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Unread 01-05-2011, 01:24 PM   #1
NY24
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Default some issue under my tongue from the films...

Hi everyone, its been a while since I have posted..I use to post under the name rasta, but I forgot my info, so I just started a new account. The reason I'm posting 2day is I'm having some side effects from jthe new Suboxone films and I also read another post of someone have similar side effects... I have been on suboxone for almost 4 years now and I just started the films like 2 and a half months ago... So a little over a month ago I started to get these blister/canker sore looking things under my tongue..I have never had canker sores under my tongue, but I didn't think it was any big deal I thought maybe I was just getting a little cold or maybe my immune system was weakened from stress from my job that I started about 5 months ago, but then after a couple weeks it didn't go away and everytime I would take the suboxone film in the morning it would burn under my tongue. It wasn't to bad, and I decided I would just give it some more time because I was thinking that it just hasn't healed yet and that the suboxone was just burning the canker sores..But then one morning b4 I got up 4 work I noticed that it was burning even b4 I took the suboxone film and it looked like I had some thrush going on (which is a white coating under my tongue that could be scraped off with a Q-tip) and under the thrush is look very red and a little irritated and mybe even a little swollen and that was on top of having the canker sore looking things. And I just wanted 2 mention that the canker sore looking things were only on the 2 bigger veins that ran from the back part of the tongue to the front. Now the morning I had all this going on I also felt a little sick in my body, like I had lees energy and I felt achey and I also had some swollen glands along with this...So I ended up calling in to work and going to the emergency room and the doctor said he was going to treat it as thrush and gave me an antifungal mouthwash (nyastatin) I know I'm no4t spelling that right.. Now the Nyastatin cleared up the thrush along with salt water rinses and I took some vitamins and I stopped putting the films under my tongue for a couple days and I melted them on my gums and cheek.. all these things made me feel better and the thrush went away. But now I want to start putting the films under my tongue again because it doesn't absorb very well on my gums, but it seems like the veins under my tongue are not there as much anymore..Like I see a couple small veins and in the back of my tongue I can see where there might be some small veins, but the majority of under my tongue looks pink now..it use to look more purple or blue or it use to look like there were so many veins everywhere under my tongue that it just gave it more of a purple/blue look because there was blood in my tongue..It use to be pink b4, but under that pink it had a blue look..now that is gone and I feel like the suboxone is not being absorbed very much at all under my tongue and I think this vein/blood issue has something to do with it. Also I wanted to say that the sore looking things have not completely healed and I have only been on the antifungal mouthwash for maybe 5 days...everything else has healed but not the bump looking things and the veins have not come back it seems.. I still have a swollen gland to, but it dosnt hurt and its under my chin in the area under my tongue. It can only be felt from the outside, if I kind of feel near my throat/ under my tongue on the outside of my mouth I can still feel it there.. I know this may be a long messy post and a lot of it may not make sense, but I'm trying to type it from my cell phone, because my computer is broke right now, and I'm having a lot of trouble typing in the letters on this phone and for some reason it keeps on bringing me back to the beginning of the post and its very difficult to get back to where I left off, so I'm gtrying 2 type this as quick as it will let me b4 it kicks me off or to the beginning again, so thank u to anyone that took the time to read this and I'm sorry for the misspelled words and just the complet messiness of the message overall, but please bare with me..and anyone who has had something similar or just any input at all would be helpful, because I don't see my dr again until the 20th of this month and I don't want to go back to the emergency room unless I have to.. But I really don't like how this suboxone has been working since this has started.. and I didn't have any of these issues until I switched to the films..thank you everyone...
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Unread 01-05-2011, 02:02 PM   #2
NancyB
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Welcome back NY24, that sure sounds painful. Do you think you can call your Suboxone doctor and explain what's going on and get an earlier appointment? It might be good to do that so he can actually see what going and work with you so you can let that heal. If the strips are causing you problems, you might have to go back to the pills.

You might also try calling the manufacturer's Here to Help program: 866.956.9204. Maybe they have some suggestions.

Let us know how you're doing.

Nancy
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Unread 01-06-2011, 10:27 PM   #3
erikanh80
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I had blisters under my tongue once I was on the film for 3 weeks. I took pictures & brought them to my next Dr appt to show him. There should be absolutely no problem with switching back to the tablet form. Just ask your Doctor.

Also report it to Medwatch. I was instructed to do that, its through the FDA to let them know of side effects you expereince that are not on the warning labels. Its online, very easy.

Just ask to switch back to the tablets.....Ive had no problem since. I was on tablets in the start of my treatment, thens witched to film....I had very bad, painful blistering that happened every single time, immediately after taking the film.
Not worth suffering when u can just switch back.
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Unread 01-09-2011, 02:17 AM   #4
NY24
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Thank you very much for guy's advice...My next appointment is on the 18 and I'm just gonna have 2 wait until then....I'm gonna take your guy's advice and take pics to show the xdr for sure...I will also report it 2 medwatch as well. Thank you nancy for your advice also.
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Unread 02-09-2011, 03:32 PM   #5
TYCANDO
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Hello everyone,

I experienced this same thing NY24. I've been on suboxone for about 4 years and recently switched to the film about 3 months ago. Everything was fine until about a month ago the spot under my tongue where I place the films started to get irritated, and I had the same canker sore things. I didn't think much of it because I do take four doses a day (4-2mg). It slowly started to get worse to the point where it burned badly, and it burned even with no film as you mentioned. Slowly a whitish skin like layer started developing (came off with q-tip) then last week it was full blown. Hurt so bad had to put film on my check. Anyways, went to the doctor he said it was thrush. Gave me mouthwash. Did tests everything came back ok (thrush usually happens to people with immune problems). Doctors only explanation was the films disrupted a balance of some sort which caused the thrush. I am going to go back to the tabs now. Thank you for this post, it helped me figure out what my problem was and if I did not read it probably would still be wondering. Thrush is going away and mouth isn't as sore. Hope this helps others. Also, my veins still appear to be the same as of now.
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Unread 03-10-2011, 10:54 AM   #6
EnjoyingMyJourney
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I had the same exact problem due to the film strips and switched back to the tablets and I'm good as new! And I really liked those film strips too but it wasn't worth the pain. Hopefully they'll come up with a new way to make them since so many people are having so many side effects from using them.
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Unread 06-15-2011, 05:48 PM   #7
krystaalexandria
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I've noticed a slight soreness recently when taking my dose, which is why I read this thread. If this IS thrush, I would suggest to you guys having the problem to take a probiotic, I'm going to try that!
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Unread 07-09-2011, 09:33 AM   #8
Shalalagirl
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Default Mouth Soreness--Report to Here to Help/ problems with films not absorbing

I just got over, mostly, the same mouth problems, just a bit different, with different outcome. My mouth is still a bit sore, and I'm still on the films.

I called the Here to Help program, asking a question that was related to my mouth soreness, and the very helpful person on the phone explained to me that they are tracking this problem, and he wanted the "Lot" number off of my box.

I've been on Suboxone Films for less than 6 months, and they haven't bothered me until now, all of a sudden. I think that part of the problem was because I was cutting my films in pieces rather than taking the whole thing at once, and that caused the medication to be in my mouth more often, which I believe contributed to the problem. Also, eating a lot of acidic foods while on the films did not help.

While reading over the prescribing information that comes in the box of films, I found some interesting information. It says that when switching between the films and pills, patients should be started on the same dose. I knew that, but it also says that patients should be closely monitored because dosage adjustments may be needed. This is because the film has a greater relative bioavailability compared to the tablets. So when switching from the pill to film it could cause over-medication, and when switching vise versa, could cause withdrawal or other indications of under dosing.

My whole mouth was sore, as if I had drank too hot coffee or something. It started in my sublingual area, so I thought, at first, it was the film. But the soreness gradually spread throughout my whole mouth, tongue, cheeks, gums, upper palette, even edge of my lips. It was all red and swollen, and painful even when I wasn't eating or taking the films. (Just like what other people's posts here said). It go to the point where my mouth hurt all the time, and even rinsing with Biotene mouthwash burned. I couldn't stand the constant pain, and finally bought some throat drops with an oral anesthetic in it, but that wasn't even much of a help. I took Ibuprofen every 4-6 hours, but it didn't seem to help as much as I thought it would. Then one morning, the back of my throat, tonsil area, was swollen, and I could barely swallow. It hurt really bad to eat, and even hurt worse to drink, especially carbonated drinks.

It's like I had every symptom of thrush (or overgrowth of yeast), except I did not have the white "fur" on my tongue. I started taking probiotics, along with rinsing with the Biotene and salt water.

My doctor was on a 2 month vacation, and I did not want to bother his office about it, but when it got really bad, I called and talked to one of the receptionists. (My doctor's office does not have RN's on staff). When I told her about it, and asked her if any other patients had complained about it, she said, "Oh, it's happening to you already?". There wasn't much she could do about it, but I was looking for advice, because at this time, I was feeling withdrawal symptoms. I had spit out a lot of my doses, and I believe that a lot of other doses did not absorb. (As others mentioned in this thread).

I had not experienced withdrawal symptoms since before I started Suboxone, 4 yrs ago.

I didn't want to bother my doctor while on vacation, and definitely did not want to go to the ER. So, I just suffered through it, as the withdrawal symptoms had not gotten real bad yet, and I stayed away from acidic foods, was barely taking my films, and kept rinsing my mouth. Sometimes, when I was able to keep my films in my mouth, it would irritate it so much that I'd get this huge mouthful of saliva and have to spit it out or swallow it.

But, my mouth finally started to improve a lot, not totally. Then, I was able to start taking my films without spitting them out, but they weren't absorbing in my cheek as well as sublingual. And, by this time, I had wasted so much of my medicine, that I was running behind ---I was not going to have enough to last until my next appointment, and my doctor was still out of town.

So, I took the rest of my medicine and divided it up to make it last. At first, I was okay, just taking half of the normal amount, but after about 5 days, the withdrawal symptoms really kicked in again, but it was worse.
It would take too long to tell the whole story here, but in short, I went through HELL.

I called the doctor's answering service early one morning, requested a call from the covering physician, no call back, but I did get a call from the girls at the office. They were going to try to help me get more medication so I could stop suffering so bad, and to prevent it from getting worse. I was to the point of almost not being able to function at all.

Well, the on call doc refused the refill, even though the insurance said it was soon enough to get a new refill. I still had 5 more days until I could see my doctor. The Here to Help program told me to call ER's in my area, and only go to one that has a Suboxone Certified doc on staff. I called 5 hospitals, talked to people in the ER directly, and did not find even ONE DOCTOR OR NURSE who even KNEW WHAT SUBOXONE WAS!!! I even had one guy laugh at me.

So, why should I have to be going through withdrawal? That's not the point of treatment. I did nothing wrong, but the girls at the office said the reason why the on call doc would not refill me is because of " what I did", and when I asked them, "What did I do?", she said that he said it was because of the fact that I spit out the medicine. Well it burned! And badly! I've never had such a sore mouth. So, my doctor's office said all they could do was refer me to a Detox facility, that you had to wait over a month to get admitted, or go to an ER. I already know that the ER docs in my area do not know about Suboxone, and when I had to go to the ER 3 yrs ago, I was treated worse than an animal because I was on a drug they didn't understand, and thought I was "drug seeking". That's why I will never go to the ER.

So, I came across yet another issue with opioid addiction and treatment, another roadblock. If someone on Suboxone, for some reason, cannot take their medicine sublingually, there is no help for them, they will have to go through withdrawal, and we all know the problems that can lead to, and the damage it does. My level of opioid dependence is to the point where my life could be in danger from withdrawal, and there's no safeguard, not one that I can find. Now that my mouth was better, and I could possibly take some more medicine, I had run out, and was out of luck.

So, instead of the covering physician calling me in some films to last just 5 or 6 more days, until I could go to my regular appointment, they were willing to let me get severely ill, become drug seeking (which I was feeling), get in an unneeded detox program, or whatever. I did not need this, after working so hard and putting up with so much stigma. My husband was up North, I was alone, and was very scared. I had extra responsibilities because my husband was away at work, over 1200 miles away. I was already to the point where, by the end of the day, I didn't think I would be able to drive to the pharmacy even if someone did call me in a refill. Plus my almost 90 yr old grandmother was depending on me to be there for her, and I just felt like I didn't know what to do. You wouldn't believe what ran through my mind, like, I wonder how I could find someone who could sell me some drug to take away the symptoms, and, thinking, what if I have a seizure, like I did when going through opiate withdrawal in the past.

After making phone calls, calling Here to Help, I was sitting there thinking about how the medical field sets us up to fail. They give us a drug to help us get well, but is dangerous to just quit taking, then they think we're "drug seeking" if we run out, accuse us of diversion, etc., and then the phone rang---I almost didn't answer it. It was the doctor that was covering for mine, and he had accidentally called my number, thinking he was calling another patient. When we got it all straightened out, and he told me that my issue was one that he said "No" to my refill, I was able to keep him on the phone long enough to explain, and he was willing to listen. He said that the receptionist at the doc's office made it sound like I was trying to "divert", I guess, like get extra medicine to sell, or abuse, I don't know, but now that he talked to me he understood my situation, and agreed to call me in enough Suboxone until my doc's appointment. I couldn't believe it! The pharmacy was going to close at 6pm, and it was 10 minutes till 5. So I had a little over an hour to drive over 45 miles, and I barely made it.

I don't think that the public, lawmakers, or most healthcare workers understand opioid dependance at all, or know how important it is, that something like this could cause such problems, even cause someone to lose their life.

I took a small amount of my medicine right after I got it, and was able to drive home a lot better than how I drove from home to the pharmacy. I felt better, but my system was, ofcourse, messed up, as I had been up and down on the medicine, and was in physical and mental distress. I came inside, fed my cats, picked up a bit, and woke up 7 hours later on the kitchen floor, and could not get up. I don't know if I passed out, had a seizure, or what. But one of my cats was crying, standing there looking at me. I remember being in a lot of pain ---my arms were sore from laying on the tile floor. I passed back out again, for maybe another hour, woke up again, and couldn't get up. I laid there, in and out of consciousness or sleep, whatever was happening, and finally got up off the floor. I was sore and stiff all over from laying on that tile floor, I felt like my body was bruised, but it wasn't. I checked myself to see if I had broke a bone or was bleeding anywhere, but I was okay physically. I don't know exactly what happened, but I lost a lot of time, and I think that my body was so messed up from going up and down on the Suboxone, then I finally had some, and it was a shock to my body. Or, it was probably still withdrawal, because I had only taken one small dose of Suboxone. I am lucky that I didn't hit my head when I fell and bled to death or something awful like that. I really don't think that doctor's and other's know how important it is to take down these roadblocks they have up for opioid dependent people who are trying to get help and do the right thing, rather than turn to street drugs. I am lucky that street drugs were never available to me during my addiction, because I probably would've taken them when I first went through withdrawal in the past, after my neck surgery.

I'm sorry to write all of this, it's so long, but I hope some lawmakers, doctors, nurses, or someone who can help change things reads this. If a person on thyroid medicine ran out of their meds, for any reason, the medical community would look at it like it was an emergency to get them their meds, but not for us folks on Suboxone.

This all brought up new questions in my mind, and I realized something I had not thought of before----Sublingual buprenorphine is not the only type or route that is available......if needed, there is a form that can be given intravenously, like at an ER, they would never, ever offer it to someone who wasn't able to take it sublingually. They would just let the person go through withdrawal, which is inhumane.

So, a sore mouth from taking the film can be a big deal, especially if it's to the point where it makes a person go through withdrawal. This issue needs to be addressed, and hospitals need to start stocking Suboxone in their pharmacies, so when a patient is admitted, and they don't have their meds on them, they can stay on track with their treatment.
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Unread 07-09-2011, 07:56 PM   #9
NancyB
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Hi Shalalagirl, first, I'm glad you're ok after all you went through and didn't get hurt when you ended up on the floor. Is your mouth ok now with the new box of the film?

Unfortunately, there are so many ERs, doctors and people in the medical field who have no idea what Suboxone is or how it works. Hopefully some day soon that will change. We can just keep trying to spread awareness and educate people as we encounter them.

Thanks for telling us, and I'm glad you're ok.

Nancy
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Unread 07-11-2011, 08:58 AM   #10
Shalalagirl
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Default Mouth better, still stings a bit, still taking film but less often

Quote:
Originally Posted by NancyB View Post
Hi Shalalagirl, first, I'm glad you're ok after all you went through and didn't get hurt when you ended up on the floor. Is your mouth ok now with the new box of the film?

Unfortunately, there are so many ERs, doctors and people in the medical field who have no idea what Suboxone is or how it works. Hopefully some day soon that will change. We can just keep trying to spread awareness and educate people as we encounter them.

Thanks for telling us, and I'm glad you're ok.

Nancy
Quote:
Originally Posted by NancyB View Post
Hi Shalalagirl, first, I'm glad you're ok after all you went through and didn't get hurt when you ended up on the floor. Is your mouth ok now with the new box of the film?

Unfortunately, there are so many ERs, doctors and people in the medical field who have no idea what Suboxone is or how it works. Hopefully some day soon that will change. We can just keep trying to spread awareness and educate people as we encounter them.
Quote:
Originally Posted by NancyB View Post


Thanks for telling us, and I'm glad you're ok.


Nancy


My mouth is so much better now. It still stings a bit when I take my film, but nothing like it was. Also, when I eat certain foods, it makes my tongue and upper palette feel "rough", like the skin is excoriated.

I think now, that I had some type of infection. Maybe the film upsets the natural flora in our mouths or something. From reading other's descriptions, I believe that the film is causing many different levels of irritation, and some get so bad that it develops into some type of infection, and yeast infections also. Most of the descriptions definitely sounded like thrush. Maybe that's what I had, but maybe I didn't see white stuff on my tongue because I was rinsing and brushing it so much, I don't know.

I think that when other factors play in, like what we are eating at the time, can cause the irritation or infection to be worse. With mine, I stopped taking the films, and stopped eating acidic foods (and for a short time food altogether), and it had a chance to improve. I am taking my films less often (still the prescribed dose per day), and that is helping me. I think the more time the film spends in our mouths, the more of a chance of irritation.

I remembered something ---- a few months ago, I remember getting my new Rx, and thinking that the film was burning more than usual. At the time I thought that maybe it was my imagination, but maybe it was a change in the film, or it could have been that my mouth was predisposed at that particular time due to what I had been eating.

I hope they figure it out, with a lot of patient input, so that maybe they can suggest better ways to take the film, what foods to avoid, etc.
Good Luck Everyone!
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Unread 09-02-2012, 10:51 AM   #11
Rapper1727
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Default Same thing

Hello these post have been very helpful. I am also(I think) going through something similar. Only I don't have much thrush. It almost feels like the spot where I put the film is dry. Does that mean its just starting to get infected. Mine also doesnt burn as much right now. Also it also seems like the flaps under the tongue have shortened if that makes any sense. Anyways I'm seeing my doctor in 3 days. So maybe if was a bad batch or something who knows. If anyone has gotten these same symptoms please let me know. Also is these a life threatening symptom? Thanks for any help.
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Unread 10-19-2012, 10:37 AM   #12
journey723
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I am dealing with the same thing and it burns so bad when I put the film under my tongue! I have been on Suboxone for almost 5 years and have never had a problem until I switched to the film, I cant even brush my teeth because it burns so bad. I just called my Doc and left a message that he needed to give me a script for the tabs, I just hope and pray they dont put me thru a bunch of bullshit.
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Unread 10-30-2012, 11:25 AM   #13
silverjk
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Default under tongue burning/sores

I've had the same problem with the films causing serious issues under my tongue including sores, redness and severe burning. The conditions started developing after a few days of taking the film instead of the tablets which I had taken for several years without issue. I first noticed some moderate burning upon placing the film under my tongue. The burning worsened to the point that I could hardly bear the pain. I took a look under my tongue after several days and noticed what appeared to be white sores under my tongue, first on the sides but then extending fully accross the under side of my tongue, after a while. The sores became larger to the point where there was no significant space under the tongue to place the film where it was somewhat free of sores. Long story short, I went to various websites looking for cures or treatment of canker sores, not really certain that the film was actually causing the problem. I tried various suggested in-home treatments as well as prepared OTC medications I purchased from the drug store. None of the treatments or products I tried were very effective, so I went to my doctor who switched me back to the tablets. At first the tablets caused the same level of burning because it seems the "damage had been done." Fortunately, around the same time, I went to a chiropractor (of all things) for an unrelated issue and mentioned my tongue problem to him, as I had faith in him since he had previously offered some sensible suggestions for the treatment of some other minor, common ailments. He suggested that my body may be deficient in "good bacteria" which could be restored by eating yogurt with live, active cultures. Having tried most everything previously without much luck, I thought why not, and that evening started eating yogurt. Within a few days, I noticed the buring and the sores began to subside and within a couple of weeks I was okay. I don't know whether yogurt is actually the cure but it worked for me and it may work for others who have the same problem. I strongly encourage you to try it and if it works, pass the word around because many others will start having the same problem since the tablets will not be around much longer.
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Unread 10-30-2012, 12:03 PM   #14
anibis
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Yeah I had the same tongue problem when I started films. My doctor said I would adjust but after 3 months of it I switched back to tablets and after a few days my tongue was better.

I did some research when I was having those issues and a lot of people have the same adverse reaction, hopefully RB will figure this out before they discontinue tablets.
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Unread 10-30-2012, 12:50 PM   #15
NancyB
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Hi, anyone having a problem with the film might think about contacting MEDWATCH.

The FDA Safety Information and Adverse Event Reporting Program
MedWatch Online Voluntary Reporting Form (3500)

https://www.accessdata.fda.gov/scrip...tch-online.htm

Here's an older thread with some information when erikah80 contacted them:

http://www.addictionsurvivors.org/vb...ad.php?t=25925

Might be an especially good idea now since Reckitt Benckiser is talking about discontinuing the tablets and we're not sure when a generic Suboxone tablet will be out.

Nancy
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