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Unread 04-03-2011, 04:31 AM   #1
serrera
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Default Suboxone and Swelling/Edema

I have been on Suboxone for approximately one month. About 2 weeks in I started to notice some swelling in my ankles. I didn't think too much of it, but not long after I noticed the swelling, I began waking up with my hands tingling and numb. Almost a week went by and the swelling was getting worse. Horrible. My legs and feet hurt, and none of my shoes fit me. Then my hands began to ache too. I thought that luckily my appt with my doc was just a few days away.

In the meantime, I found this forum and read about the others that were having the same problems as me. I also called the Here To Help line and they were not too helpful, but said they would take record of my symptoms and phone call. They said that the "white paper" that comes with the drug states that there may be swelling. Well, I did read something about swelling of the face, tongue or throat, but nothing else.

So, I went to the doctor and told of the problems - and I swear I don't think he believed me - and he had never heard of that side effect. He finally checked it out and said that he did believe me after seeing my legs. He gave me two options - quit taking Suboxone, or he's prescribe me a diuretic. He never metioned Subutex?? So, I went with the diuretic.

Well, I'm about 3 days in, and the diuretic is helping, but I can see it's not going to be the answer...so I am at a terrible crossroads here. Not sure I can deal with these side effects.

I see that there is a big debate here about whether or not these side affects are caused by a bup or naloxone or a combination...but what really ticks me off is that apparently - this a known problem...I have been researching and apparently there are two things that the "white papers" I got don't say:

1) that swelling of the limbs IS a KNOWN side effect by the mfr
2) that LIVER FUNCTION should be monitored while on this drug

Neither of these facts are in any of the literature received, nor was it ever told to me be my doctor...and the liver - that's some serious business.

I found this info on the Suboxone website.
http://www.rb.com/FDA-Approval-for-S...gual-FilmC-III

Meanwhile - I can't find anyone that will be honest or believe me...and I don't know anything about Subutex - but it seems that docs are apprehensive to prescribe?? I just don't want to end up back where I was - on pills....

Any ideas?
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Unread 04-03-2011, 08:08 AM   #2
NancyB
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Hi serrera, welcome. Sorry to hear you're having the swelling. That has happened to people who are hypersensitive to the naloxone in Suboxone. One thing that you can try, which has worked for others, is to spit out the saliva after the medication is dissolved. Are you taking the pills or the strips?

Subutex is just buprenorphine without the naloxone. The naloxone is considered 'clinically insignificant' unless someone is hypersensitive. It's also available in a generic formulation. Some physicians are hesitant to prescribe it because of the lack of the naloxone - which helps to deter misuse of Suboxone. Maybe think about asking your doctor if you can try the -tex to see if it is indeed the naloxone that causing the swelling. If you try the spitting thing and the swelling subsides, then that's something else you can tell him.

As for liver function, this is from the TIP40, pdf page 72:
http://www.naabt.org/links/TIP_40_PDF.pdf
Hepatitis and Impaired
Hepatic Function
Pharmacotherapy with buprenorphine is not contraindicated on the basis of mildly elevated liver enzymes; however, elevated liver enzymes should be appropriately evaluated and monitored frequently. Viral hepatitis (especially infection with HBV or HCV) is common among individuals who abuse opioids and should be evaluated and treated appropriately.


If someone has a compromised liver, then it is very important for the doctor to do period liver enzyme tests.

If there is no history of liver problems, some doctors may do a baseline liver enzyme test and then periodically test the enzymes. Some doctors don't find the need to test at all.

This is about bupe and the liver:
http://pcssb.org/wp-content/uploads/...e-naloxone.pdf

Hope this helps. Let us know if you do try the spitting experiment and how that goes.

Nancy
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Unread 04-05-2011, 06:05 PM   #3
Jack123
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Hi serrera,

Maybe it's not well known, but the Liver is at risk whenever we take almost anything in the opiate family, as well as alcohol, and certain other meds. Almost everything has to be metabolized by the Liver. I'm uncertain if Sub is any worse than the pills you were on. I have a compromised Liver because when I was 19 I had Hepatitis B. There were no meds for Hep back then. I had to stay in bed, or a chair for 3 full months. I also wasn't allowed to have any meds, not even Tylenol. I made a full recovery, and have never had an active infection again. But my Liver enzymes are slightly off ideal, and yet I was on Subutex for 5 years without any Liver problems. So it would be a good idea for your doc to run a Full Liver Profile. but I don't think you should stress out over it. Anxiety won't make it better. I think chances are you'll be fine. Unless you have an active Hep C infection, or something like that. In such a case you must tell your doc, and leave the decision to him.

I also experienced the swelling of the ankles and legs on Suboxone. They never called it Edema, nor did they give me a diuretic. I now take a diuretic for Edema, but I'm older and presumably it's coming from my age. I take Lasix aka Furosemide. If you are taking Lasix you are also supposed to be taking a Potassium pill, because Lasix depletes the body of Potassium. If your doc didn't give you Potassium ask him about this. According to my doc Potassium is necessary when taking Lasix.

The swelling is bad, and I couldn't live with it. But as with you, the Sub doc denied the Suboxone was causing it. To get some immediate relief you can buy support stockings in a pharmacy. They help a lot. You put them on the moment you get out of bed, and don't take then off until you go back to sleep. Unless of course you need to shower. But otherwise you have to keep them on. They will keep the swelling down to a minimum, but they won't cure it. For me the answer was to switch to Subutex. Back then the only Subutex in existence was the Name Brand and I had no problems with it. Now we have generic Tex, and I'm having all kinds of problems. The most common generic brand is Roxane, and I think they're terrible. Some other people here are also having problems with Roxane, but they never answered my posts so I don't know if they linked their problem to Roxane yet. Teva also makes Tex, so if you get Tex, hunt for a pharmacy that will order them for you. I found CVS wouldn't do it, and I had to go to a small privately owned pharmacy. I'm on day 4 of Teva Subutex, and they are better than Roxane. I'm still not sure if they're as good as the Name Brand, but they beat Roxane by a mile. My doc also admitted that Teva makes a higher quality Subutex than Roxane.

However, before you do all this, try the Spit Trick that Nancy suggested. Don't swallow any saliva that's in your mouth while dissolving the Subox. Hold the saliva as long as you can to absorb as much of the Bupe as you can, then spit the saliva out. It also is easier if you dissolve small pieces of the tab at a time. So if you intend to take an entire 8 mg tab as 1 dose, break or cut it into 4 pieces, and do each piece separately. It could take up to 2 weeks to see if this works. I think that was how long my legs and ankles took to return to normal.

In the meantime, buy the Support Stockings. They come in sizes, as well as for men and women. So be sure to get the right ones. I got mine at CVS, but I'm sure other pharmacies have them too. In 2005 they cost about $15 a pair. I know it's another added expense you can do without, but they are necessary. The swelling is dangerous, and it hurts.

I hope this helps.
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Unread 04-26-2011, 09:29 PM   #4
serrera
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Unhappy Many thanks!! What to do now??

Thank you for your help and support! Sorry that I didn't respond sooner - but my computer was down for what seemed like forever.....anyhow, I am grateful for your responses.


The diuretic is still helping, but something worse has taken shape... I mentioned that my hands were aching in my original post. Well, that has persisted and gotten much worse. And it turns out that I have developed Carpal Tunnel Syndrome. And I believe it's due to the edema because what I never knew is that pregnant women develop that condition from their swelling and fluid retention while pregnant.

http://www.babycenter.com/0_carpal-t...egnancy_234.bc

So, my theory now is that the Naloxone in the Suboxone is causing the edema, which is causing the Carpal Tunnel Syndrome. Jeez!! And I mean this pain is awful and I cannot bear this anymore. It is keeping me up and/or waking me up at night 3-4 times a night I wake up in throbbing, aching, stinging pain. My fingers are numb and tingling. Its affecting my work on the computer. I cannot grip things. My wrists are popping, causing these electrical shocks to zip up my arms. Both hands both arms! Something has to change. I go to the doctor tomorrow. We'll see what he can do for me.

Thanks again!
Sherry
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Unread 04-26-2011, 09:30 PM   #5
serrera
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Oh - and I am not pregnant! :-)
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Unread 04-29-2011, 04:11 PM   #6
NancyB
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Hi serrera, have you tried spitting out the saliva after the medication is dissolved? It might be worth giving it a try.

How did your appointment go?

Nancy
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Unread 05-04-2011, 12:30 AM   #7
serrera
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I read about and tried spitting it out, but that didn't seem to help. And it doesn't seem like it would since the drug is absorbed mostly through the mouth, so it's already getting in there. I read here somewhere - that some people tried Subutex instead of Suboxone.

And that's what I wanted to propose to my doctor...and I never got that far. I went to the appointment and it went nowhere. I am looking for a new doctor. This guy is too cocky for me. He basically didn't want to hear anything I had to say. He literally told me that "We were going throw all that down the sink" (what I was trying to talk about), and we will deal with the Carpal Tunnel separately. I was a bit floored. He prescribed me Celebrex said if this didn't help we'd look into possible surgery...WHAT?? Anyhow, he sent me on my way. So, now I am taking two other drugs - the Diuretic and Celebrex - that I don't need. I truly believe that it's this Suboxone causing all this trouble - and more specifically the Naloxone. And, all I want to do it try to cut out the Naloxone and see if the rest of my body goes back to normal. I don't think that's too outrageous to ask...does anyone else?

Thanks,
Sherry
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Unread 05-04-2011, 12:39 AM   #8
Selena15
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Serrera,I have the same problem with the Suboxone. My ankles and feet swell up bad. My hands especially in the morning are terribly swollen. I've gotten that I take my rings off at night b/c they cutting in my skin.
Dr.'s swear it's not from that but when i was on Suboxone several years ago i had the same problem. I don't know why they won't at least say,perhaps it could be the Suboxone. Just b/c they don't see this often in pts. doesn't mean it doesn't exist.
Things are stressful enough and they don't help.

Good luck and hang on.
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Unread 05-04-2011, 01:48 AM   #9
alanw
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Sounds like the CT is from other things, like typing. It is easy to blame subs for you symptoms but i doubt that it is. Maybe with the proper exercise and diet things will get better. Goodluck!
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Unread 05-04-2011, 07:44 AM   #10
Jack123
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Hi Sherry & Selena,

I'm one of the people who had experienced extreme swelling of the lower legs, ankles, and feet, and I blamed it on the Naloxone in the Suboxone. That all happened 7 years ago. As you can see, it's pretty bad, so when it was finally gone, I had been changed to Subutex. I was so happy it was gone, that I assumed it came from the Nalox. Now I'm not saying that the Nalox isn't at least partially responsible, but I now think there's more to it. So I want to run these other ideas past you ladies and see if they apply to you.

Before I do that, I want to explain that 7 years ago we didn't have a forum like this one, and I had no way to explore all the possible causes for the swelling. I am also inducting back onto Subutex right now, after being off it 1.5 years, and this time I'm having some hand swelling. But this time I'm not taking Suboxone, only Subutex. However, to further complicate the matter, I'm older and I now have an edema problem, and the doc's have me on a diuretic for it. This edema is separate from Sub. The doc's aren't seeking a reason for it. Maybe I'm supposed to do that. The doc's put me on Lasix, patted me on the back, and sent me home. So this is now another problem I have for which the doc's treat the symptom without even asking what the cause might be. I hate that, but this is how doc's have treated me for several decades now.

Sherry, it's interesting that you mentioned CT Syndrome, because I have that in my right arm and that's the hand that is still swelling up. I also get those electrical zaps you mentioned. So CT and the swelling seem related, possibly.

Here are the other 2 factors I now think are related to the swelling. One is chocolate, the other is too high a dose. Four weeks ago I was eating a lot of chocolate candy every day, and the hand swelling was worse. I have now totally eliminated all chocolate from my diet, and my hands are better. Four weeks ago I was also at a higher dose of Subutex. As the dose is going down, so too is the swelling. I'm now at about 10 mg a day. So I hope you're working on lowering the doses, as well as not eating chocolate.

Sherry, I see you said you tried the spit trick, and you said it didn't work. You'd prefer to try Subutex, and I'm totally on your side. That's why I take Subutex myself. But until you can find a way to get Subutex, I think you should keep doing the spit trick. Are you sure you're doing it right? It also takes several weeks before you're going to see a difference. The reason the spit trick is supposed to work is because Naloxone isn't supposed to be able to be absorbed in the mouth. Only the Bupe should be absorbed in the mouth. Likewise, my doc says the Bupe can't be absorbed in the digestive tract. I think the best way to do the Spit trick is to start by dissolving small pieces at a time. Such as no larger than 2 mg at the most. I know this will take long, especially if you take 8 mg at a time, but I think it's best. Once the tab is dissolved, try to keep the saliva in your mouth as long as you can without swallowing it. Do this with every piece.

I hope you find a doc who will let you have Subutex soon. Let me know how you're doing.

Jack
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Unread 05-31-2011, 05:08 AM   #11
Kevin0
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Default Not Alone

I've not been on this site in a long time and yours was the first post i found and i found it very interesting as i too have suffered with the Edema side effect. One difference with my story is my Sub doc said straight out that likely it is the Subs that are causing it, (he ran a hep test which thankfully came back negative) that any long term opiate usage can and likely will cause edema in some people. I've been on the subs since 2003, a long time! Before that it was all the painkillers i could get my hands on, when my addiction started, after a knee surgery, i was off and running, so i guess my point is i realize that basically i've been on one form or another of opiates for nearly twenty years, its amazing really i've not had more side effects till now. The edema is awful, i feel for you i really do as its just distressing knowing that something must be really off in our bodies for our feet to blow up like balloons, a real bummer. Oh, i forgot to mention my other point which was that i am going to see if i can't get my doc to put me back on the tex since reading this post i see others have done better, less edema, on tex than suboxone. Well, just wanted to let you know someone else out there really knows how you feel and hang in there!

Last edited by Kevin0; 05-31-2011 at 05:09 AM.. Reason: grammer correction
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Unread 05-31-2011, 08:03 AM   #12
NancyB
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Hi Kevin0, have you tried spitting out the leftover saliva after the medication is dissolved to see if that helps? Might be something to try between now and the time your next appointment is.

Hope you can get the swelling under control.

Nancy
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Unread 06-11-2011, 04:50 PM   #13
Shalalagirl
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Dear serrera:
You should see my legs and ankles--I have major swelling, too. Although I don't think it started as quickly as yours did, but I have had big time swelling. I'm on Suboxone 16mg's a day. When I'm sitting, I keep my legs propped up, but it doesn't help like it should. The best luck I've had is with the support stockings, like Jack123 said--I had a pair left over from when I had surgery (to prevent blood clots), and when I wear them, it brings the swelling right down. But, of course, I'm not good at consistently wearing them.

Since my legs have been swollen like this for so long ---over 2 yrs, I now have these dark spots on my skin. My grandmother's vein doctor told me that the dark spots are like leftover iron from the blood in my legs. It somehow gets deposited there from the blood sitting for so long.

I am addicted to Diet Coke, but when I drink less of it, and drink more water, the swelling goes way down. The parts that get the most swollen are the ankles and feet, and sometimes my calves look like they are twice the size. I sometimes have swelling in my hands too. Another thing that helps is exercise.
Hope this helps. Keep us up to date.
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Unread 06-27-2011, 03:23 AM   #14
JamesContin
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I'm very sorry about your condition guys. It just sucks. I believe that in 10 years buprenorphine will be on those commercials you see on TV now for all those different drugs that destroy your body. The lawyer commercials wanting you to choose them to sue people.

There is one doctor I know that has taken on the arduous task of trying to detox people off of buprenorphine (sub). He says that most people who were on long term sub come in with thyroid problems (he calls it thyroid dysfunction), and the men come in with testosterone problems. Which is exactly what I have. The day I was prescribed subutex 5.5 years ago, I did not have any health problems, just an oxycontin habit. Today I have thyroid dysfunction. It goes hypo and then back to normal. So I cannot be put on any drug to fix it. My testosterone is shot. I go from not being able to sleep at all to requiring 14-16 hours a day of sleep. I have gynecomastia (man boobs) which has been proven to be caused by all opiates. It started about 6 months into sub use and just continues to get worse by the month. I have a non STD penile infection that just popped up out of nowhere. I don't have sex with anyone, not even my wife, because the sub shut down my sex drive years ago. So it came out of the blue, which is almost unheard of. It comes and goes. I know it is bup related.

There are no long term studies for what bup does to people. We are the test subjects. But, I know of now 3 forums (not counting this one) that are primarily dedicated to help people with bup related problems. People who get laughed at by their doctor when they ask for help. I do not know of 1 other doctor prescribed drug with as many support forums dedicated to it. And bup has been around less than 10 years.

I cannot get off this drug. Depression is crippling when I try to decrease. I did manage to go from 16 to 8 but can't get below that. Doctor basically tells me I'm a f'ing fool who can't take the mild withdrawal that everyone else goes through with ease. Then when I speak to people in the waiting room, they are having the exact same problem.

It's poison guys. We are being poisoned. Buprenorphine can cause cytolitic hepatitis, it says so on my sub information that comes with the drug.
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Unread 06-27-2011, 01:08 PM   #15
TIM
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James,
Although some side effects are known and expected (constipation, decrease libido) assuming every negative health issue is caused by bupe prevents you from seeking the true cause. Depression is common in people who have become addicted and is often what prompted the addiction in the first place. Self-medicating for conditions like bipolar, clinical depression, anxiety disorders, or a host of other mood disorders often leads to addiction. Very often such conditions are exposed when buprenorphine starts and the cloud of active addiction/intoxication is eliminated. This is why following stabilization tending to any conditions that surface is the first and second phase of treatment- see below:

Phase1. (1 day 2 weeks)
Stabilize on the medication to suppress cravings and withdrawal symptoms. Identify and begin to treat any co-occurring physical disorder, like HIV or HEP-C.

Phase 2 (1-4 weeks)
Identify and begin to treat any co-occurring psychiatric conditions, like Bipolar, depression, or anxiety.
Emergence of preexisting underlying conditions are expected to surface after bupe stabilization. Finding the true source of these conditions is the only way to resolve or control them on a permanent basis. Find competent professionals to help you identify and treat these conditions. This link has a list of caregivers: http://www.treatmentmatch.org/local/


As with any medication, if the side effects outweigh the benefit, then the medication should be discontinued. Since addiction is a life-threatening condition, most people find the side effects of buprenorphine, if they have any, are a far better choice than a return to active addiction.


Tim
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Unread 06-27-2011, 04:42 PM   #16
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Why is it that people who used to stick needles in their arm, injected who knows what into their blood, or took gobs of Tylenol with their pills, drank snorted and swallowed things they bought off some homeless guy, suddenly are so fearful of an FDA approved medication that millions of people have taken safely. Of course it’s not the years or decades of drug abuse that’s causing the health problems - no it must be bupe. If it’s so bad go back to whatever you were taking and free up the spot for someone who wants it. How about a little less blaming and a little more personal responsibility?
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Unread 07-27-2011, 01:05 AM   #17
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hi all. (also hi to Nancy).. i used to be pretty active on here a year or two ago...but as i healed inside and out i did not need to post so much.. saying that, i always skim the posts to keep up with everyone and the posts..glad to see so many people have done so well... and very sad to see others drop off..
Anyway.. just wanted to say that i too have had the same issue with swelling hands and feet and lower legs..Also when i sit still or drive for long periods of time they stiffen and swell.. I am now on lasix and pottasium. I have been on sub for nearly two years.. was and am very healthy, lead an active life and have weaned down from 24 mgs over time to 8 mg now. Planning to be off all together by feb. It takes me a good half hour in the morning however to walk straight.. i feel like a 90 year old for the first thirty mins of the day.. and there are times i cannot walk when leaving the car...lasix helps a lot.. When this first happened, about 12 months into taking them, i went to the regular doc as i thought i had a heart problem.You name it and i was tested for it.. not a damm thing came up.. healthy as an ox they said, appart from fat feet and hands...lol. Also gotta tell you guys that i take bupenorphine...the generic for subutex.. so it makes no difference what type you take.. it still does it to you..I have actually had to get my rings enlarged.. I am just so glad i am not alone in this..With so many of us having the same reaction, why doesnt the medical/pharm world know about it?? My sub doctor had no idea about this either.. I hope this does not come back to bite us all in the butt eventually..???!!!

Sarah Jane
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Unread 07-27-2011, 01:09 AM   #18
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james,

Just thought i would mention the sex drive bit..you said you had no sex drive.. ok.. seems to be a problem in general.. my group meets.. we have talked and done our own studies.. Take
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Unread 07-27-2011, 01:14 AM   #19
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sorry..lol centrum for men.. if you are female reading this with the same problem make sure you take the one for women..not the regular centrum...Also odorless fish oil 1200 mg a day.. obviously clear with a doc first.. don't just do it because i say so.. but there is something in these items that somehow gives the..umm urge back..it is tried and tested with our little group.. could be in the mind but when i took the info to my sub doc she said that it was very possible and is now spreading the world with the other patients having the problem.. hey anything is worth a try right?? and what harm are vitamins.. it worked for me...lol
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Unread 01-01-2012, 01:47 PM   #20
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I know this is an old thread, but i'm responding to it incase anybody new to subs looks in the side effect threads.

As to the swelling issue, I have it and it's been going on for about 4 weeks out of the 7 weeks I have been on suboxene, And it is driving me crazy, I also mentioned it to my sub doctor and she had never heard of it either, Crazy but true, she told me she was going to call the manufactures of the med and find out.

well I quess they never heard of it either becuase win i went to my apt. My sub doctor looked at my feet and ankes legs, she pushed on them and said "OH MY", Ya oh my!! I been saying that every morning noon and night. LOL.. Well I reduse dose, that didn't work. But I must say I totally blamed the subs for this, not the fact that I was drinking no water to mention. I was not spitting the mouthful of salivia out when dosing all the things that has been advised for me to do on this forum.....I just kept taking the subs and complaining of my swollen feet and they do hurt like Hell!!
Funny after all this time this morning I decided to get all my meds out and got on a site that you can put all meds in and they tell you the effects and what one reacts with the other....BAM right there was I hope my answer.. I take Gabapentin...which was prescribed to me cuz I said I had nerve pain and thats why I needed more pain pills Well this Doctor (not sub doctor) my primary doctor. And she was not a pill mill......the one i was going to that was a pill mill...had been caught and they made all kinds of changes to their office and rules of prescribing narcotics....so they were not giving me what i wanted anymore so i switched doctors....

well the new primary care was no dumby she was not going to give me all these pain pills with out proof of my pain. she wanted to run test get x-rays ect. x-rays came back nothing wrong but some arthritis in lower back.. so where doesn all this nerver pain come from ??? well she gave me gabapentin.

So sorry for all the info about all this but Gabapentin cause swelling in feet ankles and legs....bingo!! so since I really wanted pain pill and got this gabapentin...i'm not going to take it anymore cuz i feel great on the subs other then the swelling..it sucks!!

I found this all out this morning checking what other meds I take side effects where and how they all mix together and ect...

I quess I'm suggesting anyone having the swelling check out everything else before jumping to the conclusion it is the subs. thats what I was doing and well I don't think it is I have no sore mouth or swollen mouth. So it must be something else.

I am drinking more water and my new year is to eat better and the usual.
if anyone is just starting subs and swelling I hope this helps or gets read it is an old post.... but seems to be a common problem that i don't always think it is the subs..

look at everything else first..
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