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tortoisegirl 11-14-2014 07:35 AM

Withdrawal from med switch, doctor refusing to raise dose
Hi everyone. I'm in a complicated situation so I apologize in advance for the post length. Hopefully someone will have suggestions, but at the very least I'll get my frustration off my chest.

I got forced into agreeing to try Suboxone (Buprenorphine) as my pain clinic is concerned about my high opiate dose and potential for hyperalgesia. I'm guessing they are getting some sort of outside pressure due to the amount of high dose patients they have. I'm working with a combination pain & addiction specialist for the Suboxone. I've been getting my regular scripts in the meantime from my pain clinic, as I wanted to do the switch over Thanksgiving, as it was advised I take a week off. The pain doc will prescribe Suboxone but won't do the induction and initial dose adjustments, only maintenance scripts, so the plan is to go back to them once my dose is stable.

They really wanted me to go to an inpatient rehab to treat the withdrawal & facilitate the med switch, but I wasn't comfortable at all with that plan, so we finally figured out a home detox plan that all parties are ok with. There is no local hospital that specifically treats pain patients in this situation, so I'd be with the addiction patients, and subject to the same rules as to what meds they would allow, no visitors, and limited phone. No way.

Note that switching to another pain doctor to avoid this all isn't an option as I already visited most of them before finding this doctor, and they are even more resistant to treating pain with opiates, nor did they give me any decent treatment ideas.

They figured out to switch me from Methadone to a short acting pain med for two weeks prior to the Suboxone switch to make it easier, as Methadone has so long of a half life, and you must be in withdrawal to start Suboxone. I was on 80mg/day Methadone, recently down from 120mg/day, as they were no longer comfortable prescribing that much. They say they would be ok with me going back to 60 to 80mg/day Methadone if the Suboxone doesn't work for the pain.

I've been on 240mg/day short acting Oxycodone for almost a week now. I ended up going into a moderate amount of withdrawal the day after the switch, which is quite miserable by the way. Finally got in to see a doc at the pain clinic and they added 120mg/day MS Contin, as my insurance wouldn't cover any more Oxycodone. They were quite reluctant to do even that as the Suboxone doc had recommended the Oxycodone dosage, and they didn't want to give me too much or mess up the plan
for the switch.

I'm not at all surprised with my situation unfortunately as withdrawal has happened each time I've switched meds, although the other times it was milder and they've quickly doubled the dose and everything was fine. Not sure what the resistance is this time as they don't care too much if my dose escalates as the plan is to switch to Suboxone quite soon anyways, and treating withdrawal shouldn't put me at risk of too high of a dose.

I called two days later, still in withdrawal, although now more mild than moderate. I had wanted to schedule an appointment, but we ended up going back and forth a bit on the phone. Finally ended up with them saying to up the MS Contin to 180mg/day, and to contact them about the shortage in pills after I saw the Suboxone doctor. ie. I was not to call again and I had to wait a week until I saw the Suboxone doctor until I'd have any hope in resolving this.

During this time the baseline withdrawal is actually getting worse due to the long Methadone half life (my doctor said it would take about a week to clear out of my system). According to the conversion charts I should not be having withdrawal, but everyone is different. The doctor I saw was guessing that my tolerance may still be higher than we expected as I only dropped the Methadone dose a couple months ago, and quite quickly.

Any suggestions to ease the withdrawal? I had counted on being able to continue working during this time, and only take the time off for the Suboxone switch, per the Suboxone doctor's suggestion. He had said the Oxycodone switch may be uncomfortable, but I don't think he was expecting my current situation either. By the way, most folks online seem to recommend only taking 1-2 days off work to switch to Suboxone, not a week. Trying to go to work hasn't worked out so well and I've been in & out of work all week. The symptoms yo-yo every few hours, even taking 60mg of Oxycodone every 3 hours (thankfully I have some extras saved up so I've been taking 10 instead of 8 of the 30mg pills a day) and 60mg of MS Contin every 8 hours.

At the height of the med effects I'm 95% ok (besides the pain). At the worst its quite flu-like, plus some odd emotional stuff (I've been randomly crying a lot), insomnia, anxiety, etc. Thankful I have Ambien for the night and Ritalin for the day. The only other thing I can think of to take is some old Clonidine I have, but that makes me quite drowsy even at a fraction of a pill, and I'm already struggling with that. Must be part of the withdrawal as I would have thought switching Methadone for Oxycodone would be a big improvement in the fatigue & drowsiness as they are at opposite ends of that spectrum.

I have a bit more Oxycodone I could add, but am concerned if they do a UA when I go to the Suboxone doctor I would have levels too high. Plus at the amounts I've been taking it is causing its own side effects like nausea, and I doubt it would help all that much. Add the pain and I'm a wreck right now. So, I'm crossing my fingers the Suboxone doctor will take pity on me next week and prescribe more opiates for the period of time between my appointment and when I actually start the Suboxone. Or maybe my tolerance will start dropping and the withdrawal will subside.

It appears the pain doc would be ok with the Suboxone doc prescribing as in their eyes I'm not their patient at this time and they've faxed over my recent records. I may also try to get in to see the Suboxone doc earlier, although that is doubtful. Hoping the Suboxone switch will be easier than what I'm currently going through, as although the withdrawal will have to be a full moderate level, it'll only have to be that way for less than a day, and I can be at home, vs. trying to go about my daily activities in mild withdrawal. I'm used to being quite functional as my pain has been under decent control. Thanks for reading! Best wishes.

BB07 11-14-2014 08:56 AM

Re: Withdrawal from med switch, doctor refusing to raise dose
WOW-what a mess, so you were doing well on 80mg methadone pain wise? SO, they(your pm)decided to implement suboxone? That is so ridiculous, I am sorry you are having to deal with this-I don't know how bad your CP is, but I have been told by many others, that the subs just stopped the wd's, and did very little for the pain.

But, depending on the type of pain you deal with, perhaps the subs will be enough.

Don't be too surprised if it does not help your pain-80mg, even 120mg of methadone is not that high a dose for CP, esp for as long you have been a CPP.

So, at least they said if the suboxone does not work-they would rx up 80mg methadone, so that is good, I hope they don't go back on that though.

It would help if you increase your vitc,complex b's,vitd3-they sell an immune vitamin, with that in it,high in anti-ox, and it s great for energy, over-all well being-it comes in lozenges, gummies, chewable and cost around 6-7$ for about 30-40, depending on which one you get-but well worth it. Also, take warm Epsom salt baths-the magnesium in the salts gets absorbed through your skin, and is really good for you-a lot of people don't realize how important magnesium is, and if you don't have enough of it, it affects the way you feel-this is the best way to get magnesium, better than oral, the other is to use a magnesium cream you rub into your skin. Nutrition and immune health go hand in hand for optimal health n well being.

You were not even a high dose pt-80mg, imho. Hang in there. I hope you feel better soon.

tortoisegirl 11-14-2014 09:47 AM

Re: Withdrawal from med switch, doctor refusing to raise dose
I was doing well at 120mg/day Methadone, but not 80mg/day. It was fine for almost a month after the drop, then all of a sudden the pain increased drastically. Quite weird, but I've had that with side effects before (taking quite awhile to kick in). I think they must be getting some sort of outside pressure (DEA?) about their high dose patients, because it sounds like they want this Suboxone detox more as something to add to my chart to justify them continuing to prescribe to me, and as a way to rule out hyperalgesia. Despite all the treatments they have documented as being tried. My state (WA) is quite anti-opiate. My type of pain (headache) and age (late 20s) probably doesn't help though. I think I'm lucky to get any opiates, especially the type and dosages I have.

I'm always eager to try anything different, as I know the escalating dosages are not going to be sustainable indefinitely (although I sustained on 120mg/day Methadone for quite awhile and think only the breakthrough meds are what would affect tolerance significantly), and I was already struggling with side effects. They are hoping that worst case the Sub will reduce my tolerance so I can go back to a lower Methadone dose, and at best work well enough for the pain. I've asked on several different visits about keeping my options open to go back to Methadone, and have been told yes each time, although they have their max comfort level in the 60-80mg/day range with Methadone, which is tough.

I agree from what I have read the results are quite variable, and most think Sub doesn't work as well as opiates. But, it would definitely be more stable as you don't built tolerance. However, breakthrough pain has always been the biggest issue for me, so I'm assuming that would be even worse with Sub, as the options are limited. The doctor said that he's had some success with patients taking more Sub as needed though. Sometimes Diclofenac (a rx NSAID) or Triptans (for migraine) help.

I'm concerned that the Sub won't be enough to even cover the withdrawal as there are some reports that tolerance can be higher than the max effect of the Sub. Or, on the other end, its possible it could actually raise tolerance instead of reduce it.

I'm surprised though that you don't think 80mg/day Methadone is high. My doctor said that I was among the highest dose patients in the practice, and they appear to be the most liberal in prescribing opiates in the area. Took me quite awhile to find them as I hit a dead end with the other pain clinics. I'm on 300mg/day Oxycodone and 180mg/day Morphine now, which I don't think is a low dose either. Conversion to & from Methadone can be quite variable. And I haven't been a CPP for as long as a lot of folks here, only 5 years on long acting opiates (Methadone for all but a few months).

Its so annoying that the symptoms are yo-yoing. Almost fine one minute and horrible the next. But I imagine it shouldn't get any worse at this point since I'm almost 1 week off Methadone. Maybe there will be a plus side to this somehow; I've barely been hungry so maybe I'll lose some weight. Thanks for the support! I'm managing at the moment, but I'm not too functional besides the couch/tv/laptop lol. Its bad timing as I have some social events this weekend. Maybe I can time my meds ok though. Best wishes.

gmak 11-14-2014 10:04 AM

Re: Withdrawal from med switch, doctor refusing to raise dose
Hi kate, I am so sorry that you are having to go through all of this especially since you decided not to do the suboxone and because you have been dong well for such a long time& even functional enough to work! I m sorry that your current medication regimen is getting changed and especially because you were not doing bad but you were doing well on that regimen! Im so glad that you avoided the inpatient rehab setting for addiction because you are physically dependent and will still need to continually be on medicine for chronic pain anyway. I hope that the timing and dosages and change over to suboxone works as well or better than the metha & i hope the drs are done did yet it seems like alot to have through just because of the drs discomfort in
prescribing and i hope it turns out to be a great solution for you as well. Perhaps the dr could give you something to reduce withdrawal symptoms such as the clonidine you mentioned or ive also read benzodiazepines may help some too. One of my friends took clonidine when he was dropping his narcotic dosages after getting an SCS & he took nsaids and hot baths for aches,anti nausea otc meds with meclizine and antidiarrheal meds with loperimide,antihistamines helped with runny nose and tears and used ice and heat for muscle pain but he also had irritability and his health food store told him to get valerian root and melatonin to help insomnia. You will be in my thoughts and prayers and we are here for you always!

tortoisegirl 11-14-2014 05:01 PM

Re: Withdrawal from med switch, doctor refusing to raise dose
Thanks gmak. So luckily the Sub doctor had an opening today so I was able to have my appointment to get the scripts. Unfortunately he didn't bite on recommending any higher of an opiate dose when I asked what to do about my withdrawal for the next week and a half since my pain doc wouldn't prescribe anything else. He said to try some of the meds he was prescribing (Clonidine, Tizanadine, Vistaril for nausea and apparently anxiety, and something for stomach cramps), specifically the Clonidine. I may try that, but last time even 1/4 of a pill was too sedating. It'll be perfect for the main event, but not when I'm trying to be functional. He did agree though that I should be the worst of it since the Methadone is pretty much out of my system now.

In case anyone is curious, he prescribed 16mg/day Suboxone, recommending 4mg four times a day. That is all my insurance will cover (2 strips a day, but they can be cut into pieces), but he said to call if it wasn't enough and I said I could pay cash if needed. Sub can oddly enough be called into the pharmacy. At least I got the visit out of the way as its a big pain to see him...middle of downtown with all the traffic, tight parking garage, etc. Plus I got my script into the pharmacy early in case we run into issues.

Managing ok at the moment, but its mostly the mornings where I have issues. I'd consider setting an alarm to take meds halfway through the night, but my body burns through them so fast that even that wouldn't be so helpful. I still have a lot to be thankful for, as it could always be worse. Best wishes.

gmak 11-14-2014 11:08 PM

Re: Withdrawal from med switch, doctor refusing to raise dose
Hi kate, It seems i remember that you mentioned that you have a high metabolism rate with meds and said it was even confirmed with a blood test at one time. But mainly im so glad that you are being so very positive about it all and starting regimen now and hope you do well!Please keep us updated as per your progress! God bless you and keep you kate!

tortoisegirl 11-18-2014 07:14 PM

Re: Withdrawal from med switch, doctor refusing to raise dose
Update: Thankfully I'm doing better now. Little to no withdrawal symptoms besides first thing in the morning, but I've figured out a routine of taking my pills and getting back into bed for a bit while waiting for the shivers to subside. I even got by on a lower dosage today, so my tolerance must be dropping some. Figured out the best dosing regimen with the short acting meds is to take a pill every 2 hours while awake, which is quite annoying. Only six more days to go! Unfortunately though I've had way too much time to research this whole thing, but yes, like gmak said, I'm trying to see the positive in this. Best wishes.

gmak 11-18-2014 10:00 PM

Re: Withdrawal from med switch, doctor refusing to raise dose
:angel:Oh Kate! Such good news! I'm am really happy that you feel a little better and have figured out what med works when and even if it's a nuisance q 2 hours it is helping and tolerance dropping too! Yay! You know you are my hero right now! I mean it. I think it would be so hard I can't imagine facing it but you have done it with such grace and courage and positivity!! I think I would be a huge moaning whiner! I am Really really proud of you and will keep up the prayers! Of course I care how you are doing and so grateful for update! Hold on because only 6 more days! You have done so great! Inspirational to me!! Are the headaches tolerable? I hope so!:angel:

tortoisegirl 11-19-2014 06:09 PM

Re: Withdrawal from med switch, doctor refusing to raise dose
The headache pain was tolerable until today (with the short acting opiates and extra non-opiate meds as needed). So again, something to be thankful for. Not sure what is going on today but looking forward to going to sleep soon. Maybe I was just too distracted by the withdrawal to notice the pain increase. However, my pain also has a tendency to be late to respond to pain med changes, whether up or down in dose. I only have to make it through 2 more days of work then I have the week off for the med switch. Last week I ended up taking 2 sick days, but thankfully I had them to take. Best wishes.

gmak 11-19-2014 07:23 PM

Re: Withdrawal from med switch, doctor refusing to raise dose
[QUOTE=tortoisegirl;5329316]The headache pain was tolerable until today (with the short acting opiates and extra non-opiate meds as needed). So again, something to be thankful for. Not sure what is going on today but looking forward to going to sleep soon. Maybe I was just too distracted by the withdrawal to notice the pain increase. However, my pain also has a tendency to be late to respond to pain med changes, whether up or down in dose. I only have to make it through 2 more days of work then I have the week off for the med switch. Last week I ended up taking 2 sick days, but thankfully I had them to take. Best wishes.[/QUOTE]
Kate I think you are so strong working during this time and you are right I'm so thankful too that you had days that you could take off! I'm really sorry that you are having a bad headache today and hope that sleep gives you a better day and tomorrow brings a better start with less pain despite all the changes. I will keep checking for updates and praying for you! God bless you!

BB07 11-24-2014 06:54 AM

Re: Withdrawal from med switch, doctor refusing to raise dose

How are you feeling? is pain ok? I hope so.

This am I was thinking back to when I was on methadone in PM, 100mg-I really HATED the way it made me feel-although it was excellent for severe pain.

Hope you get through this with positive outcome, friend.

grandmawwifemom 11-24-2014 10:44 AM

Re: Withdrawal from med switch, doctor refusing to raise dose
my God - this is CRIMINAL!

I hate to hear this story...why?
Because I feel for the person going thru this but also -
because I know it could happen to me.

I was referred to my 1st pain management clinic about 13 years ago.
I have broken yes BROKEN RODS (Harrington) in my back.
The screws seemed to have come lose and traveled UP my spine area
and the rods dropped - it looks to me to be about 2 inches.

Now three different surgeons said they would not touch the surgery
(of taking the rods out) because of all the scar tissue around the area ...
so 13 years ago -
they put me on meds.
Back then - they didn't have some of the non-narcotic pain meds they have now - so I was thrown on Celebrex (which after a few months the Dr called to say stop taking them immediately) and they were pulled off the market for awhile - but back then - they placed me on Vicodin 500 3 - 5 times a day.
That worked for almost 7 years...
I've been told that's great that they worked for that long without tolerance taking over ... after 7 years - I guess I grew tolerant and here came the level 9 - 10 pain ... oh gosh - I only wish
that the drs. I saw back then could feel the pain I was in for 20 minutes. AND during this 20 minutes - I wish they did not know if that pain would ever go away again ...
After searching I found a multidisciplinary type of clinic -
there was a chiropractor - massage therapist - physical therapist and a medical doctor. IT WAS HEAVEN! Between being placed on the Fentanyl Patch, therapy, traction, and being adjusted - my pain dropped (in 1 month) from a 10 to a TWO!

Heaven -
I was in HEAVEN!
Then - because of all the new laws - the clinic changed.
No more PT, no more chiro, no more massage.
The medical dr opened his own place and I stayed with him.

The bad thing?
Well now I've been on the Fentanyl patch 75mc for 8 years.
It has NEVER been increased. So naturally, my level 8-10 pain has returned.
The dr that was with the clinic before it closed -
is not the dr who placed me on the patch and sadly ...
he (my current dr) says he doesn't like fentanyl and wants me to switch to the butrans patch ...

I adore my dr. on a personal basis. I've known him for 5 years (he came in 3 years AFTER I started at the clinic). I don't want to leave him - but I have a lot of allergies and sensitivities to meds. Neurotin makes me feel like I am walking at a slant and so dizzy I can barely stand up. Oxycontins made my chest and neck have red blotches and made it difficult for me to breath.
Norco barely touches my pain. Plus, I don't really want short acting medication. As a chronic pain sufferer - I have to tell you - it IS euphoria to be able to put a patch on - and your done for 3 days! Its nice to wake up and not have to roll off the mattress to reach your pills so you can take 1-2 and then lay down again, waiting for it to kick in.

These clinics - placed a lot of us who had chronic pain 10 plus years ago ... on narcotics. And they worked. Now all of a sudden - they want us to go thru withdrawls or try new meds.

I personally never want to take another medication that has been out for less than 6 to 7 years IN the United States. I've been that route and it didn't go well for me.

Once they put me on Lyrica (this in the first several years)
I was passing out 2 to 3 times a week! That was fun. I thought for sure I had something else health related - no one knew what was wrong with me. I went thru a bevy of tests...a heck of a lot of worry - guess who figured out what was wrong with me?
ME ...
I was up late watching TV and heard one of those commercials that say the symptoms of a medication and fainting was one for Lyrica!
Plus - it didn't seem to help the pain.

Now - I am at a place where I feel like I know what helps and what doesn't.
I've had 11 epidurals - 3 nerve blocks - a mylogram (oh that WAS fun - not at all), bone scans (also a fun time for a person with back problems) and about 20 different people telling me to lose weight and I'll be alllllllllllllll better ...
frankly ...
I feel like if the fentanyl, physical therapy, massage therapy and gentle chiropractic adjustments have helped me - lets stay with this!
My dr says 100 mc of fentanyl is a high dose and he won't up the patch -
but "I" think ... its not so bad when you think, I may not need to up the dose again for several years. I'm scared to death to leave the practice I am at (after 8 years)
And I have no desire to start the gammit of trying new meds again ...
been there - done that.

Do we really have a say in our medical care or no?
I say ... NO.
I've read the pain patients bill of rights...
that's about as true as Cinderella guys.
We don't have rights.
People automatically think we are junkies :(
I hate to even use that word.

Isn't it criminal that this person was placed on these meds
BY A DOCTOR and now - they have to suffer withdrawls ...
Their whole life will be put on hold for months :(
what about the pain once they kick the habit of the narcotics?
Just because there are no narcotics in this persons system
doesn't mean their problems are all gone now!

Darn it - this makes me mad.
It is INHUMANE....

But - what can we do?
Who will listen to us?
Who will even believe us?


I'll say a prayer cos I think that's all "I" can do.
Good luck tortoisegirl
and my thoughts & prayers are with you.

tortoisegirl 11-24-2014 03:10 PM

Re: Withdrawal from med switch, doctor refusing to raise dose
So I hopefully made it through the worst of it last night with the withdrawal. Went about 20 hours without opiates and was bordering on moderate withdrawal. The meds were helpful, although they made me dizzy, drugged, and sleepy but unable to sleep.

Started Suboxone this morning. Not feeling good but leaning towards it being withdrawal, not an issue with Suboxone. Was able to decrease my tolerance by about half in the last few days. Thankfully none of the dreaded precipitated withdrawal. Pain is tolerable as I'm not at work or doing anything. It can take a week or so to stabilize on Suboxone so I'll try not to judge yet.

Called dr about a dose increase as I think at least for now the two 8mg strips a day aren't enough. I think he was leaning towards three but my insurance only covers two a day so he hoped that would be enough. It can be quite variable. To clarify, the hope is that the Sub works on the pain. Its ideal for long term as you don't build tolerance. Things could be worse. Sometimes pain doctors say no more meds for no real reason, and at best you get a month to taper. We're lucky to get anything. Best wishes.

tortoisegirl 11-24-2014 03:19 PM

Re: Withdrawal from med switch, doctor refusing to raise dose
Grandmawwifemom: Ask your dr to check the conversion. The highest dose on the Butrans is well under what you currently get with the Fentanyl patch. It would be ideal for someone opiate naive though. Suboxone could be an option as it has larger dosages. Some folks get pain relief. The only tough part is to have to start in withdrawal. Its quite doable though. I still think my first med switch from methadone to oxycodone was tougher as I didn't know how long it would last (ended up being ~8 days) and I was trying to work. Best wishes.

tortoisegirl 11-25-2014 03:11 PM

Re: Withdrawal from med switch, doctor refusing to raise dose
Update: Still having withdrawal symptoms, but they are improving some. No pain relief however. I think its supposed to work right away for that if it will? Best wishes.

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