What do you do for bt pain?

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golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 2/3/2010 4:51 PM (GMT -7)   
 k I'm new to the fentanyl patches, I'm on a 25mcg patch as well as a 12 mcg patch and they work ok for resting pain. Sort of push the pain into the background, I feel like its in the next room, not my main focus or something but when I'm active after awhile the pain has jumped back in my face. What do you do?
 
Do I need a stronger patch? Do I need something for this breakthrough pain or do I add something else? My doc was talking about seizure meds but this sounds heavy duty?
 
I'm sort of surprised at how pathetic the fentanyl is actually, I've been on the codeine for so long, I just thought switching to opiates would work better but they're not as good! I'm not allowed to stay on the codeine though as its been too long and they are no good for my liver.
 
Any advice would be much appreciated.
 
I'm in the waiting game for my RA treatment as I have failed the big guns, so now I'm dealing with the pain as  a seperate issue. My rheumy has given me the green light to do this as the chronic pain is getting too much for me to cope with. I won't explain further as I know you've all been there. My GP has referred me to a pain clinic but I don't know how long that will be before I hear from them. Or what it will cost me.
eyes
Help, golitho

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 2/3/2010 6:31 PM (GMT -7)   
Hey there,

**Just my thoughts and suggestions...not a Dr.***

Fentanyl patches are one of the strongest meds available. I was actually extremely surprised that your Dr. went from codeine to this medicine...Not that I don't think you have the pain to warrant it...but this medicine is supposed to only be prescribed to opiate tolerant patients...
It actual states that opiate tolerant is to have been taking a minimum of 60mg of Morphine daily for more than a few weeks without this alleviating the pain properly..and overdose can occur by not following this guidline..

and the natural progression from codeine is to Norco/Vicoden, then Percocet, then to a LA med like Oxycontin or Morphine , then to the patch starting with a 12mcg or Methadone.

Again...I am not saying that your pain is not needing a strong medicine to help...just the way this Dr. is going about it seems way too aggressive and skipping some steps..

This particular medicine takes time to build up in your system...as in your blood plasma levels..That is why it is prescribed to be changed every 72 hours. It has a long half life.

I'm not sure how many days you have been on this now but it can take a few weeks to a month to really give a new medication time to let your body adjust unless someone is having life threatening side effects.

A good BT medicine that I use is Oxy IR 5 mg as it doesn't have any Tylenol to hurt your liver, and a low enough dose to have control over your dosage. My Dr. prescribes 1-2 every 4 hours as needed...(no more than 8 in a 24 hr. period) which gives me flexiblility when I have good days to not take any...

What other type of medicine (you say seizure med) is he suggesting?

A good regimine in just regards to medicine...for a chronic pain patient...is usually a long acting medicine...a BT med as needed, some sort of muslce relaxer. and possibly an anti-depressant and/or nerve pain med as so many of us have low seratonin levels with our bodies trying to fight pain each day and go through surgeries. As well as some take a sleep aid...there are natural ones or prescription as getting to stage 4 sleep is imperative to restoring our bodies and help us deal with chronic pain.

Now..not that everyone has to have all of these...

For me...I wanted the most possible ways to be flexible with my medicine..my LA medicine is MS Contin...which again..I can still take as needed and can choose none on good days if I want...same with my muscle relaxer..only when needed.

The good part about the patch for those who take it...is the constant release of medicine..which peaks at 20-27 hours...

Please be extremely careful with this medicine...it needs to be worn above the waist...not in any place where you 'sweat' or is rubbing against clothing. Avoid any type of heat...blankets, heating pad or long hot showers and no hot tubs...this could cause an immediate release of the medicine and respiratory failure.

This is not just info from me learning from my Dr. and online research..but I was prescribed this by my Primary Dr. many years ago..She was wonderful and caring and trying to help but did not know much about this medicine..I had not been opiate tolerant at the time...

After applying a 25mcg patch..I took my morning shower...and wound up on the floor..passed out..and rushed to the hospital. It has also been linked to many deaths due to improper dosage/release...

*** I am not trying to scare you away or tell you or others not to take this medicine..It is truly a good medicine when used properly..so I hope I am not misunderstood...just wanting to share my story and information.

Are you currently on a muscle relaxer as well?

If it were me, after a few weeks to a month, if your pain levels are still above a 5 on the pain scale...which is what most PM Dr.s feel is acceptable with a chronic pain patient..than I would suggest adding a BT med and trying that before going higher...

Just my thoughts...certainly NOT a Dr. so please work with him as I certainly hope that this medicine..along with all the other modalities you use, helps keep your pain low...I truly wish and pray for that for all of us!!!

I use this term a lot..but having chronic pain is a marathon...and takes much trial and error and many different things as well as team of people..Dr.s/Pharmacists/Counselor, etc. to keep us at an acceptable level which unfortunately will not be 0 again most likely:(


SB and "the pup who snores loudly"
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha"))
 
ACDF with hardware, allograft bone Nov. 2005
 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Dec 2006
 
PM since 2006

Post Edited (Snowbunny21) : 2/4/2010 4:46:23 AM (GMT-7)


merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 2/3/2010 6:45 PM (GMT -7)   
GOlitho,

Snowbunny is right on! but I agree that the fentanyl- it seems weak. I have a 50mcg patch and take 15 mg oxycodone 3x a day for breakthrough pain. I also take cymbalta and zanaflex a muscle relaxer.

I am still in a lot of pain. I dont think we will ever get rid of all of our pain, but we should be comfortable in our own skin!

I change my patch every 2 days instead of every 3rd day, as I seem to go through the patch a lot faster than the usual person. My temp also runs high.

I definitely think that you have to attack the pain from every angle you can.
with the different types of meds.

good luck with your meds
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Sal1965
New Member


Date Joined Jan 2010
Total Posts : 18
   Posted 2/3/2010 7:16 PM (GMT -7)   
I'm thinking aboutr asking my doctor for Duragesic pain patch, is this the same as Fentanyl? I have taken Darvocet, Vicodin, & Percocet, none of them come close to relieving my pain. I'm in stage 4 Osteonecrosis in both hips.

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 2/3/2010 8:25 PM (GMT -7)   
I hope that even though you all don't know me yet...that my sometimes 'direct' posts are truly about your well being and any experience that I have had with something that might help you.

I think that the Patch can be a very effective pain reliever...and yes...in the long run...most people end up changing it every 42 hrs and having a BT med when needed...It's just the 'building up process' that I was concerned about. Sometimes people only see the number 12 or 25 and think it is really low, but with fentanyl, that is in mcg so it's very potent.

I do hope that it works well for you and others who are thinking about it...We all deserve to have our pain managed well and live the best lives we can with CP:)


SB and "the pup who snores loudly"
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha"))
 
ACDF with hardware, allograft bone Nov. 2005
 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Dec 2006
 
PM since 2006

Post Edited (Snowbunny21) : 2/3/2010 8:28:06 PM (GMT-7)


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/3/2010 10:04 PM (GMT -7)   
Golitho,

I know you know that everyone is different, but I thought I'd share that I didn't have much luck with the fentanyl either. I was on it for a few months at 150 mcg per 3 days & if I didn't see myself wearing the patch/know I'd put it on, I never would have known. It didn't help my pain at all or give me any side effects (fortunately). It just did nothing. But then again I have a very very high tolerance for pain meds & I've yet to find a pain med that makes a real significant difference. My doctor says that in all his years of practice he's never seen anyone as resistant to pain meds as me. However, I'd say that out of all the pain meds I've been on (the list is long) the fentanyl worked the least for me. Maybe this med just doesn't work well for you. If it were me, I'd talk to my doctor about the possibility of either increasing the dosage or having some oral meds to take as needed for breakthrough pain.

As for the seizure medication, your doctor is probably talking about something like neurontin (gabapentin) or lyrica. Those are meds originally developed for treating epilepsy, but they are also used to treat nerve pain. Some people have really good luck with them, although they do tend to give you significant side effects when you first start them, so you have to start really slowly. I've never been on lyrica, but years ago I was maxed out on neurontin. Like everything else, it didn't do squat for me -- it just made me dizzy. But don't let that discourage you, a lot of people tolerate it really well & find that it really helps. You might think about giving it a try.

hugs,
Skeye

Post Edited (skeye) : 2/3/2010 10:36:16 PM (GMT-7)


skeye
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Date Joined Mar 2008
Total Posts : 2976
   Posted 2/3/2010 10:14 PM (GMT -7)   
Sal,

Welcome to HW!

Yes the duragesic patch is the same thing as the Fentanyl patch. Fentanyl is just the brand name; duragesic is the generic.

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/3/2010 10:29 PM (GMT -7)   
Golitho,
You've really been given a lot of great advice, IMHO. I've never used patches, but am on neurontin. Like Skeye said, your doc is probably talking about neurontin or lyrica, which really tend to be used more for nerve pain than epilepsy. I have a seizure disorder, and the neurontin is for my nerve pain, not the seizure disorder. These meds do take awhile to build up, and I would first find out how long it's going to be before you can get into a pain clinic. Maybe your PCP can give you another kind of med for BT pain like vicodin or percocet or even a muscle relaxer to take as needed. Again, I'm not a doc and am just sharing thoughts like Snowbunny and the others. For me, I had to start on a very low dose of neurontin and build up, and it does have some side effects. Your doctor is trying to help, but there's a reason we seek out PM specialists - because they know these kinds of meds the best.

Don't know if this helps any, but thought I'd toss it out.

Hugs,

PaLady

bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 2/4/2010 2:38 AM (GMT -7)   
I've been using Neurontin (gabapentin) for about a year now. Amazingly it helped with relieving the amount of muscle spasms in my neck almost immediately. It doesn't help with any of my other areas though but I'm happy with any little bit of relief. Definately start low and build up. I've tried a increased dose to see if it would help more but no difference was seen so more is not always better.

It does make your head a little weird. I have a hard time finding words, can't seem to get them out and sometimes loose my train of thought in the middle of a conversation. Lyrica gave me serious nightmares and the side effects were too much for me. We are all different though so this is something you'll have to discuss with your doctor.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13477
   Posted 2/4/2010 4:45 PM (GMT -7)   
Hi Golitho,
 
I am sorry to hear you are having some problems with what does sounds like BT pain. If I read your post correctly you are on a total of 37mcg of the Fentanyl.  If you feel this is controlling your pain up to a point, but once you increase activity the pain kicks in, then perhaps your dr will add a BT medication. Why not call and talk to his nurse about this and if they say an appt is required then I would schedule one to be seen. Don't try to ride this out to the next appt.
 
I was on the Fentanyl patches for several months and I did not do well with them at all. I stayed in constant withdrawal type symptoms or I was real loopy. It was during the summer when I was on them and it was pure hell. If I went outside I over heated which resulted in too much medication being released. I am notorious for running low grad efevers because of crohns and that played a role in there too. Then when that happened I got loopy and then came the withdrawal symptoms. They never last 72 hours either and it was just awful. They also gave me a bad attitude according to my daughter lol. That was probably the W/D crap causing that. When the dr bumped me up to 75mcg I was unable to urinate and  had to come off of them. Boy, was that ever a blessing disguise. 
 
You will have to decide how well it works to determine if perhaps you need to change to something else or just add something for BT pain. Let us know what happens, Hugs.,
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 2/4/2010 4:52 PM (GMT -7)   
Thank you everone for your advice,
 
Firstly Snowbunny I'm surprised that fentanyl is strong, I found the oxycontin/endone mix I was on post surgery much stronger than these patches. Like Skeye I am hardly aware I am taking them, but unlike Skeye I do notice the pain is numbed a bit. I have been on the maximum codeine/ tylenol mix for about a year and a half so I obviously do have a tolerance to opiates, my doctor felt I wouldn't feel 12mcg and she would have been right as I am 11days on the 25mcg patch, the 12 was only added last Monday, 5 days ago for me here in OZ. Thanks for the advice about where to put them, as I seem to be in a permanent hot flash from all this prednisone, sweating is a major problem for me. But no one said anything about clothes rubbing, my doctor suggested my back but I've been putting them on my rib cage. It is so humid in Sydney right now, I am dying with the humidity, heat and the side effects of prednisone plus the cortisone shots but haven't noticed any increase in pan relief.
 
PAlady and Jag, I think she mentioned neurontin, I see her again next week but I will tae on board the low dose element. I don't want to get a foggy head just as I return to lecturing, its stressful enough without losng my train of thought! Or my words.LOL. Not sure about the pain clinic, the paperwork is sent but I have no idea of their waiting lists etc.
 
Hi Sal, as Skeye has replied its the same thing just different names. The fentanyl is the active ingredient in Durogesic patches. Goodluck with your doctors appointment, I'm finding the bone gnawing ache is only being helped by the prednisone and that would be lethal for you! I don't know how good these patches would be but definately worth an ask.
 
Merry, I know I'm not going to get rid of this pain through pain killers, I just want to be able to work and earn some money to help pay for all this treatment. I'm extremily concerned about how bad I'm actually going to get before my rheumy finds something to stop this decline. I keep feeling like if I can just cope with this then I'll be ok but my fence posts keep moving all the time. Skeye, I'm still taking your advice about small steps of coping, not being overwhelmed by the big picture.
 
Thanks snow bunny, I don't take any offence, I am very open to all suggestions, no matter how new you are to these forums, anyone living with chronic pain has worth to me.
 
Struggling on, golitho

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13477
   Posted 2/4/2010 5:02 PM (GMT -7)   
Golitho you may want to go to Drugs.com and read up on these patches. You talk about the hot flashs and the prednisone, which I forgot about you being on the pred. Changes in body heat will have an effect on the patches. You may need to try something else for pain relief. Hugs,
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 2/4/2010 5:17 PM (GMT -7)   
OK Susie, I'll go and read up, steep learning curve time...goltiho
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