stay on the higher dose.

    Also, apparently they make 12mg strips instead of 8mg but I think they must be special order as the doctor didn't recommend them when I brought up my insurance's limit, and I see almost no mention of them online. I'll have to check with my pharmacy before my follow up so I can advise my doctor. Happy Thanksgiving! Best wishes.
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    Old 11-26-2014, 10:42 AM   #21
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    hi kate-

    I found an interesting article by a Karen Miotto, MD-discussing patients being treated for severe pain with buprenorphine.

    Has your sub doc discussed the possibility of the bup patch as an option?

    Just the thought of having a constant severe headache alarms me.

    My cp issues involve my neck, shoulders, low back and legs-and is quite debilitating-
    thankfully Duragesic 100mcg's have made all the difference in the world for me-have been stable on that dose for 4 years.

    I have oxy 10/325 and oxyir5mg capsules for bt-the patch works so well for me I rarely need the bt meds-just when I over due it-cannot be on my feet longer than 45min, or I really pay......

    I am greatful I can make dinner for my family, due the laundry-but it takes me all day, if you know what I mean, but I feel good about myself to be able to do that much at all-with the help of the la fentanyl patch.

    I also use Requip for my legs at nite, and it really helps.

    I really admire your positive attitude, I know how hard it really is.

    I also read about Zubsolve(Orexo pharm) they claim that because of its advanced formulation that more of the medication gets into the bloodstream than suboxone, meaning a lower dose of Zubsolve is similar to a higher dose of suboxone.

    Happy Thanksgiving.
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    Last edited by BB07; 11-26-2014 at 11:02 AM.

     
    Old 11-26-2014, 03:10 PM   #22
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Yes there is quite a bit of literature about pain management with Buprenorphine, especially in Europe, and here with the patch. I don't think I was able to find the specific article you mentioned though. Some people do get relief. Just not nearly as many as with traditional opiates. Also, in case anyone is curious, I looked it up and it can take 3-7 days to reach steady state with Buprenorphine.

    No we didn't talk about the Butrans patch. I assume as that is literally a fraction of the smallest Suboxone dose...they measure them in micrograms not milligrams. The highest dose is 20mcg/hr, which is 480 mcg/day, which 0.48 mg/day. I am on 24 mg/day so I don't think my insurance would cover as many patches as I would need lol. They even have a ceiling of only one 20mcg/hr patch as their study ran into a risk of QT interval prolongation at 40mcg/hr (which oddly enough didn't happen on the Suboxone study as they prescribe up to 32mg/day of that). Apparently it works better for pain at those lower dosages for whatever reason.

    Butrans is basically only useful for opiate naive patients. The manufacturer recommends less than 80mg/day morphine equivalent, and even then only starting at 10mcg/hr and moving up if needed. I have heard of a lot of doctors switching patients to Butrans without realizing how low of an equivalent dose they are giving them, and putting them into withdrawal. Plus I hated the Fentanyl patch and wouldn't consider another patch. I also hate sublingual meds however.

    Yes I've heard of Zubsolv as well. No point in switching however as Buprenorphine has a ceiling either way. Its amazing that another drug manufacturer was able to get that product approved which is basically the same thing with the different delivery method which allows you to lower the mg (which isn't really necessary as most folks don't have an issue with dose-related side effects as they do with traditional opiates), and apparently improve the taste.

    I realized another crazy side effect today...all food tastes horrible. I thought it was just because I was sick with withdrawal, but now that I'm 90% better I realize my sense of taste is shot. Plus the Sub strips taste horrible and you're not supposed to eat/drink for at least 15 minutes afterwards, so it seems like I have that taste in my mouth all day taking them 4 times a day. My biggest withdrawal related issue at the moment is that I hurt my back somehow. I'm guessing all the shivering and twitching and whatever, or maybe just too much time on the couch. Plus I'm still having gastro difficulties oddly enough, which I never got with mild withdrawal before. I would have thought the Suboxone would have reversed those, same as regular opiates. I guess it takes time.

    I'm surprised that on the 100mcg/hr Fentanyl patch you get any relief from 5 or 10mg of oxycodone. Although my tolerance is probably double that of yours, I was taking 60mg oxycodone at a time for breakthrough (although rarely...I only got 28 of the 30mg pills every 4 weeks, so one dose every other day on average). I know my breakthrough dose is definitely on the high side though. Breakthrough pain has always been a bigger issue for me than my baseline pain, and even the high dose oxycodone wasn't really helpful, and only for a couple hours at most anyways. Best wishes.
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    Old 11-27-2014, 09:10 AM   #23
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    So I think I figured out why I feel especially cruddy and annoyed with the Suboxone...it appears to make my headache pain worse. I've been feeling best when I delay taking it. Until I can get back into see my regular pain doctor I'm going to try to move my dosing schedule to only take a big dose before bed (it should have more than a long enough half life for that once it reaches steady state).

    Still having some withdrawal, but I'd say its about 90% gone. So it took about 3 days, which apparently is typical for folks with high tolerances moving to Suboxone. I've been reading that no matter the dose, the analgesic (and tolerance) level with Buprenorphine is only equal to about 30mg/day Methadone. So I'm hopeful I'll be able to go back onto Methadone at a much lower daily dose, which should appease my doctor and give me some dosage wiggle room in the future (they are only comfortable prescribing in the range of 60-80mg/day max). For reference I had been at 120mg/day and recently dropped to 80mg/day before this whole mess.

    Happy Thanksgiving! Best wishes.
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    Old 11-29-2014, 10:47 PM   #24
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    "I'm surprised that on the 100mcg/hr Fentanyl patch you get any relief from 5 or 10mg of oxycodone."

    Yes-it does help me-I do not "feel them", but when I get a bt issue, a dose of 35mg helps me very much, WITH the patch.

    It is interesting you mention about food tasting horrible-cuz, sometimes, when I experience a patch just not working well for whatever reason, I experience some wd-and my sense of smell and taste become so heightened I get nauseous !!!!!
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    Last edited by BB07; 11-29-2014 at 10:50 PM.

     
    Old 11-30-2014, 06:09 AM   #25
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    Wink Re: Withdrawal from med switch, doctor refusing to raise dose

    Hi. Thank you for sharing this! Please don't think I'm comparing us, because I'm not. You have just always been such a good help to me, and I tried sharing my current situation, and got frustrated with my response. ( I think I may not communicate my situation so well) I am also withdrawing at each of my visits, from the last 4 months. There really wasn't much of any explanation given, just that the Dr. had decided it was too high, all of a sudden. I actually was grateful, and agree. I wasn't happy about how high my past Dr. had gotten me before, on Fentanyl, and had no clue at the time that it was a high dose. Since then, af ter being on here and reading others situations, I didn't like how high I was, and told the Dr. I will work with her. I hadn't meant to every month go to a lower patch. I understood that for about 3 months this would be the case. My next appt. is in a few days, and I want to go there with the same good attitude as I have been, however, this past few weeks, I'm feeling withdrawl alot, and alot more pain. I'm sharing this with you because I really admire your great attitude, and what you share here. Both Dave and Gmak also are very helpful to me. I realize it's not my business to "tell" my Dr. anything. And, I know that something's up for them to all of a sudden start taking me down each month. I started at 175 mcg. Fentanyl. Right now I'm at 100 mcg. Now that I'm here, I do not want to go that high again, the thing is, I do not to go lower, and I realize my say doesn't mean much, so I guess just knowing you're listening to this is enough. I'm very very grateful to you, tortoisegirl. Thank you so much! I appreciate you.

     
    Old 11-30-2014, 09:13 AM   #26
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    karlee: Good luck with your appointment! I would state things how they are...you are having intolerable increased pain and withdrawal. If they insist to continue to reduce your dose, ask what their end game is (a certain dose or completely off the meds, and if the later, what is their plan for your pain), and point out that reducing 25 mcg/hr each time is a larger percent drop as the total daily dose is dropped, and you believe that is too much at a time for you to handle. You have a right to know what the plan is. Might it be time to seek out a new pain doc? As long as you don't get any meds from the new one until you cancel any contract you have with your current one, it should be fine to get another opinion as to if another doctor could better manage your pain.

    Yes you are right we are unfortunately in our doctors hands...they can decide to change our dose or completely cut us off at any time. They have to constantly justify why the patient is on opiates and how they are benefiting. Unfortunately just having the meds reduce the pain isn't always enough anymore. The type of pain matters. Also, the person's functionality. Its better for example if the meds got them from not working to be able to work.

    I have quite a few things against me when it comes to continuing to receive opiate pain meds: young age, headache as the type of pain, high tolerance (easy to assume its hyperalgesia), pain level decrease doesn't seem like much on paper, and the meds don't allow me to do anything extra with my life, only make it much easier.

    BB07: That makes much more sense if you take more than one 5mg pill at a time (you said 35mg). It would actually be quite close to what I was taking in proportion to our tolerances.

    as for me: The withdrawal is completely gone now as long as I take enough Suboxone. It must still not be completely steady state in my system as I have to dose it 3 times a day to eliminate withdrawals, when most folks report being able to go 1-3 days without withdrawal. I had tried to cut down to once or twice a day to get a better idea of what it is doing for my pain, but no luck. Still no perceived pain relief. I also still believe its making my pain worse, adding more of a migraine aspect (pounding headache on one side) to my typical headache. Too bad its of no help with the pain as the side effects are definitely less than with the amount I was taking previously. However, it could be quite dose related, as any dose of Suboxone is said to be equal to 30mg/day Methadone (and I was on 120mg/day at one point).

    Knowing what I know now and with all I went through, I think the better plan would have been to just do a slow taper with the Methadone and see what happened. All these weeks of withdrawal and what it has put my body through is ridiculous to only get a reduced tolerance out of it. Still trying to see the positives in this experience. Its at least something to put on my records as being tried. A slow taper is easier on the body to reduce tolerance than switching to a new pain medication at a lower dose which causes withdrawal, then introducing a drug which causes withdrawal to bring the tolerance level down to that of the ceiling effect of the medication. And yes I do believe the Suboxone caused me precipitated withdrawal as my withdrawal symptoms completely changed after taking it. At least it wasn't that 10x worse than normal withdrawal type of precipitated withdrawal, but it was still pretty miserable and long lasting. Its left me weak/fatigued, haven't been able to exercise in weeks, haven't been sleeping well, haven't been eating well, etc.

    I'm really hoping I won't have trouble being put back on Methadone. I also have a tight time frame as I'm traveling for the xmas holiday, so I have only 3 weeks. My doctors said that option would remain open, but who knows. I'm planning to call tomorrow to get back on the schedule at my regular pain clinic. I also have my follow up with the Suboxone doctor tomorrow. Hoping he doesn't insist I need to be on Suboxone for a month or two just to be sure it doesn't work. I see no reason why it would take that long to evaluate. I think the longer I stay on it the harder it would be to convince my regular pain doctor to prescribe again (the whole you've managed this long without so why now thing). But my regular pain doctor thinks very very highly of this Suboxone doctor and follows his every instruction, so he'll have to be on board. Don't know how I'm going to manage going back to work tomorrow with this pain and essentially no pain meds. Best wishes.
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    Old 12-02-2014, 11:24 AM   #27
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    I have been out of town and missed all this. Kate, I am so sorry for the hell you have been through.
    I went on Suboxone for 90 days because of a perceived breach of contract with my PM. They put me on Subutex for 3 days, then right to Suboxone. I did start out with 2 8mg strips and went up to 3 two weeks later. I had minimal withdrawal from 4-6 Xodol (brand name norco 10/325) a day with the Subutex, which is why they prescribed it as a "bridge." I wonder why they couldn't have done that for you?

    I am back on my old regimen, which barely holds me at a level 5 pain, but my PM will NOT NOT NOT put me on anything stronger.

    I hope you get back to some kind of relief soon. I am going through all this in my 50's, and couldn't imagine having to do this in my late 20's.

    **hug**
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    Old 12-02-2014, 07:44 PM   #28
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    momzworkin: They did do a med bridge with Oxycodone (and Morphine as my insurance wouldn't cover enough Oxycodone for my tolerance level; who knew they had a quantity limit on that of all things, but its actually more expensive than you'd think for a generic) between the Methadone and Suboxone, as that is an even tougher switch as far as withdrawal (as Methadone is too long acting).

    However, its thought that continuing opiates with Suboxone would at worst cause more withdrawal or at best do nothing. They really don't have much data on the use of high dose buprenorphine in pain patients (most literature is actually using a fraction of the dosage, which apparently works better for pain, but that only works well for patients without any opiate tolerance) It just isn't standard practice to prescribe high dose buprenorphine with a low dose traditional opiate.

    I'm glad it worked well for you. Its possible it worked out ok for you as the Suboxone was a much higher equivalent dosage than the Hydrocodone. I think the real root of the issue however was my tolerance...I now believe that Suboxone drops your tolerance if it is higher than the level of the medication by putting you into withdrawal. At least one leading addiction doctor was wrote about that.

    That explains why folks with high tolerance levels have continued withdrawal after beginning the medication, while those with low tolerance levels say it takes away all their withdrawal from the start. My tolerance was pretty high, which is why we think I had so much problems, combined with the likelihood I still had Methadone in my system when I started the Suboxone, even though it was 2.5 weeks in between.

    In retrospect: I think my doctors should have had me taper much more before starting Suboxone, and/or had me on Oxycodone for longer in between. However, the better plan would have just been to taper the Methadone. Same end game without all the suffering. Although I admit if Suboxone had worked for my pain it would have been a game changer. I think its a great option for a first line med for pain patients with semi-constant pain levels (I say semi-constant pain levels as it eliminates the option for opiates for breakthrough pain).

    Currently: Long story short I am thankfully being started back on Methadone. Despite my giving up quite early in the game (1 week on Suboxone vs. about 5 years on Methadone), the Suboxone doctor wrote a fairly glowing report back to my pain doctor about how he still doesn't see any addiction issues, I managed pretty well on my own doing it at home (remember they were recommending I go inpatient for up to a week), and he didn't have any objections to me being re-started on Methadone.

    We'll see about the Methadone dose (30mg/day), but that is what the Suboxone doctor recommended to my regular pain specialist, and is supposedly what Suboxone brings your tolerance down to (although I had yet to reach steady state as far as tolerance as I was still having some withdrawal 8 days later, albeit only between doses, not all the time). My pain doctor said he would have started me at 60mg/day if he hadn't seen that part of the letter. Hopefully I'll end up somewhere in between 30 & 60mg/day.

    I've had a pretty miserable month. The Suboxone-induced migraine still hasn't broke either. The good news is however that I'm starting back on Methadone, have a lower tolerance, have a follow up in a week to raise the dose if needed, and now have some breathing room dose-wise until I max out at the clinic's dose ceiling. Bad news is it'll likely be a few days until I get any relief as the Suboxone has to leave my system; at least I don't have to go into moderate withdrawal to make the switch in the opposite direction. Hoping for the best as far as the Methadone dose and to at least not deal with any worse withdrawals. Best wishes.
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    Old 12-03-2014, 12:18 AM   #29
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Kate, I was on 160mg methadone a day for 10 years and weaned to 40mg/day on my own (over a year) -- to discover no change in the amount of analgesia. Long term methadone actually reset my opioid tolerance. How did you do on 80mg of methadone and how do you think you'll do on lower doses?

     
    Old 12-03-2014, 04:36 PM   #30
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    Re: Withdrawal from med switch, doctor refusing to raise dose

    Hi kate, Thank God this miserable month is almost over for you and im really hoping the methadone helps your headache like always and with the lower dosage and with having a lower tolerance too it will make this all seem worth it I hope! And just in time so that you feel well for your Christmas travels! Thank you for sharing your journey because i think you are amazingly strong!

    Last edited by gmak; 12-04-2014 at 04:57 PM.

     
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