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Put me in the med change list... I'm nervous about the change though.

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Posted 10/24/2013 3:39 PM (GMT 0)
My doctor asked me to come in after hearing about the discomfort I experienced when trying to add my oxycontin back and he's changing my LA med today. He hinted at Fentanyl and I'm freaking out a bit. I have read so many scary warnings about it but I keep reminding myself that we have quite a few on it here successfully. Were any of you apprehensive at first too?

Tell me I'm overreacting!
Posted 10/24/2013 3:58 PM (GMT 0)
Fentanyl is just like all the others. If used correctly it can be heaven sent...if not it can be dangerous. None of the meds we take are without risk. But you're levelheaded, responsible, and experienced in pain meds. You'll be fine. I used the patches and they really helped my pain. Now I'm on Oxycontin and that works better for me because it doesn't give me the nausea and vomiting the fent. did.

Everyone is different and you'll never know until you try. If you don't like it, you can move on to the next one. But if you don't try it...you could be missing out on the "one" that works!
Posted 10/24/2013 4:02 PM (GMT 0)
It's ok to be nervous starting anew med, in fact I would say its a good thing. It's important that it's a well thought out decision.

Yes, I was nervous when I began fentanyl. Lots of horror stories on how bad it can be, how it's the strongest pain med there is. For me it's been a lifesaver, I was at the stage where everything hurt and my mobility was impaired. It takes time to adjust to it, it can make you feel very sleepy initially. It's worth persevering. I would hope your doctor starts you on a low dose and builds it up very slowly. it's easier that way.

I tried OxyContin for a while but asked to go back to fentanyl, for me it works better and I had less side effects with fentanyl than OxyContin.

It is worth trying, if it's not for you you can go back to what you were on.

Take care and good luck.

Jane
Posted 10/24/2013 4:42 PM (GMT 0)
Thanks, I'm glad I'm not the only one who's been nervous about it. I read that if it falls off and my dog or kid picks it up it can be deadly, that makes me nervous. And when I tried Butrans I would fall asleep at the drop of a hat and this is much stronger so that scares me too.

Thanks to both of you for helping me talk about my fears and easing them.
Posted 10/24/2013 5:00 PM (GMT 0)
Fentanyl can be a very effective pain med. If you have trouble getting it to stick get some Tegaderm and you will not have to worry anymore. Tegaderm looks like the clear adhesive they put over an IV and let me tell you it will stick. I got in the poll and did not have to worry.

The only thing you need to watch is getting hot & causing it to release too much medication. Stay out of the sun, no hot baths, no hot showers, nothing that will increase your body temperature and you will be fine.

Susie
Posted 10/24/2013 5:03 PM (GMT 0)
Trust me...you'd notice the second it falls off. It's one of those things where you're always *aware* of it's placement. You feel it on you whereever it is.

All of these medications are deadly to kids and pets. You take precautions to put them where the unused ones cant be reached, and the used up ones are supposed to be flushed per the instructions, so they dont end up in the trash bin.

When I used them, I would literally take the new patch into the bathroom with me, take off the old one, flush it, and put the new one on right there in the bathroom.
Posted 10/24/2013 7:00 PM (GMT 0)
I just left and he put me on the 25 patch. That's a great idea about flushing it immediately, I'm definitely going to do that.

Susie, I'm glad you told me the warning about baths. I love taking baths. Guess I'll be cutting them out now though. I sure hope this works well. :-(
Posted 10/24/2013 8:56 PM (GMT 0)
You can take a bath, depending on where you end up placing your patch. For instance, if its on your upper arm.

It's all about temperature. You don't want a really HOT bath, or shower, and no hot tubs or saunas and you should try not to be out in the sun for very long, especially if its hot out. The rise in body temp causes the med to release quicker.

The patch can even get wet. You can swim with them, shower, etc. You'll learn as you go what works for you and what doesnt.
Posted 10/24/2013 10:30 PM (GMT 0)
if you can make it stick to you for 3 days your good to go. i have used the tegaderm patches over them. 3M might be who makes the tegaderm. Fentanyl is stronger than any drug in any pill available. be careful. i have seen mauy people wear 3 100mcg patches every 48 or 72 hrs. i got up to total of 2 100mcg patches once and it was strong, powerful, too much. used 2 75mcg a while and they work. with me i say taking bathes or showers is out of the question unless in between patches, it builds up in your fat anyway so it is still going in when you remove it around 12 hrs.
Posted 10/25/2013 11:46 AM (GMT 0)
When I was on the patch, I would take warm baths, not really hot ones in between my patch changes - which were every two days.

My warm is probably someone else's hot. When I say really hot, that is when it would make my skin turn red, LOL! I would take bath in between the patch change. Yes, there is still some of the med in your skin, but the temperature change problems happen most often when the patch is actually on your skin and the temperature of your body goes up. That causes the medication in the patch to "dump" faster into your body.

I also took my showers in between the patch change also. I had problems using tegaderm with my skin, it is very sensitive. I also sometimes got a rash using the patches for a few days after taking the patches off. I would just using a healing skin lotion over the rash and it would always go away. Just to let you know in case you encounter any problems such as these.

Good luck with your med change!
Trudy
Posted 10/25/2013 1:56 PM (GMT 0)
Hi All! Thanks for the advice. My pain levels are very, very low! I feel like a new woman. The sides look like they may be wearing away but from what I read online this is just a sign that the medication is being used up and its perfectly normal. The only side effect I've noticed is that I could not sleep last night... Not even with my Elavil! Has anyone else experienced this? I'm sure it will go away after I'm used to it but any tricks in the meantime are appreciated!
Posted 10/25/2013 2:46 PM (GMT 0)
I have been on Fentanyl patches for a full 2 years plus now.

I have not had a single patch every fall off or come loose. A lot of that depends on how much you sweat, or if you have oily skin. Don't use hand creams or use perfumey soaps in the area where you wish to use the patch. If you have one come loose, you can even use what nurses call "pink" tape, that stuff really sticks well.

I have also never been constipated by using them, but then I seem to be immune to that on any strong pain meds.

I am currently back to 100 mgm every 48 hours. I put my patch on my upper arm, just below the edge of my shoulder, as it keeps it out of the way, and isn't in a place that is constantly bending.

Biggest warning has been told here several times: HEAT. Stay out of direct sun if possible, stay out of high tempertures directly. My dr. insists, zero baths, zero hot tub, and no long hot showers. I had that one episode earlier, months ago, where I got overheated walking and passed out. I know the risk is real first hand, doctor told me it could have been fatal.

I always flush mine down the toilet, like instructed. Even the used patches are valuable to drug users and can be eaten or ground up.

I take my empty boxes, packaging, etc and keep it in a single trash bag. My wife, a nurse, then takes it to her long care facility, and disposes of it according to DEHEC regulations. You don't want your trash man or others seeing the empty Fentanyl material in your trash. Could be dangerous if they come back to your house if looking for it.

Also, I never put on a new one, until the old one is off first, then I do a double check. I mark all my patch packages with a marker, from 1 to 15, in my case. Then I map out those numbers on the calendar on my computer. After I take the right package for the right day, I change the status to "done".

May sound like overkill, but while Fentanyl is a godsend and a great pain killer, it can also kill you easily if you don't take proper precautions.

I hope you do well with it.

David
Posted 10/25/2013 5:59 PM (GMT 0)
Hi David! I'm so glad you chimed in. You are actually one of the people who I thought about when I was freaking myself out about the medication. I actually had bad dreams about it I was so nervous. Then I thought about you and how it has helped you very much. If I have any questions would you mind if I ask you for your input? My patch doesn't look like its going to come off... Its just the outsides don't look like they are in contact with the skin fully. Does that make sense? LoL

Please don't judge my family for what I'm about to say. But, A huge reason I have been so afraid is because I have an uncle who has been on them for ten years but he eats them. He was a heavy alcoholic when I was growing up and about 15 years ago he was in a bad motorcycle accident that destroyed his legs and back. He was originally on oxycontin and chewed them (before the protective time release mechanism was added) and his doctor put him on Fentanyl to try to curb his ability to abuse medication. He claimed it was because the pain wasn't controllable unless he ate them but we all know he's just moved from one addiction to another. He's on 150 MCG every 48 hours. He wears the 100 patch and then every other day sticks the 50 between his gums and cheek. He is impossible to be around on these days. To prevent nodding off he moves from one task to another and won't quit talking and being annoying as can be. We actually call it new patch day and after being around him for two minutes you can tell if its patch day or not. My aunt cries herself to sleep some nights because of this. She's tried to talk to his doctors but they say if he stops cold turkey, he's at risk for a seizure.

Rationally, I know it is the abuse of the med that makes him this way. But for so long, I've disliked the fentanyl because of it. There's a heavy negative memory associated with it so I've been worried about ever being put on it. When the doctor mentioned fentanyl even my son asked "you aren't going to become like Uncle Eddie, right?" Because our whole family sees this.

I'm sorry to have written so much but you guys are like family so I wanted to tell you the whole story. I can't ask him questions because he doesn't use them correctly and he's run out once or twice (ended up in the hospital both times) and I don't want him to know I am being prescribed them or anything else for that matter. He needs inpatient treatment but he won't get it. He almost got arrested at my grandfathers funeral because he was acting so erratic in front of security at the funeral home.

Thank you to anyone who read all that. And David (or anyone else on them) if you have any tips or tricks I should know... I'd be much obliged! Like if anyone can tell me how long the sleeplessness continued and stuff like that.

Thank you all! You're the best!
Posted 10/25/2013 7:30 PM (GMT 0)
QT,

The big thing here is, as you identified, your uncle is chewing the pads, where-as you are using them correctly.

I know how scary this is when you've seen it affect your family in such drastic ways.

I think you are very smart about keeping your Rx's private. 

You sound like you're doing all of this quite responsibly, and that bodes well for you.

Posted 10/25/2013 7:33 PM (GMT 0)
I've got a nephew that would take all of my medicine if he could get his hands on it without any concern for me.

We've all got family and the bad comes with the good.

Nobody in my family knows I'm a patient of a Pain Management Doctor.

I hope the Fentanyl patch works for you,
Rick
Posted 10/25/2013 8:52 PM (GMT 0)
Thanks Merrida and Rick. I know that no family is perfect but its very embarrassing. If you all could see him in person you would understand how bad he is on patch day. The day between patches he just stays in bed because he's in so much pain he doesn't want to get up. I feel the worst for my aunt because she has medical issues too but she can't worry about herself because he needs to be babysat.
Posted 10/25/2013 11:12 PM (GMT 0)
Wow, I cannot believe the drs are still rxing it to him if his wife has told them how he is abusing the medication. You know that is malpractice on their part.

I can understand why you feel as you do but with his history he will abuse any pain medication he can get his hands on.

For you the point we were trying to make with showering or a tub bath is not to take hot ones that will increase your body temperature. You can shower or bathe just not real hot ones.

Susie
Posted 10/26/2013 12:05 AM (GMT 0)
Hi Qty I've been on the Fentanyl patch for several years now. I've lost track as to exactly how many. I can't think of anything else to add at the moment, except to be careful, and don't get too hot. Feel free to ask any questions that you have.

As far as the sleeplessness, the patches don't affect me in that way. Maybe someone else can help you with that. I really hope the patches work well for you. Take care.

love and hugs
Loretta
Posted 10/26/2013 1:26 AM (GMT 0)
To clarify, my aunt hasn't told then that he eats them (I think she should) she has just asked then to take him off the patches. They won't even attempt to wean him because he is continually losing weight and they are afraid of the risk of seizures.

I think she should be honest with them but she is afraid of the repercussions of blowing his cover. She says she just wants him to run out and end up in the hospital again so they figure it out and he can't blame her. To be honest, if I find out who his doctor is... I'm going to do an anonymous phone call to the office. He is miserable to be around and there are days I feel I hate him. I know that's a strong word but its not fair to my aunt who is taking care of both of them, her sick father and granddaughter. She needs two separate surgeries but is afraid that no one will help with her dad and Alissa (granddaughter) if she is recovering from a surgery.

I didn't realize how therapeutic it is to write this all down. I'm sorry for rambling but I really resent the position he has put her in. When he's high and stupid, I'll tell it to him straight and he starts apologizing to her but he doesn't change his behaviors. At this point she's just enabling the behavior herself. Because she could make sure that the doctor knows the full story but she's afraid to say anything.

Okay, I'll stop talking now. I still feel amazing. The ironic part is that I feel well enough to exercise but I can't because it might raise my body temperature! LoL.
Posted 10/26/2013 10:46 AM (GMT 0)
Linds your Aunt doesn't have to be the one to make that call!! Nobody wants the guilt of having to get a legitimate CPer taken off meds but I also would not want to carry the guilt of his death with me either! It will come!! Its not if but when.

The Dr has a right to know as well Linds. Every time they lose a patient to accidental or intentional overdose that's put into that Drs record as well as the stats on fentenyl at the FDA and DEA. Those are numbers that determine the category of abuse that eventually gets drugs rescheduled or removed from the market. Those numbers for a Dr can lead to sanctioning of his ability to prescribe narcotics and that's far reaching and could effect every CP patient he has that take their meds as prescribed.

He's not treating his pain Linds he's feeding his need to be high. Its a sad situation but one that doesn't need to be ignored by everyone, if this was your son Lindsey wouldn't you want him stopped? Before you stand at his funeral and ask yourself why?

Every one blames the Drs in these situations but yet an entire family will know something like this is taking place and does nothing?

Im not bashing your family or you sweety, I think you know ignoring this behavior is wrong, maybe even dead wrong and that's why it was such a relief to share it here.
Posted 10/26/2013 11:30 AM (GMT 0)
Oh yes, Vickie! I'm not sure if you read my last comment but if I find out who his doctor is, I'm calling and tell him/her myself!
Posted 10/26/2013 11:40 AM (GMT 0)
And I don't feel bashed... I think she should tell his doctors. I think its ridiculous that she doesn't. And if it were my son or husband, and I found out what was going on, I'd sing like a canary. I tell her she's enabling him at this point and she's just as responsible. We don't go over to their home anymore because I can't handle being around him and I sound like a broken record telling her that she can do something. I don't want my kids to even see the enabling behavior, much less the addictive and medication abusing behavior. Neither of them is setting the kind of example I want my kids to see.

Is there a way I can find out who the doctor is? They won't tell me and they don't leave bottles laying around where I can get the name. My cousin, their daughter, called the police and he showed the police the prescription and said the abuse claim was untrue and the police did nothing. He even passes med counts because he eats the patch on the day he's supposed to change them over. I know my aunt is afraid of him hurting her or himself... But he already IS! That's the point she doesn't understand.

How would you guys find out how to turn him in? If I call the doctor, there's even a chance he/she won't take my word over the patient that he/she's seen all this time.
Posted 10/26/2013 12:28 PM (GMT 0)
If you do manage to find out who the doctor is, trust me, the doctor will listen to you and watch the patient much more carefully. That, in itself will probably get him caught.

I have no idea how you could find out who the doctor is, other than following them when he has a doctor appt. But they probably don't tell that info either.

Maybe the cousin, daughter knows who the doctor is. Maybe the police wrote down the info or would have remembered it since the man showed them the RX.

Please don't be afraid of the fentanyl because of what you have witnessed. As long as you use your RX as stated by your doc you will be fine. Since you have noticed that the edges seem to not be sticking to your skin, I would say that you need to get some tegaderm and put over the patch, that will definitely keep it attached to your skin.

Trudy
Posted 10/26/2013 6:10 PM (GMT 0)
hey QT, just saying good luck with the patch, sounds like the transition is going well. Another heat waring thing, I've been on a fent patch for a number of years and never had any real issues with hot showers but electric blankets have screwed me up a couple times.

In winter I often sleep on top of one (also have one on the couch, anything to keep bones/joints warm) and that's occasionally dried out the adhesive. Finding your patch all rolled up and stuck to your clothing is not a pleasant sight, tegaderms stop that from happening plus help prevent water damage, can't recommend using them enough. Good luck going forward!
Posted 10/26/2013 6:12 PM (GMT 0)
Thank you! I love electric blankets so I'm glad you brought that up. I'm so scared that my body temperature is going to rise because of my hot flashes. I wonder if they can cause medication to dump?
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