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



Pain Management Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 03-21-2010, 04:31 PM   #1
Junior Member
(female)
 
Join Date: Mar 2010
Posts: 20
CrochetFerret HB User
Problems with my Fentanyl patch and hope someone can help

New to the board and hoping and praying someone can help.

I have been on the Fentanyl patch for almost 3 years, 75 mcg, change every 72 hours for 3 collapsed discs in my lower back; no longer a candidate for surgery.

Over the past year I have been having problems off and on with what I thought were "bad patches" meaning the patch was not working and I was going into withdrawals which anyone on Fentanyl knows what kind of a hell that is. To make a long story short, it was not a problem with the patch, it was me. First we thought was a hormonal problem, had complete hysterectomy a number of years ago but have been on continuous hormonal replacement. I get hot and sweaty at the drop of a hat, just vacuuming the floor with my lightweight Oreck vacuum will have me in a profuse sweat after about 10 minutes and my body temp will dramatically drop; a couple days ago it dropped to 94.8 when I was extremely hot and sweaty. Hubby is always complaining of how cold I keep the house but I am always burning up. The profuse sweating is causing a problem with my Mylan patch, the oxidants in my sweat is clogging up the patch and essentially shutting the patch off. Just last week I went through a horrendous 48 hour period of withdrawal symptoms before I realized what was happening to me. DUH. (Have had a complete hormone work up, I am on a whopping amount of hormone replacement and it has not made one ounce of difference. Next step is with an endocrinologist to do a special MRI looking for a tumor of the hypothalamus; the area of the brain that regulates body temp, breathing, blood pressure and other things)

I saw my pain doctor on Friday and I told him I wanted to get on something else until we can get this problem sorted out. My doctor's partner put me on Opana 15 mgs to take twice a day. I was to take off the Fentanyl patch, leave it off for a full 24 hours before starting the Opana. I took off the patch approximately 4 PM on Friday and started the Opana about 7:30 AM on Saturday, not a full 24 hours but I was in horrendous pain and already going into withdrawals. The withdrawal symptoms continued to get worse and getting worse very fast to the point I couldn't stand it anymore. I called the service for my pain doctor and they got in touch with him and he called me in less than 10 minutes. I told him what was happening, he told me I was obviously in severe withdrawal and to stop the Opana and put a Fentanyl patch back on. I did just that and within an hour I could feel the symptoms begin to subside.

I would like to stay with the Fentanyl, I like the convenience of it, it works well for me controlling the pain or it had been working well until the past year. Is there another form of Fentanyl I can go on until we can get all this sorted out. I am getting a referral this week with an endocrinologist but we are not going to get any answers overnight. And with the hell I have already been through with the Fentanyl withdrawal symptoms, I can't keep going through that; last week when I had that particularly bad round of it, I was wishing someone would just shoot me, I was walking the floor screaming and in horrendous pain.

Please, I need some answers. Would one of the other Fentanyl patches work better?? I am on the Mylan brand but would be willing to try one of the other name brands of it. What about the Fentanyl lollipop?? How well does that work??

 
Sponsors Lightbulb
   
Old 03-21-2010, 04:37 PM   #2
Veteran
(female)
 
Join Date: Nov 2009
Location: New England
Posts: 499
Madison104 HB UserMadison104 HB UserMadison104 HB User
Re: Problems with my Fentanyl patch and hope someone can help

Oh My God Crochet! you have been through SO much!! It does sound like you have more than one thing going on. I too am on hormone therapy, and sometimes I am good and sometimes my heat/cold fluxuates within 5 min.!!! It drives me crazy! I DO think the opana mg was WAY too low in comparison to the fetn. patch!! I take 20 mgs, 2x a day with percocet for breakthrough pain. I cannot IMAGINE that kind of drop that you experienced. I would also get another blood panel done for your hormone levels. IF you have too much estrogen you will get hot because of that estrogen dominance.
I sometimes rub on a bit of natural progesterone to even that out.

You have my thoughts and prayers that you find your answers soon. Again I am so sorry for your suffering Others, I am sure will come along with good information for you. We are here to listen and to try to help ((you))
Madison

 
Old 03-21-2010, 05:09 PM   #3
Junior Member
(female)
 
Join Date: Mar 2010
Posts: 20
CrochetFerret HB User
Re: Problems with my Fentanyl patch and hope someone can help

Since the hysterectomy I was on the Estroderm patch 0.1 mg and that always took care of it. Then my family doctor added Premarin 0.625 mg take daily and then added Premarin 1.125 mg take daily. I then added the Cohosh (OTC) AM and PM formula and nothing, zip, does about as much good as taking a drink of water.

Family doctor sent me to an OB/GYN for a work-up, and even with all the Estrogen I am on, one of my hormone levels was .1 when the normal level was anything between 20 and 30, barely traceable in my blood. My blood work was sent to a pharmacy that compounds the medicine on site, tailor-made for the patient and this has done NOTHING. I wake up at night, drenched, top sheet soaked, fitted sheet soaked, my hair is soaking wet, I get out of bed and go get in the coldest shower I can stand and stand there letting the cold water pound down on my head.

So as you can imagine all this sweating is wrecking havoic with my Fentanyl patch. I am so miserable, I can't begin to stress how miserable my life is. Before all this, life was almost unbearable with the back pain and now add in all this new mess and it is just about more than I can bear.

I have things here at home I need to do, everything I go to do, I take my time, I don't go at anything in a hurried manner, I try to keep from getting too hot plus with my back pain the way it is, I don't go at anything in a hurried manner.

Tell me who in their right mind would want to go on living this way?? I have nothing but days of misery that just stretch from one 24 hour period of hell into another.

 
Old 03-21-2010, 05:37 PM   #4
Veteran
(female)
 
Join Date: Nov 2009
Location: New England
Posts: 499
Madison104 HB UserMadison104 HB UserMadison104 HB User
Re: Problems with my Fentanyl patch and hope someone can help

Crochet, I wanted to respond before I settled in for the night (rib contusions lots of pain) BUT please, hold on and hang in there.

I can tell you sadly that I have had some horrific times, and I am not just saying that. I know that distress when we don't think we can go on ONE more moment. I feel so, SO bad for you from my heart. Keep believing that someone will find the answer. Something is causing you to be off balance.

For example..just so you know about my compassion I had Grade 1 cancer (vaginal) about 3 years ago. The doctor used this cream that was supposed to help me. She burned the vaginal area so bad that I had blisters and I could not wear clothes for a year. Also, I was over 2 years for the burning to subside. I remember wondering how I could go on one more day. Three years later I am 85 percent better.

Please do keep us posted. I know the hell of hot flashes alone, let alone your complications!!!!!!! I would think something strong that would be equal to your pain patch would be better than the patches not working due to all of your sweating. I would imagine your hormone patch is ineffective as well!!!

I will check in tomorrow to see how you are doing. IF you can see about and try meditation, it will help some. That probably sounds ridiculous, but if I can calm myself and deep breath it helps a wee bit, especially when I used to wake up in the middle of the night wanting to scream. Pain and hot flashes send me right into an anxiety attack.
Prayers for you....really. Again, I feel terrible for your suffering.
Madison

 
Old 03-21-2010, 05:39 PM   #5
Veteran
(female)
 
bullymom's Avatar
 
Join Date: Feb 2009
Posts: 343
bullymom HB Userbullymom HB User
Re: Problems with my Fentanyl patch and hope someone can help

Crochet-ferret,

I am so sorry for what you're going through and when I say I can relate.... I mean that. I am also on the patch, I use the brand name duragesic patch but have tried many of the others. Mylan is my least favorite. The new duragesic patches are now a matrix design like the mylan, but they seem to stay on very well. Now the sweats. I went through the exact same symptoms for about 6 years. I almost quit my job because I simply could not tolerate the office being the temperature where everyone else was comfortable. We managed to deal with that little problem, but it was humiliating having to tell everyone who came in that needed to dress "warmly" or bring a blanket. About a year ago my OB changed me from prempro to activella. My life has completely changed. I still sweat when its very humid and I am being active, but I don't have near the problems I used to have. I really feel, once they get your hormones leveled out you will see a difference. Having said that, I have read and heard from many cprs, that the patch is notorious for causing one to sweat. I know patients who have had to come off of it due to that problem. Sadly, the lollipop, known as actiq is NOT a long acting pain med. It is for breakthrough pain only. It tells you on the very first page of information that you cannot substitute actiq with other fentanyl products. To do so can cause overdose and death. There are some other LA meds that you can switch over to but it must be done very carefully and follow your pain docs orders to a T.

I havent been much help, but I did want to jump in and say I feel for you!!
When you get cold you can always put on another layer, but when you get hot like that, nothing seems to help, you feel like you are burning up from the inside out. Also, I no longer have to get up and change the sheets in the middle of the night. I wish my doc had changed my hormones years ago. Good luck with your upcoming appointments and I hope they find a way to make you more comfortable.

I have also heard that you're not supposed to use the natural forms of estrogen such as cohash when you are using the rx hormones. Don't know if thats true, just wanted to mention it.

Please hang in there!!! There is a solution for all of this... we just have to find it. Rest well, and keep us posted on how your doing.

Hugs from Bullymom

Last edited by bullymom; 03-21-2010 at 05:45 PM. Reason: added info

 
Old 03-21-2010, 05:50 PM   #6
Junior Member
(female)
 
Join Date: Mar 2010
Posts: 20
CrochetFerret HB User
Re: Problems with my Fentanyl patch and hope someone can help

At time I literally feel like I am loosing my mind but I have physical symptoms to back up what I am saying. For someone to say it feels hot in here when everyone else is comfortable but stick a thermometer in my mouth and my temp will be anything from 94.8 - 97.2 so there is an imbalance somewhere in my body. I cannot live with all this much longer. I am feeling very desperate and feeling such a crushing sense of not being able to continue.

 
Old 03-21-2010, 06:36 PM   #7
Veteran
(female)
 
bullymom's Avatar
 
Join Date: Feb 2009
Posts: 343
bullymom HB Userbullymom HB User
Re: Problems with my Fentanyl patch and hope someone can help

Oh Hon, you are breaking my heart I can't stand to see anyone suffer. Lets break this down a little. For tonight, we focus in getting a goods nights sleep. Try not to think about tomorrow just yet. If you have not been sleeping with a fan on, try that. Wear summer pj's or sleep naked if you want to. Keep a cool wash cloth or ice pack on your night table so you can reach over and grab it if you need to. Lets just get through tonight.

Tomorrow, call your regular pain doctor and let him/her know that you need an appointment as soon as possible. The endocrine doc won't be able to help overnight, your probably right about that. But lets at least get busy working on controlling your pain and the horrid withdrawl symptoms you have had to endure. When tomorrow gets here..... we worry about that and that only. Try not to see this as something you ARE going to have to live with the rest of your life. They WILL find a way to help you. Slow deep breaths, focus on the next hour if you have too. Fear of the unknown is paralyzing and when you are suffering and you don't know why it's completely overwhelming. Please hold on. Come on here as often as you need to. We care very much about you and want to help you get through this.

Rest well, don't worry about anything except getting some sleep for tonight.. Let your mind slow down and rest a bit. I'm putting you on my prayer list tonight.

Bullymom

 
Old 03-21-2010, 06:47 PM   #8
Veteran
(female)
 
bullymom's Avatar
 
Join Date: Feb 2009
Posts: 343
bullymom HB Userbullymom HB User
Re: Problems with my Fentanyl patch and hope someone can help

Crochet

One more thing I remembered. One of our regular members here had to come off her fentanyl patch due to the very same thing, sweating. Her pain doc is wonderful and he switched her to oral morphine and she say's it's the best LA pain reliever she has ever tried. I don't know how her taper was done but it might be worth asking your doctor how he feels about oral morphine, long acting.

Bullymom

 
Old 03-21-2010, 07:10 PM   #9
Senior Veteran
(female)
 
Join Date: Jan 2002
Posts: 2,369
AnnD HB UserAnnD HB User
Re: Problems with my Fentanyl patch and hope someone can help

My husband has been on the fentanyl patch for 4+years. He has been on all types they make and all kinds of mcg's. He sweats like a pig without doing much of anything. It is simply the side effect of the patch. Sweating is also the side effect of oral narcotics like Oxycodone which he is also on so all he has to do is get dressed and he is sweating. It isn't fun. I can tell you it doesn't have a thing to do with your hormones level and no matter how much you adjust those medicines you will sweat. As long as you are on the pain patch no matter what brand you are going to sweat really bad. sorry.

 
Old 03-21-2010, 07:50 PM   #10
Senior Veteran
(female)
 
Join Date: Mar 2009
Location: East Coast, VA, USA
Posts: 556
Ilovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB User
Re: Problems with my Fentanyl patch and hope someone can help

I could not take the Fentanyl Patches due to the hot showers I like to take as it released too much medicine in my system at once.and wound up in the ER one morning..as well as too uncomfortable during the hot summer months...

I also wanted to switch and have more control over my meds and take them more when needed....I have both a Long Acting medicine..which is my MS Contin...and then OxyIR for Break Through...my prescriptions are written in such a way each month that I have flexibility to take up to a certain amount each day....some days need that..and others need less...

Neither one of these meds makes me sweat at all...I also had tried Oxycontin awhile back before they lost their generic and never sweated with that either...so I think it's individual for all of us and some have stronger reactions that others with certain meds...

I do think that your homone levels for us women can wreak havoc on the patch as you are seeing and agree that hopefully you can see your Dr. tomorrow to find a plan that works for you best..

It took me a few years to find the med combo that has worked the best for me..as well as adding all the other modalities (non medicinal) to help lower my pain...There is never just one magic pill unfortunately..it takes many things that all combined can get us to a livable place each day with our pain...

I do wish you the best and good luck at the Dr..

 
Old 03-22-2010, 11:39 AM   #11
Veteran
(female)
 
bullymom's Avatar
 
Join Date: Feb 2009
Posts: 343
bullymom HB Userbullymom HB User
Re: Problems with my Fentanyl patch and hope someone can help

Quote:
Originally Posted by AnnD View Post
It is simply the side effect of the patch.... Sweating is also the side effect of oral narcotics ... I can tell you it doesn't have a thing to do with your hormones level and no matter how much you adjust those medicines you will sweat. As long as you are on the pain patch no matter what brand you are going to sweat really bad. sorry.
I will have to respectfuly disagree with Anns above statement. As I said in my previous post, I had a significant decrease in the amount of sweating I had after my hormones were correctly regulated. While I am not absolutely certain that hormones are the reason for Crochet's profuse sweating, I am convinced that her hormone levels, as indicated by her lab results, are not where they should be. Hormones play a huge roll in regulating all types of bodily functions.

I completely agree with freetowns post. Everyone is different and reactions to medications vary from person to person.

I hope you had a good night Crochet and let us know how the day goes ok??

Bullymom

 
Old 03-23-2010, 08:50 PM   #12
Junior Member
(female)
 
Join Date: Mar 2010
Posts: 20
CrochetFerret HB User
Re: Problems with my Fentanyl patch and hope someone can help

Spoke withe nurse at the pain doc yesterday morning and doc doesn't have a problem about switching me back to the Fentanyl patch and the Percocet for BT pain thank goodness so I will be getting my refill scripts for them both this Friday and I am to turn in the Opana I didn't take. The Opana 15 mgs X two daily did absolutely NOTHING for my pain, never felt a thing, might as well have drank a bottle of cold water and got about as much pain relief from it.

I am trying to get an appt with an endocrine doc ASAP. Called one yesterday morning only to be told I had to have a referral, called family doc to get referral but because he had passed me off to the OB/GYN for hormone problems, referral would have to come from him. Called his office to ask for the referral only to be told by the nurse she wasn't sure if he would want to even bother getting the referral for me or not. Wasn't too thrilled with her attitude, I have insurance, this was not costing this woman a dime, that should be my choice to ask for a referral and/or a second opinion if I felt I needed it. Finding I am FAST running out of patience with things these days. I feel like no one is listening to me or has a clue to the hell I am going through.

Last two nights, I felt I was wasting my time going to bed. I sleep in a summer-weight T-shirt and cotton jammie shorts, a fan about 3 feet away blowing right on me, light quilt on the bed. Woke up drenched, even my pillow was soaked and actually got very little sleep, just sort of cat-napped off and on. My hair is long, 3/4 the way to my waist and I am within a gnat's arse of getting it cut off short.

OB/GYN doc's office finally called back and said they would get the referral for me but was told by the endocrine doc's office it would be first part of May before they could see me.

I can remember going through a time similar to this several years ago but not nearly this severe nor did it last all that long and it finally went away on its own.

With the research I have been doing about all this, I keep finding mention of a connection with hypothalmic disorders and fibromyalgia which I also have. I have read more than one article defining fibromyalgia as the body basically going into hyper-sensitivity and the hypothalamus doing sort of the same thing but there is no cure for it, nothing can be done about it, once it goes out of whack, that is basically it, it is whacked for the rest of your life.

I have got to get some help and soon, I can't keep on this way. I don't have a life of any quality any longer, it is just one long day stretching into another of pain and misery.

 
Old 03-24-2010, 08:12 AM   #13
Junior Member
(male)
 
Join Date: Mar 2010
Location: Tennessee
Posts: 11
deisinger HB User
Re: Problems with my Fentanyl patch and hope someone can help

I to was on the patch for a long time and got tired of the hassle, not sticking...so my PM doc switched me over the morphine sulphate ER. Or MS Cotin. It is working really well. Just make sure they do the conversion right. I was on 75micograms every 48 hours and my morphine dose per day is 120mg. Hope this helps.

 
Old 03-24-2010, 12:53 PM   #14
Veteran
(female)
 
bullymom's Avatar
 
Join Date: Feb 2009
Posts: 343
bullymom HB Userbullymom HB User
Re: Problems with my Fentanyl patch and hope someone can help

Quote:
Originally Posted by deisinger View Post
I to was on the patch for a long time and got tired of the hassle, not sticking...so my PM doc switched me over the morphine sulphate ER. Or MS Cotin. It is working really well. Just make sure they do the conversion right. I was on 75micograms every 48 hours and my morphine dose per day is 120mg. Hope this helps.
Thanks for leaving that information deisinger. I have been wondering about that exact same thing. Conversion from fentenyl to something else. I have two quick questions about it if thats ok? Did you have ANY problems with wd symptoms as you switched over?? Is the oral morphine, or mscontin expensive? Do they offer generics for both/either? The summers are a bit tricky for me with the patch with humidity and all and I am on the exact same dose as you, 75mcg every 48 hours.


CrochetF.... I'm glad to hear your getting back on the patch at least from the wd aspects of your problems. Maybe you could ask your doc on Friday when you go for your appointment what he/she thinks of the oral MS.
I agree with your concerns regarding the hypothalmus. Interesting that you had similar symptoms in the past and they resolved on their own. Maybe that will happen again That would be awesome. Hang in there kiddo, things will get better. I am very interested to find out what the endocrine doc has to say about all of this. I'm not so sure you would like being bald> Hang on to that hair a bit longer. LOL I am not trying to make light of your symptoms, I know you are in a living hell right now. Just wanted to get a smile from you.

Bullymom

 
Old 03-24-2010, 03:30 PM   #15
Senior Veteran
(female)
 
Join Date: Mar 2009
Location: East Coast, VA, USA
Posts: 556
Ilovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB UserIlovemycutedog HB User
Re: Problems with my Fentanyl patch and hope someone can help

I just wanted to throw in some info about the MS Contin....which is the same thing as Morphine Sulfate ER (that is the generic name)

It is one of the chepest generic meds to be on since I don't have insurance right now...I go to Sams Club...for which the Pharmacy you do NOT need a membership...

I called around..which I would suggest doing, to all the pharmacies to ask them their cost for generic in your area...

I am on both the 30mg ER and the 15mg ER (I have Oxy IR 5mg for break through) so I have flexibility with my prescriptions to take the max prescribed to me on bad days...but take less on most days...

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
fentanyl patch not lasting 72 hrs.. due to menopause noescape Chronic Pain 52 02-14-2012 05:12 PM
Possible Fentanyl Patch Overdose superstressed Pain Management 27 12-05-2010 09:29 PM
New here - cancer patient w/questions on Fentanyl patch ray of light Chronic Pain 9 03-08-2010 09:14 PM
New to Board, New to PM and Long Lasting Pain Meds - Fentanyl New To CP Pain Management 64 06-19-2009 11:44 PM
"Deep Thoughts by Onyxgates" re Fentanyl Patch onyxgates Pain Management 6 04-17-2009 09:55 PM




Thread Tools

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

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




Sign Up Today!

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

I want my free account

All times are GMT -7. The time now is 04:11 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!