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 Post subject: hello, my name is vivian
PostPosted: Sun Oct 04, 2015 7:08 pm 
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I am a Canadian woman and student. I was prescribed narcotics for a broken collarbone which was not repaired for 3 years and did not heal spontaneously. I was lucky to have a wonderful GP, who worked together with me to make a plan for a safe responsible weaning off and replacement with non-habit forming medication. I successfully completed my weaning off over more than a year ago and did not consider relapse nor have I had any desire to take any other narcotic medication or drugs since I completed the course of treatment agreed upon with my Dr. I am thankful for all the support and encouragement I received from my Dr. and especially my Pharmacist who was there rooting for me throughout the two years it took to get off my medications. :D
I have quite a few friends and colleagues who are dependent on pain medication, I also have family members who are addicted to street narcotics. I joined this site in hopes of gaining some much needed information about Suboxone and most importantly in hopes of hearing if anyone has experienced the severe negative side effects that can be suffered while taking the medication. I also would like to read other people's experiences with the medication.
The following may be cut and pasted in the appropriate forum. As I am new to the site I am not sure where I should or would post this. Or it is fine to answer my question here if that is appropriate.

Cheers, Viv

I have a good friend who I have known for about five years. During that time he has been the sole caregiver to both his parents as they each passed away from Cancer. My friend has a medical addiction to narcotics and has been trying to stop using them since I have known him. He was prescribed Suboxone in May of this year and suffered an extreme negative response. He was told by his Physician that he should take his last dose of opiates at 5pm and then see him at 10am the following morning. My friend took his last dose at approximately 1pm instead of 5pm, as he had read in all the research he could find from credible sources that it was best to take your last dose of opiates at least 24 hours prior to starting Suboxone. When he saw his Dr. he told his Dr. when he had taken his last dose and his Dr. prescribed a starting dose of 8mg to his best recollection. The first dose was given at about noon that day and from the beginning he told the pharmacist the medication tasted horrible and he felt as though he was going to vomit. The pill also failed to dissolve under his tongue. The pharmacist was surprised at how long it took for the medication to dissolve. He is unsure whether or not he was given the brand name pill or the generic brand. Both were tried due to the reaction he had to both forms of the medication. After taking his first dose he immediately began to feel extreme withdrawal symptoms, accompanied by severe cramping in his legs and feet, severe waves of itching in both his and feet lasting up to an hour at a time, with no relief for more than 10-15 minutes at a time. He felt nausea, had no appetite, sleeplessness, anxiety, restless legs, which he believes may have caused the cramping from his upper thighs through the tops and bottoms of his feet. He suffered, and continues to suffer terrible debilitating head pain. Not simply headaches, this is burning hot pain and pressure in his inner ears, accompanied by a high pitched single tone ringing sensation. This feeling is exacerbated by silent rooms, and loud rooms. While there is no peace, there is some relief in rooms where quiet conversation, low volume television or music. This seems to mask the noise, but does not make it stop. These symptoms began with the first dose and have continued to increase throughout the next approximately 12 days. He is unsure of the times and other information because he has never felt the same despite having been taken off it as a result of his Pharmacist contacting his prescribing Dr. and informing him of the reaction which was being experienced and the visible ill health response to the Suboxone. During the time he was on the medication his Dr. continued to increase the dose until he was taking approximately 24mg a day, he cannot recall the exact dose, but recalls taking three tablets at one time. At no time was he offered water prior to taking the medication, although it had never dissolved appropriately or within the expected/usual time frame. The Pharmacist was surprised at how long it took for the tablets to dissolve although the staff never offered any solution or recommendation that he take a glass of water prior to placing the tablet under his tongue. The Pharmacist did advise rinsing his mouth to try to keep it moist while waiting for the tablet to dissolve. The treatment was started on a Wednesday and the symptoms began to peak on the Saturday, at that time the Pharmacist began to express concern that his withdrawal symptoms were only worsening and advised him to see his Dr. the following week. He developed plantars fasciitis due to the prolonged cramping inhis feet and which has only recently been relieved after spending hundreds of dollars for massage therapy. When the symptoms began to effect his throat and swallowing he was immediately switched to methadone. He was told by his Dr. after the medication had been changed and the Pharmacist had told him he was in the 1 % of people who had this type of reaction to Suboxone treatment that "I generally don't believe what my patients tell me about the amounts they are using because they are usually trying to get more of whatever medications I am prescribing". My friend began taking opiates due to a back injury and was not weaned off his medication when it was time for that course of treatment to stop. His medication was just stopped and he was told nothing about what to expect regarding withdrawal from opiate medication. As a result he became an illegal user and tried to get clean numerous times over the past ten years using methadone and going cold turkey. His family Dr. and his methadone/Suboxone Dr. have not taken any of his continuing symptoms seriously. The have both told him that the pain and other symptoms I have described are 'psychosomatic', caused by his grieving his Mother's recent death, that they are in his imagination, and that they do not want to hear anymore about it and are now unwilling to talk about Suboxone and his continuing and worsening health since having been prescribed the medication. The prescribing Dr. had previously informed him that he was positive for Hepatitis C, although when he asked if it was safe to take Suboxone if ones health was compromised by hepatitis his Dr. told him his last blood screen had come back negative for Hepatitis, and it must have been a false positive. He is still awaiting treatment arranged by that same Dr. for treatment of his apparently non-existent Hepatitis C. Neither his family Dr. nor his Addictions Dr. have ordered further tests to confirm whether he does or does not have Hepatitis. Neither are wiling to send him to see a pain management specialist, they have not done anything or been willing to adjust or change his medication in order for him to have any relief whatsoever. He has told his family Dr. that he is suicidal from the pain and she has not taken him seriously in any way. He has told her that when he receives his inheritance he plans to go to a country where he can purchase enough phenobarbital that he can go and sit under a palm tree and just go to sleep. I have told him that I will be an advocate for him and that I will speak on his behalf because he cannot concentrate enough to articulate what he is experiencing and in what way these Dr.s are NOT abiding by the CMA Code of Ethics. He is afraid to file a complaint with the provincial College of Physicians and Surgeons because he believes he will lose his Dr. or be further mistreated should he stand up for himself. Each of his Dr.s have used abusive language with him, raised their voices to him and have failed in every manner to treat him with any dignity or respect let alone compassion or empathy. Is anyone, or the Dr. who moderates this site who has heard of or experienced this type of reaction to Suboxone. Is there any hope for my friend to recover from the seemingly permanent damage which appears to be a result of taking the medication? It seems to me that he might be allergic to something in the medication and suffered the effects he did due to that being the problem. I cannot in good conscience sit back and watch my friend suffer at that hands of irresponsible physicians, I cannot continue to allow him to believe he is powerless and unworthy of proper and professional treatment. The Dr.'s in this case seem to be covering for making a terrible error in treatment and continuing a dangerous course of treatment in spite of the severe negative and continuing reaction my friend has suffered since May of this year. Any information or advice would be greatly appreciated.

Thank you .all who take the time to respond, especially the Dr. in advance.
Viv

Edited to add, my friend also lost over 50lbs in less than five weeks of taking the medication and continues to lose weight.


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PostPosted: Sun Oct 04, 2015 8:29 pm 
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You wrote near the end of your post that the doctors made some type of 'error'. But even if his symptoms are related to buprenorphine-- which I do not believe to be the case-- what is the 'error'? He was treated with buprenorphine, a medication that has been prescribed for hundreds of thousands of people, who usually have few if any side effects to the medication. Even if he did have some type of rare reaction, that caused him to have side effects, that does not mean that someone 'erred' in prescribing the medication.

It is always hard when a second party complains about the symptoms or treatment of someone else. That happens often in my practice, and in such cases I have learned to ask for the patient himself to call-- since going through a second party invites the problems that people know from the old kids' game, where people pass a message from person to person.

You suggest that your friend has had permanent damage from taking buprenorphine. You wrote that he took the medication earlier than the doctor recommended, and then he had a number or side effects. You said that while he was having more and more side effects, his dose of the medication was increased to 24 mg per day. You don't mention WHY, if he was having such bad side effects, he went along with a dose increase. And you describe some things that are hard to understand, such as ' At no time was he offered water prior to taking the medication, although it had never dissolved appropriately or within the expected/usual time frame.'. What do you mean that 'he wasn't offered water'? Is he not able to turn on the water by himself? Can't he just do what we all do, i.e. take a sip of water if he needs it?

Your comments make it sound as if he is a victim of something. You write as if he was forced to take the medication, forced to go without water, forced to increase his dose, etc. If he gagged and threw up after the medication, why did he keep taking it?

The comments about hepatitis, and about phenobarbital, only add confusion the situation. He may have hepatitis; there are tests that are very straight forward, and I encourage him to have those tests in order to sort things out. Hepatitis C is pretty common in IV drug users, unfortunately. About 20% of people get over the infection without treatment, but the rest have chronic infections that require treatment. There ARE occasional false positives, and they have nothing to do with buprenorphine. People with hep C can be treated with buprenorphine or Suboxone without problem. One has no connection with the other.

I think the first priority is for your friend to stop using opioid agonists, whether using buprenorphine products, methadone, or traditional treatment. He then needs to be tested for hep C, and treated if he has that illness. Most important, he needs to find a doc he can trust-- so that he can ask about these issues, rather than blame his symptoms on a medication that probably has no connection with his symptoms. I must be missing something, but you seem to be saying that he was in perfect health, took Suboxone and then had 'debilitating head pain, pressure in his inner ears, and a high-pitched single -tone ringing sensation.' He then took a higher dose of the medication (you say that 'the doctor increased his dose', but HE is the one who TOOK the medication').

I don't know what is causing his symptoms, but they are not typical in patients taking buprenorphine.


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PostPosted: Sun Oct 04, 2015 9:37 pm 
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Hi, Vivian, and welcome to the forum! I'm glad that you're doing well, and sorry to hear that your friend is suffering these trials. I hope he gets help.

I myself have not suffered any negative side effects from Suboxone, except minor joint pain for a brief period of time (went away and has never come back), and continuing morning sleepiness (but that goes away within an hour of waking up, so all I need is to relax with a cup of coffee before hitting the gym, and I'd be doing that anyway!).

Some do get a few persistent side effects, but they are usually minor. I've never heard of anyone who has had a reaction like your friend's problems. If I understand correctly, he has been taken off of Suboxone and placed back onto methadone, but the symptoms remain. This, combined with the unusual number, severity, and type of symptoms, makes me think it is not caused by the Suboxone. If it was, it would be the first case ever recorded of buprenorphine or naloxone causing these permanent changes, as far as I know!

Regarding hep C, he should definitely get another test, perhaps from a different doctor. In fact, since he feels mistreated by his family doctor and addiction doctor, he definitely needs to find new doctors altogether. If his doctors aren't helping him, he shouldn't be going to 'em! (That said, it seems like they may not have actually made an error in his treatment, because if he reported withdrawal symptoms while on buprenorphine and they prescribed him more buprenorphine, well, that's exactly what would make sense, depending on the time-frame involved.)

****

Some questions for you! A few of the things in this situation are confusing to me.

- He continued to use a treatment he thought was making him sick, and continues to see doctors who apparently treat him horribly... why? Was the Suboxone making him sick the entire four+ weeks he was taking it (if I understand correctly)?

- The things about foot problems, water and pill dissolving, and hepatitis C are not related to the situation, so I'm wondering if he thinks they're significant in some way, or if he (understandably) feels victimized and so includes them for that reason.

- Why the unusually strong reaction to the taste of the orange flavoring in Subs? It almost seems like he was determined to hate it from the beginning, though I do know some people who truly dislike the flavor, albeit to a lesser extent.

- The doctor seems to have accused him of trying to get more medication -- did he ask for more methadone, or is that just out of the blue? For that matter, if the pharmacist agrees that the Suboxone made him sick, can he ask the pharmacist to talk to his doctors about it?

- If he has some sort of mental illness, there's nothing wrong with that at all, but it could be important information to include. I'm not saying he does, but some of the things you've mentioned are suggestive. He seems to have mentioned suicide, so you may want to call or get him to call these numbers!

I'm just trying to get everyone a clearer picture of situation, since quite a lot of stuff seems to be going on. I can believe that the doctors are treating him like dirt -- sorry, Dr, J, nothing against doctors in general! we patients just sometimes get jerked around, and I bet you see less of that as a doctor! -- but the rest of the situation is very strange.

****

Again, I hope this situation can be figured out and resolved, and I wish everyone all luck in the attempt. :)


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PostPosted: Mon Oct 05, 2015 3:38 am 
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Hi Viv!
I'm glad your friend has someone like you advocating for him.
It sounds like he is having a rough time and I'm sorry he is struggling.
I can't really offer much beyond empathy but I did want to respond to the hep c in question.
I would encourage him to seek another hep Antibody test along with liver panel to get a bigger picture on his liver function.
I had hep c for only ten yrs, contracted at 31 yrs old and last yr scored as cirrhotic on a fibroscan test.
I refused TX in the beginning because I was told it was a very slow progressing disease.
In my case I'm sure the years of drug abuse further trashed my liver.
I had no symptoms aside from a dull pain in upper right quadrant.
Is your friend on any other medication? I would try a low dose of subs?
Wishing him the best...


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PostPosted: Mon Oct 05, 2015 7:10 pm 
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Hello
Thank you for taking the time to respond.
Suboxdoc, I absolutely agree with everything you have said and cannot for the life of me understand why my friend would continue to take the medication when he seemed to be having such a negative response. It is not what I would have done. **edited for possible error in my response - Sorry crossfinger who asked the questions I responded to Suboxdoc by mistake-** To answer your questions, I have responded below.
Quote:
He continued to use a treatment he thought was making him sick, and continues to see doctors who apparently treat him horribly... why? Was the Suboxone making him sick the entire four+ weeks he was taking it (if I understand correctly)?
My friend took his medication each day right at the pharmacy. It was taken under the supervision of the Pharmacist. His medication was never given to him to take at home or anywhere other than the pharmacy. There was no place he would have been able to turn on a tap to get a drink. I asked him why he would not have taken water with him and had a drink before taking the medication, especially if he thought the problem was his mouth not being moist enough to dissolve the tablet, or why he would not have asked the staff for a drink before he took the tablet under his tongue. He did not have an answer for me, which is frustrating because of my own personality. I generally tend to be more proactive, especially when it comes to medication and my health. I would have ensured everything was as it should be and would have stopped at the first sign of trouble. In response to your question as to why he stays with Doctor/s who he feels do not listen to him or under whose care he feels he is not receiving the care and treatment he is entitled to under our health care system. The area we live in has been without any Doctors taking new patients for over 10 years, so if he stops seeing those physicians currently seeing him, he will not be able to find or get another. The nearest city to us is in the same position and most of the people in the entire area where I live are without a physician and rely on walkin clinics for their medical needs. This problem is true of the entire Okanagan Valley. He was sick the entire time he was taking the medication and kept asking if his reaction was normal or usual. He was apparently told by the pharmacist, who did contact his Dr. and informed him of the reaction he was experiencing and the pharmacist recommended the medication be changed. That being the case he feels stuck with the care he is receiving and I personally can relate to his situation, as I have been unable to obtain a personal physician for over two years to date. They are simply not taking patients and if you are in need of any sort of narcotics or other pain medication, you are immediately assumed to be a street user/junkie. This is regardless of your pharmaceutical or medical history. It is very biased and one sided.
Quote:
The things about foot problems, water and pill dissolving, and hepatitis C are not related to the situation, so I'm wondering if he thinks they're significant in some way, or if he (understandably) feels victimized and so includes them for that reason.
He did not have any of the symptoms described prior to taking the Suboxone, each exhibited only after he took the initial dose. He does feel victimized by both his family Physician and his Narcotics Doctor. Neither seem willing to take him seriously, and I can easily see why they are able to bulldoze him. He views himself as a victim and therefore he is treated as such.
Quote:
Why the unusually strong reaction to the taste of the orange flavoring in Subs? It almost seems like he was determined to hate it from the beginning, though I do know some people who truly dislike the flavor, albeit to a lesser extent.
The flavour most described here is a minty favour, but regardless, he was excited to begin this treatment and went in with the mindset that it would be successful and work as well for him as it seemed to work for others. He was surprised by the taste he experienced and was told by the pharmacist that his response was not usual. He had a positive opinion and high hopes for the medication to work for him. He was disappointed when it seemed to make him feel worse rather than better. He did tell his care providers how he felt and about his concerns he had regarding the reactions. The Dr. refused to listen and my friend refused/s to take a stand and demand to be heard and taken seriously. I have told him that he either needs to do something about this situation, using the available avenues, or shut up and deal with it. You cannot simply complain, complain, complain and be unwilling to make a change yourself.
Quote:
The doctor seems to have accused him of trying to get more medication -- did he ask for more methadone, or is that just out of the blue? For that matter, if the pharmacist agrees that the Suboxone made him sick, can he ask the pharmacist to talk to his doctors about it?
The conversation regarding his prescribing Doctor and his comments about not believing what he is told by his patients happened after he was taken off the Suboxone. He asked the Doctor about the dose he was given and the effects he felt, especially as he had waited longer than the 12 or so hours the Doctor told him would be enough time for the opiates to leave/be leaving his system. Everything that he read or has seen has stated that the person taking it should have not taken an opiate for 24 hrs prior to starting Suboxone. His Pharmacist was the person who finally got through to the Doctor that my friend was not lying and the Pharmacist was truly concerned for his health and well-being. Had the pharmacist not written the fax to the physician, I am not sure what might have happened. The biggest part of the initial reaction occurred during a period when the Doctor was unavailable. Our local hospital will not deal with any patients who come in with regard to narcotics, unless of course it involves an over dose or something of that sort. In any other case, they treat you as though you are there for the sole purpose of getting meds. I have experienced this myself, even though I was not there to get medication, I only wanted an x-ray to ensure the plate in my collar bone was still intact, as it had broken and snapped off before and I was experiencing the same sensations I had when it broke initially.
The Doctor did make the comment sort of out of the blue, it was not related to my friend asking for more medication or less, it was the response to my friends question of whether or not his reaction could have been due to receiving too much or too little medication. He was not asking for more, or less, he was asking for information.
Quote:
- If he has some sort of mental illness, there's nothing wrong with that at all, but it could be important information to include. I'm not saying he does, but some of the things you've mentioned are suggestive. He seems to have mentioned suicide, so you may want to call or get him to call these numbers!
I do think he is depressed and in need of some sort of counselling or therapy. He does have the mentality of someone who feels victimized and unheard. I am afraid for him and suicide and have made sure that my husband and I keep in contact with both he and his living family.

I agree with you about going through a third person for information. It makes things difficult. I am not looking for information for him, more for myself. As far as the Hepatitis C matter, I would have asked my Dr. to do another test to ascertain if I did indeed have it, or had it been a false positive. I asked about the Hepatitis being a factor because I have read articles which seem to indicate that if this treatment is undertaken by those with Hepatitis A,B, or C it should be done with caution. I would have wanted to make sure the treatment was appropriate. More importantly, I would want to know if I did or did not have Hepatitis.
I have read a lot about Suboxone, but had never heard of such a negative response. Most people I have spoken to or read testimony from has been very positive. I am glad to read that you don't think it could be the medication causing his problems. When I discuss this with my friend and I say the same things to him that you said to me, his response is that of a person who feels victimized. I am at a loss for what to say to him and think he should be in counselling or some sort of therapy for what I feel is overwhelming depression. He doesn't seem to feel that he will be believed or taken seriously if he stands up for himself. He thinks he will be judged and treated as a “druggie” as opposed to a person with human rights and protection under our laws. When I read your response I can hear my voice saying the same things, and I try to encourage him to speak out to someone, whether it is his Dr. or Pharmacist, or a counsellor... anyone who would be able to help him is responses are generally self-defeating. I have told him “look you need to stop letting people control how you view yourself, you are no less entitled to good care under the laws of our province and country as any other person. It I frustrating to see someone persist in allowing themselves be trod upon. I am not that sort of person and can't understand people who let themselves be victimized. I can't seem to get him to realize that if he does stand up for himself, especially if he isn't happy with the care he is receiving he does have the right to receive the care he is entitled to under our medical system. He is afraid if he complains about the way he is treated by his Dr. the Doctor will cease being his primary caregiver. I have told and shown him that no matter what his past is or what he has done, his entitlement to care under the CMA Code of Ethics means that Doctors have an obligation to care for him and treat him with respect and dignity, just as he must treat them. I don't understand why he seems to be so beaten down, and what has made him feel unworthy or so fearful of making a complaint to the College of Physicians and Surgeons in our province. He is afraid to report his experience while he is in need of care for fear of ramifications. I have told him that his Doctors are not permitted to treat him with even less respect, care or dignity simply because he made a complaint. He seems to think that he will not be believed and that he in less credible because he is dependent on his medication. I have tried to tell him “look *friends name* you are no less credible than any person making a valid complaint. You cannot and will not be judge because you have a history of drug use. At this time you are trying and have been trying for nearly 8 years to stop using any narcotics, you are doing all the things you should be, as such any person in a role of advocate/lawyer or what-have-you will take you seriously. Just because you have been treated badly in one area does not mean you will automatically be seen in the same light by those who investigate these matters. I just saw him, he came into our store and picked up some documents from me. I told him he needs to stop approaching this matter with a defeatist attitude, that or stop complaining. He is nearly 50 yo and able to speak and be taken seriously. I told him that he needs to stop being afraid, that his Doctor is not permitted under our CMA Code of Ethics to have his Dr. cease being his caregiver simply because he has filed a complaint about the treatment he feels he is receiving. I said “you need to go in believing that you are a person with dignity and the right to be treated with respect.
You have given me a lot of important information and I am pleased with the comments I have received. I too wish he would join the site and speak for himself. Until then I will continue to figure things out on my own, for my personal self-education, rather than to advise him, which was never my intention.
Thank you again to all who have taken the time to respond. I am going to try to get my friend to join the site and perhaps receive some support through that route.
I wish I could find some information to help him, but as I told him earlier today, he really must be determined to help himself and stop taking the victim role. You are only the victim of those who you allow to victimize you. I think on some level perhaps he has a negative self image and that is manifested in his lack of belief he is worthy of quality medical care. I also believe that the Doctors in our area take advantage of that situation and hold their patients hostage to their demands or threaten to stop being their care provider altogether. All the Doctors in the area are aware of the situation and some do bring their personal beliefs to work. It is sad to see someone who wants to stop using medications which are habit forming getting such poor support and treatment.
Thanks for the rest of the supportive responses, all are appreciated and I am glad to see that as I have read in the past, the majority of people have a positive experience with this medication and ceasing the use of opiates and other narcotics.

Cheers, Viv


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PostPosted: Mon Oct 05, 2015 10:32 pm 
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I wanted to add that it is a pretty much impossible situation to seek methadone or Suboxone treatment from another Doctor. There is only one in our city who is licensed to do so. You either see him, or you go cold turkey. My former Dr. was nearly 400k away from where I live. The pain management Doctor who helped us make the plan to wean me off narcotics was in a city which is a five hour drive away. Regardless I can't help but think that my friend needs to get some help with his emotional situation. I have explained to him that he is going to say that he plans to kill himself to his GP one too many times and she is going to put him in the psychiatric ward of our local hospital. Maybe that wouldn't be a bad idea? Thank you all again for your responses.
I am going to read some posts and get to know this site. :)

Viv


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