It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Pain Management Message Board

  • Update - no Suboxone for me just yet

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 03-27-2014, 08:04 PM   #1
    tortoisegirl
    Senior Veteran
    (female)
     
    Join Date: Mar 2012
    Location: Washington
    Posts: 1,204
    tortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB User
    Update - no Suboxone for me just yet

    As some of you know, the last 6 months or so I had been deciding on / planning for a switch from Methadone (120mg/day) to Suboxone. There were concerns about hyperalgesia, my high opiate tolerance, and how to treat my pain long term. Here is an update.

    My pain doc had sent me to another pain doc who has a dual specialty in addiction, and has transitioned some of his patients to Suboxone. I met with that doctor and reluctantly agreed to try the Suboxone once I could arrange to take the time off work to do the inpatient switch. At that time I couldn't see too many reasons not to try it. I was told I could go back to the Methadone if it wasn't helpful, as they didn't have addiction concerns with me. They hoped in that case it would be at a lower dose, as my tolerance would drop, and would have ruled in/out hyperalgesia.

    Now several months later I went back to the Suboxone doctor to discuss the details. Turns out there was a lot of information he hadn't offered up, and instead of having my mind put at ease and questions answered, I only came up with more questions and a lot of doubts about this being a good decision for me. A detox facility that doesn't allow visitors, limits phone use, isn't equipped to manage pain during withdrawal, and only uses a set cocktail of medications isn't a good fit for a chronic pain patient like me.

    I have concerns that depending on the dose, the Suboxone could raise my tolerance, that switching back to methadone would could be rough as it would take time for Suboxone to get out of the system, that my breakthrough pain could get out of control (as its not currently managed well even with opiates), that it could be decided I couldn't go back to regular opiates, or that having Suboxone and/or a detox facility on my record would be harmful sometime in the future.

    Plus general fears/anxiety. I commend folks who have gone through this as just this decision alone was very tough! I feel so much better now though having made it. As tough as I have it with side effects from Methadone, and knowing that other opiates didn't work on my pain, I don't think Suboxone is the right choice, at least right now. I went back to my pain doc today and told him. He surprisingly didn't try to convince me otherwise. I was so scared he'd say that was my only option besides tapering down.

    He told me that another reason they wanted me to switch was because I had one of the highest doses in their practice, they were getting more scrutiny, it puts them at risk, etc. However, it sounds like he wouldn't be requiring any medication changes unless its something I wanted, although he said we can't increase the dose any further. I offered up that if we could get my breakthrough pain under control I was willing to try reducing the methadone dose.

    My average pain level is managed pretty well, but its the pain spikes that are my worst problem. We got up to this dose kinda hastily as I was doing very poorly with pain plus withdrawal at the time from a failed medication trial, I was new to the practice, and they were hoping to get my pain under control, then try other things. I'm not sure why the pain doc had increased it so much in one go though (from 70mg/day to 120mg/day of Methadone with failed trials of Fentanyl & Morphine in between). It worked, so I certainly didn't want to complain, but now I look back and wished we had taken a few months of slower increases.

    My pain relief has oddly enough increased over the last 18 months or so since then, so I hope we could go down a little so there is room to increase later. I'd love to get rid of some of the medications I've had to start for what I believe are side effects. He doesn't seem to have any other ideas for me. I get that, as I have tried so much already in the last 8 years.

    With my pain type (constant headache), there are some differences in potential treatments, with some eliminated and some added vs. some other types of chronic pain. I have some medication ideas from my research though, although many are quite out of the box and mostly anecdotal / off-label. Today he agreed to let me try a NSAID I haven't tried yet.

    Thanks for reading! I hope everyone is doing relatively well. Best wishes.
    __________________
    Kate
    constant headache since 2006

     
    The Following User Says Thank You to tortoisegirl For This Useful Post:
    PhilliesFan20 (03-31-2014)
    Sponsors Lightbulb
       
    Old 03-28-2014, 05:45 AM   #2
    momzworkin
    Senior Veteran
    (female)
     
    Join Date: Jun 2006
    Location: Kansas City, Kansas
    Posts: 845
    momzworkin HB Usermomzworkin HB Usermomzworkin HB Usermomzworkin HB Usermomzworkin HB Usermomzworkin HB Usermomzworkin HB Usermomzworkin HB Usermomzworkin HB Usermomzworkin HB Usermomzworkin HB User
    Re: Update - no Suboxone for me just yet

    Hi! Thanks for sharing your story on Suboxone here. What works for one doesn't work for everyone, right? What other medications are you taking for the headaches or overall pain? I know you read my success story post about Sub and I listed everything else the doc has me on. It's the "cocktail" that works for me. I was also diagnosed with Fibro, though I haven't updated my signature, so the number he has me on seems like alot-it works.
    Sounds like you got lucky and found a great pain group like I did. Makes all the difference in the world, doesn't it?
    Blessings to you while you work out what works for you honey!

    Michelle
    __________________
    07/2006: A/P fusion L4-S1; DX DDD
    09/2009: started PM
    04/2011: Right rotator cuff tear
    09/2011: re-tore shoulder in PT- lost 30% function in shoulder
    06/2013: diagnosed with failure of L2-L3-L4

     
    Old 03-30-2014, 10:30 AM   #3
    tortoisegirl
    Senior Veteran
    (female)
     
    Join Date: Mar 2012
    Location: Washington
    Posts: 1,204
    tortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB User
    Re: Update - no Suboxone for me just yet

    Michelle:
    Here is my current pain cocktail for the headache:
    Methadone 30mg four times a day
    Tizanadine 4mg at bedtime for neck tightness
    Oxycodone 60mg as needed (14 doses every 28 days)
    Diclofenac 50mg as needed (just started this)
    Imitrex 100mg as needed

    Plus other stuff for other conditions, side effects from the pain, and side effects from the pain meds. I've tried numerous adjunct meds and either didn't find them helpful, the helpfulness wore off very quickly, or I couldn't tolerate them. My headache condition is known to be pretty stubborn to treatment. Botox injections, nerve blocks, all the alternative therapies, nerve stimulator trial...you name it I've probably tried it. I'd guess 100 meds & treatments total. I'm actually on Gabapentin now, but only 300mg at bedtime for limb movements, which isn't likely to do anything for pain, and I'm actually not even tolerating that well. Best wishes.
    __________________
    Kate
    constant headache since 2006

     
    The following 2 users give hugs of support to: tortoisegirl
    PhilliesFan20 (03-31-2014),WhistleDixie (03-30-2014)
    Old 03-30-2014, 03:16 PM   #4
    WhistleDixie
    Inactive
    (female)
     
    Join Date: Sep 2013
    Posts: 833
    WhistleDixie HB UserWhistleDixie HB UserWhistleDixie HB UserWhistleDixie HB UserWhistleDixie HB UserWhistleDixie HB UserWhistleDixie HB UserWhistleDixie HB UserWhistleDixie HB UserWhistleDixie HB UserWhistleDixie HB User
    Re: Update - no Suboxone for me just yet

    Hello Tgirl,

    I'm glad that you've made a decision that you feel a peace about for now. I know that you've been through so much. I am concerned for you in regard to the Diclofenac, though. I realize that a medication can be a blessing for one person, yet a curse for another. I just feel a burden to share this with you before you have the adverse effects that I had (have).

    Back in September, as y'all know, I actively pursued every route imaginable to find relief for some of my chronic pain issues. The SAGA continues and I won't go into detail.

    Prior to my consult with Pain Management in January, my orthopedic insisted I take 75mg Voltaren (generic--Diclofenac). I KNEW BETTER but I allowed her to intimidate me into trying it. I took it for about 2 months before she and I had a "falling out". Sure, my conditions require an anti-inflammatory, but it almost caused ulcers in my stomach pouch. I KNOW it was the Diclofenac. I KNOW that my tummy is still suffering the effects this very day. It irritated my "pouch" and made it very "angry" which has made it even more difficult to tolerate the Morphine I am currently taking. I've kicked myself for failing to be my own advocate and refusing to take that particular medication. I had a brief lapse in judgment that I am physically paying the price for, all these months later.

    SO....You are a great support for so many on these boards. I am concerned for you. I realize that you don't have the surgically altered stomach pouch that I have. I care about you and would hate to see you add "bleeding ulcers" to your profile without my having warned you, sweetie. HUGS of support=)

     
    Old 03-30-2014, 04:33 PM   #5
    tortoisegirl
    Senior Veteran
    (female)
     
    Join Date: Mar 2012
    Location: Washington
    Posts: 1,204
    tortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB User
    Re: Update - no Suboxone for me just yet

    Thanks for the concern. I don't have any history of those sorts of issues or any risk factors, so my doctor and I hope that with limited use, taking with food, it would be safe for me. I was prescribed 50mg pills as needed, enough to take 1.5 a day. Not sure if it'll be helpful yet since I only tried it once, but my verdict was it probably helped. My pain varies, so I wasn't certain. Its horrible your doctor insisted you take a medication that you weren't comfortable with and that ended up being so bad for your system. Best wishes.
    __________________
    Kate
    constant headache since 2006

     
    The following user gives a hug of support to tortoisegirl:
    WhistleDixie (03-31-2014)
    Old 03-31-2014, 02:33 PM   #6
    BB07
    Senior Veteran
    (female)
     
    BB07's Avatar
     
    Join Date: Feb 2010
    Location: Lower Alabama
    Posts: 1,102
    BB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB User
    Re: Update - no Suboxone for me just yet

    tortoisegirl-

    I noticed you said you had failed trials of fentanyl patch in between-May I ask which brands of patches you tried-because I found that all of the generic patches were a problem and didn't work well- the only one that works well for me is the brand name-Duragesic-did you try that one as well and did not help either? I can understand the morphine failing for severe pain due to it's poor bio when taken orally.

    I certainly would be apprehensive too going into a situation(the detox) and not be absolutely sure they would control my pain, as your reason for being there would not be for typical detox(an addict detoxing)but for smooth transition to the sub. from a PM pt's aspect and not an addict's.

    BB
    __________________
    constant companion pain

    Last edited by BB07; 03-31-2014 at 02:46 PM.

     
    Old 03-31-2014, 06:12 PM   #7
    tortoisegirl
    Senior Veteran
    (female)
     
    Join Date: Mar 2012
    Location: Washington
    Posts: 1,204
    tortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB User
    Re: Update - no Suboxone for me just yet

    No I didn't get to try the brand name Fentanyl patches as I'd have to pay cash for the price difference between generic & brand (insurance doesn't cover even if prescribed 'no substitution permitted'). However, I was getting little/no relief, was in withdrawal, had so many issues with the patches themselves, and couldn't even get them to last 48 hours, so it wasn't going to be an option even if I had got pain relief.

    Besides the side effects, Methadone has been very good for me. I actually get pain relief (vs. not with everything else I've tried, which is basically everything), and I've been able to maintain my dose pretty well. Thanks for the input! Best wishes.
    __________________
    Kate
    constant headache since 2006

     
    The following user gives a hug of support to tortoisegirl:
    gmak (04-01-2014)
    Old 04-01-2014, 04:22 AM   #8
    BB07
    Senior Veteran
    (female)
     
    BB07's Avatar
     
    Join Date: Feb 2010
    Location: Lower Alabama
    Posts: 1,102
    BB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB User
    Re: Update - no Suboxone for me just yet

    too bad you could not use the Duragesic's-perhaps your experience as compared to the others(generic) would have been nite and day-the generic fent patches are very inferior to the Duragesic-and they last a good 48 hrs
    __________________
    constant companion pain

     
    Old 04-01-2014, 08:58 AM   #9
    LadyBassPlayer
    Inactive
    (female)
     
    Join Date: Jan 2014
    Posts: 222
    LadyBassPlayer HB UserLadyBassPlayer HB UserLadyBassPlayer HB UserLadyBassPlayer HB UserLadyBassPlayer HB UserLadyBassPlayer HB UserLadyBassPlayer HB UserLadyBassPlayer HB UserLadyBassPlayer HB UserLadyBassPlayer HB UserLadyBassPlayer HB User
    Re: Update - no Suboxone for me just yet

    I agree the brand name Duragesic is probably superior, but back when I was on the patches for 7 years, I found the generic Mylan brand to be pretty decent in pain relief and duration, as well as being user friendly....as in better "stickage" ...no gel to be annoying and crinkling .... etc. Just food for thought...

     
    Old 04-01-2014, 12:16 PM   #10
    gmak
    Senior Veteran
    (female)
     
    Join Date: Oct 2012
    Location: USA
    Posts: 2,649
    gmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB User
    Re: Update - no Suboxone for me just yet

    Hi tgirl, I do remember that you were pondering this option & i am so glad that you had another opportunity to find out the information needed to finally come to a decision & that you were allowed to make the decision & made an educated choice & the pm dr agreed & that you can continue on with your present treatment especially with the recent increase in the pain relief! Also, i havent had a dose increase in my meds in 10 years in fact my dosages have been lowered some so it is possible for you to continue to do fine on your current dose for a long while & during that time surely there will be more advances in headache treatment & one of the upcoming new medicines may really help you so much! "Whew" im so glad that this decision on this med is over & done for you & sending you my best wishes for a "controlled" pain future & a hug as well! God bless you, kate!

    Last edited by gmak; 04-01-2014 at 12:24 PM.

     
    Old 04-01-2014, 06:50 PM   #11
    Saturan
    Inactive
    (female)
     
    Join Date: Mar 2014
    Posts: 10
    Saturan HB User
    Re: Update - no Suboxone for me just yet

    hi tortoise. i am a methadone patient. i have no bad side effects, but the dose is low. i hope it works out for you in the best way. dealing with the stigma is tough. best to you.

     
    Old 04-01-2014, 07:29 PM   #12
    tortoisegirl
    Senior Veteran
    (female)
     
    Join Date: Mar 2012
    Location: Washington
    Posts: 1,204
    tortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB User
    Re: Update - no Suboxone for me just yet

    gmak-Thanks for the support! I too am hopeful I could maintain/decrease my dose over time, and that something else will come along.

    BB07 & LadyBassPlayer-After my Fentanyl patch experience I doubt I'd try it again, even with an increased dose and brand name. It makes me question if I'd even want to try any sort of medication patch again. I know so many people are helped by it too. Some of the problem was definitely the dose/size; just finding fresh places to stick two of the 100mcg/hr patches was tough, especially with the rashes I was getting.

    Also, I doubt I was getting anywhere near the full dose though, as even with the covers, the middle part of the matrix patches would come up from sweat. I didn't feel like I could chance not using a cover, as I had no extra patches. I'm also more comfortable with Methadone as it has a track record for patients needing less dose increases, as I have such a high tolerance that developed so fast. I do hope more new pain medications come on the market soon.

    Saturan-Welcome! I'm glad you tolerate the Methadone well. Is it helpful for your pain? Best wishes.
    __________________
    Kate
    constant headache since 2006

     
    Old 04-09-2014, 02:45 PM   #13
    gmak
    Senior Veteran
    (female)
     
    Join Date: Oct 2012
    Location: USA
    Posts: 2,649
    gmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB User
    Smile Re: Update - no Suboxone for me just yet

    Quote:
    Originally Posted by tortoisegirl View Post
    gmak-Thanks for the support! I too am hopeful I could maintain/decrease my dose over time, and that something else will come along.
    BB07 & LadyBassPlayer-After my Fentanyl patch experience I doubt I'd try it again, even with an increased dose and brand name. It makes me question if I'd even want to try any sort of medication patch again. I know so many people are helped by it too. Some of the problem was definitely the dose/size; just finding fresh places to stick two of the 100mcg/hr patches was tough, especially with the rashes I was getting.
    Also, I doubt I was getting anywhere near the full dose though, as even with the covers, the middle part of the matrix patches would come up from sweat. I didn't feel like I could chance not using a cover, as I had no extra patches. I'm also more comfortable with Methadone as it has a track record for patients needing less dose increases, as I have such a high tolerance that developed so fast. I do hope more new pain medications come on the market soon.
    Saturan-Welcome! I'm glad you tolerate the Methadone well. Is it helpful for your pain? Best wishes.
    Hi kate, Speaking of fentanyl patches & rashes,as you know ive worn them for many years & have tried all kinds, like mylan the best & have either worked out any problems i.e. adhesive sticking & i use the covers provided by the manufacturer now so havent had any problems in a very long time. About a month ago i got a blistered area on a corner of the patch, didnt think much about i i make sure to apply it to freshly bathed clean but dry skin but now its happening every week or so & i wondered if your dr told you anything about using a steroidal nasal spray on skin that prevents this from happening? I dont know if it is to be applied before the new patch or after removal on the blisters, my dr didnt know anything about it but said he had heard of this but thats all that he knew about it.

    Last edited by gmak; 04-09-2014 at 02:50 PM.

     
    Old 04-09-2014, 07:22 PM   #14
    tortoisegirl
    Senior Veteran
    (female)
     
    Join Date: Mar 2012
    Location: Washington
    Posts: 1,204
    tortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB Usertortoisegirl HB User
    Re: Update - no Suboxone for me just yet

    Yes I tried the steroid nasal spray, after reading about it online. I asked my primary doctor for it between pain doctor appointments. He said he didn't care how I used it once I told him what I wanted to do with it lol. I don't think I ever discussed it with my pain doctor as I was on the patches only about 2 months. I've read to apply it before a patch, but let it dry sufficiently first.

    I was never able to get it to work...even after letting it dry for half an hour and wiping up the excess, the patch I applied over it wouldn't stick right, as the skin was sticky. It was also too finicky for me, as it increased the amount of time the process took (and I was already changing one 100 one day and two 50s the next, as I couldn't even get 48 hours out of them). Needless to say I was beyond frustrated by the end of it, and wouldn't even have considered continuing on them even if the doctor would have tried increasing the dose.

    I didn't find it helpful for the welts afterwards, plus it was annoying to use & sticky. However, the prescription steroid ointment I have for my eczema did help. It was just so uncomfortable as it healed, and took weeks, which reduced the locations I had to apply fresh patches. I also got the rash/welts at the border of the Fentanyl patches (you could see an entire patch outline for weeks afterwards).

    Some skin on the body is more sensitive and more likely to get irritated. My doctor gave me the ok to try applying the patches to the side of my thighs. That isn't as effective, but less sensitive than the trunk skin I was using. I didn't get itching by the way, just irritated raised skin. Sorry you are having to deal with this. Best wishes.
    __________________
    Kate
    constant headache since 2006

     
    The Following User Says Thank You to tortoisegirl For This Useful Post:
    gmak (04-10-2014)
    Old 04-09-2014, 07:52 PM   #15
    gmak
    Senior Veteran
    (female)
     
    Join Date: Oct 2012
    Location: USA
    Posts: 2,649
    gmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB User
    Re: Update - no Suboxone for me just yet

    Quote:
    Originally Posted by tortoisegirl View Post
    Yes I tried the steroid nasal spray, after reading about it online. I asked my primary doctor for it between pain doctor appointments. He said he didn't care how I used it once I told him what I wanted to do with it lol. I don't think I ever discussed it with my pain doctor as I was on the patches only about 2 months. I've read to apply it before a patch, but let it dry sufficiently first.
    I was never able to get it to work...even after letting it dry for half an hour and wiping up the excess, the patch I applied over it wouldn't stick right, as the skin was sticky. It was also too finicky for me, as it increased the amount of time the process took (and I was already changing one 100 one day and two 50s the next, as I couldn't even get 48 hours out of them). Needless to say I was beyond frustrated by the end of it, and wouldn't even have considered continuing on them even if the doctor would have tried increasing the dose.
    I didn't find it helpful for the welts afterwards, plus it was annoying to use & sticky. However, the prescription steroid ointment I have for my eczema did help. It was just so uncomfortable as it healed, and took weeks, which reduced the locations I had to apply fresh patches. I also got the rash/welts at the border of the Fentanyl patches (you couldsee an entire patch outline for weeks afterwards)Some skin on the body is more sensitive and more likely to get irritated. My doctor gaveme the ok to try applying the patches to the side of my thighs. That isn't as effective, but less sensitive than the trunk skin I was using. I didn't get itching by the way, just irritatedraised skin. Sorry you are having to deal with this. Best wishes.
    Thank you so much! Im so happy that you shared with me your experience! And have given it a try before but sounds like you really had a tedious job changing two/three patches often, especially with limited areas to apply! I have a hard time finding a new area to apply new patch & i only change one! Lol Im reacting along the very edge of patch too. I will discuss all of this with my dr at next appt & see what he says now that im informed better. Thank you againso much!

    Last edited by gmak; 04-09-2014 at 07:57 PM.

     
    Closed Thread




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 08:29 PM.





    © 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!