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Posted 1/16/2012 5:16 AM (GMT 0)
hey there.  hoping someone cam n offer some insigh- i have an appt with my pain doc on Tues and i have some thoughts but want to make sure it doesn't sound like i'm tryng to "steer" my treatment or am proposing something that is way off base.

Right now I'm on oxycodone 6x15 mg for the chronic pain from my crohn's disease.  the oxy's do not last anywhere near the 4-6 hours they are supposed to- closer to 3 hours...as a result i run out almost every month before my next appt.  My doc is awesome and listens, understands etc.  He is proposing to put me on the fentenyl patch with the oxys as breakthrough med.    we've talked about extended release oxycotin but with crohn'sy body does not absorb meds etc. normally so the pill would pass without all of the meds having been utilized by my body.  we both don't think that's the right way to go...

I did a bunch of research on fentenyl and frankly it scares the heck out of me.  it's rediculously strong and from what i read stopping it and getting off the patch is HORRIBLE.  So here's what I want to propose to my doc- I am going to ask him to bump my # of pills per month to 240 from the 195 currently prescribed (I get 6 a day plus 15 extra in case i need them which i always do).  that will be 8 a day or 1 every 3 hours.  the 15 mg is fine- there is still pain but its bearable.  i can go to work and get through the day.  it's just the fact tha it wears off so fast that is the problem.  If the 240 is too many pills i'm going to ask about 30 mg x 120 pills and i can break them all in half.

the doc has already said he will up # of pills if needed.  i just want to make sure what i am proposing sounds ok and not like i'm trying to just get more pills for fun.

any thoughts or suggestions?

 

Posted 1/16/2012 7:45 AM (GMT 0)
Hey Mgtman,

I've read some of your posts in the past... and I know you have absorption issues, etc.

Couple of thoughts...

First, I think what you are asking from your doc is completely reasonable. He seems to know your situation well... you seem to have good trust w/ him... So, I definitely think it makes sense.

The other thing, though, I wanted to mention is about the fentanyl. Just a couple of thoughts - not meant to steer you one way or the other - just to offer you "food for thought".

I've been on fentanyl MANY times... both in the patch form and the "lollipop". Having suffered w/ chronic pain for many years - there is nothing that helps my pain more than this. That being said, you are right - it can be a very hard medication to get off of. I had to get off of it when I couldn't wear the patch anymore (skin issues - couldn't keep it on, no matter what)... and when my insurance stopped covering the oral fentanyl. But, again, when it works - it's an excellent pain reliever.

So.... I think what you are proposing to your doctor is completely reasonable... I just didn't want you to be completely scared away by the fentanyl :) but I do understand what you are saying.

Good luck at your appointment on Tues - and let us know how it goes.

--Tina
Posted 1/16/2012 12:25 PM (GMT 0)
You can ask your doctor what are his thoughts on the following matter and then propose what you told us. Dont be scared of your doctor. Hopefully he will up your oxy.

I am on oxy 10 mg twice a day. My BT is vicadon 10-660.....My Pm doc doesnt want to increase my oxy so I place heat packs, cold packs, and my hot tub.

I think it is reasonable for you to ask your doctor.

Let us know what happens.

Soft Hugs
Betsey
Posted 1/16/2012 1:59 PM (GMT 0)
I have been using Fentanyl patches for 5 yrs and I would be MISERABLE without them! Pls do not be afraid of them! I have no side effects other than mild constipation as long as at right dose which your Dr can evaluate & decide! I do not feel drugged, tired, lethargic, any of the things I felt with oral dosage forms! (I have MCTD -like lupus)
Pls let me know how you do!
Posted 1/16/2012 2:16 PM (GMT 0)
I re-read your post @ concerns w getting off the medication & I feel that you should know.
1) I have been prescribed oxycodone at high doses & it was MUCH harder to DC (discontinue) than any other med I've had!
2) Fentanyl requires no FIRST-PASS METABOLISM in patch form therefore you DO NOT BUILD UP A TOLERANCE TO IT LIKE U DO W OXYCODONE!
3) IF U ARE USING THE PATCHES FOR LEGITIMATE PAIN (WHICH U OBVIOUSLY ARE!) THEN you will be shocked at how well this med works compared to ANY oral med-- -even controlled-release meds w ATC (around the clock) coverage!
4) if your Dr is suggesting it, there is a GOOD REASON! Your physician obviously trusts you.
Posted 1/16/2012 6:32 PM (GMT 0)
thanks all. eberything you said makes a lot of sense. i'm sure it would be worth trying i am so scared though. i already can tell that when the time comes to get off of the oxycodones i'm going to have issues...but like my wife says - we'll worry about that when the time comes- now we need to make sure the pain is under control. i'll definitely take everything you all said into consideration when i meet with my dc tomorrow...maybe it would be worth trying the patch to see...i guess better to try and make an informed decision than not try at all...have a great day!
Posted 1/16/2012 9:22 PM (GMT 0)
I wish u the best of luck for tomorrow & your wife is right! You cannot borrow worries in the future - you have to focus on the here & now.
The funny thing is ..having gone thru the whole gamut of meds for pain - I have far more fear of oxy than the patch. But I'm coming fro a totally different information set (I'm a Pharmacist but haven't been able to practice since I got hit hard w this auto-immune disease - & btw this is by no means professional advice - u should do what is determined to be best between your Dr & yourself).
sorry you have had this flare for 2yrs. Mine is just 1 flare after the next & bc I have a "mixed" connective tissue disease (combo of symptoms of lupus, RA, Fibro, RAYNAUDS) I am not eligible for the "big gun" meds. Although judging from others comments on horrible side effects, maybe that's a good thing. Why did u quit Remicade? I missed that.
Posted 1/16/2012 10:15 PM (GMT 0)
Hi,

I'd like to give a few comments on this too, since most people posting are finding great relief from the patch. For me (and I realize everyone is different), I found NO relief from the patch. I can honestly say I was happy and relieved when I was able to discontinue. I know this may not be what you want to hear, but oxy, soma, and ultracet all taken 4 x a day (along with controlled release xanax) have worked great for me. I really wish I could have one more oxy a day too, but I don't want to mess up a good thing. I used to use Dilaudid, but found that even upping the dose every few months had very little effect on my pain. It basically just "quit working". I've said that here before and was clobbered for saying it, but I speak only the truth. It just stopped giving me pain relief.

All my best!
Posted 1/16/2012 10:26 PM (GMT 0)
RM, Hey... good to see you :)

I've said it here before, too... I could take 100 dilaudid and it would do nothing for me. It used to work great. That's what happens w/ tolerance. I would debate this out w/ anyone - lol. I think those that don't believe that tolerance happens (even docs) have never had it happen.

Also, re: the patch - I can't remember. Didn't the fentanyl patch give you breathing problems and that's why you got off of it? Maybe I'm mixing you up w/ someone else....

All that said, Mtgman, I remembered that you live in Arizona... I don't know how that would mix w/ the heat, either.

Good luck on your appointment tomorrow! --Tina
Posted 1/17/2012 12:17 AM (GMT 0)
Hey Tina!!! Good to see you too!!!

It wasn't me with the breathing problems from the patch. I only had it for a short period of time immediately after my fusion (a few years ago now). It didn't do anything at all for me except make my skin break out where the adhesive was. I'm allergic to latex and many adhesives so perhaps that is what you were thinking of. I also have the crazies when I get things that affect the serotonin and have had to go by EMS for serotonin syndrome a time or two. Strangely, I don't have a problem with Tramadol, despite the serotonin affect.

Like you have mentioned before, we all have different reactions to meds and despite those who don't believe....tolerance is a very real thing and can happen without regard to what they believe. I KNOW it happened with me.

I've missed you Tina. I don't want to Hyjack a thread so I won't linger on the subject, but I did want to get my two cents in to the patch and how it works.

:}
Posted 1/17/2012 12:21 AM (GMT 0)
Hi Mtgman
Gonna throw my 2 cents in for what it's worth. I was on the patch prior to my back surgery and it worked okay except that it only really lasted 2 days rather than the 3 it says it does. I think most doctors have come to that conclusion too. I had no problem getting off it after my back surgery. I did however have quite a time with the oxycodone but it didn't help that my doctor took my off it cold turkey after taking it for a couple of years. That was the end of our relationship. That's other story. Anyway to get back to you asking if what you propose is reasonable. I think you should be able to talk to your doctor about different opinions without fear. It sounds as though you have a good doctor , so that shouldn't be a problem. After all why shouldn't you have some input about your care. I just wish every pain doctor was willing to listen to their patients and work together. I have unfortunately had bad experiences with pain doctors who are my way or the highway attitudes. Good luck and let us know how it goes.
Stingray
Posted 1/17/2012 3:16 AM (GMT 0)
thanks everyone i really appreciate the insight! i am in AZ...the doc wanted to try the patch a few months ago but told me to wait til after the hottest part of the year...so that is def. a concern. i had to stop remicase bc i started producing antibodies very quickly after i started the remicade...and at $17,000 a dose they don't mess around too long! haha. I've been on the humira for a while now- once a week...sometimes i think it works and sometimes not...i feel like really all we're doing is trying to treat symptoms not fight the illness...oh well...
Posted 1/17/2012 4:21 PM (GMT 0)
Hi Mgmt,

For what it's worth, I found the Fentanyl patches to be extremely effective, especially when taken with another opiod for breakthrough pain. The only drawback I experienced, living in Florida with the heat and humidity, is the patches did not adhere well.

They did take me a few days to adjust to, as initially I felt very groggy, but I was then able to function well enough to maintain a 4.0 GPA while attending college once I got used to the medication.
Posted 1/17/2012 7:33 PM (GMT 0)
Hi Pharm Girl and welcome to HW. I too completed my Masters with a 4.0, while using the meds I was prescribed. I explained to my PCP recently that meds taken to relieve true pain do not normally result in the same experience as those taking them incorrectly. It took her a minute to understand, but her medical training came back to her and she understood fully. It was strange that even she had forgotten that those needing meds for honest medical purposes have much different physical reactions than those taking too higt of a dose or a med they should not be on.

Of course you are very right in saying that grogginess and other side effects are normal (even for us), but they tend to subside very quickly if the med is what our body needs. Horrific pain is not normal (as I'm sure you fully understand) and it is wonderful when a DR "gets" it. She was astounded that I had taken my normal meds and seemed to show no signs of having taken them. I even had a list on my phone app that I read to her with exact times and doses....which also freaked her out.

It's nice to see another CP patient has completed graduate school with very high scores. Of course, I haven't used my degree even one day since I obtained it, but I was able to show my daughter that even CP can't be used as an excuse not to study and do well in school.

It was $20,000.00 that went down the drain and ended up making it very much more difficult to get my SSD, but I did get that too.

Thanks for bringing up the point.
Posted 1/18/2012 3:42 AM (GMT 0)
doc was cool. bumped me up to 210 pills (7 a day) and said whenever i'm ready to try the patch it's ok with him. i told him i'll read up some more- target was out of the usual manufacturer so the pills i got have 187 marked on them...never had these before. i hope they are as effective.
Posted 1/18/2012 4:44 PM (GMT 0)
I tried fentanyl and butrans patches for joint/nerve pain caused by side effects from Humira I took for a bad Crohn's flare and whilst they worked well with the pain they didn't combine well with codeine. I need to take some form of codeine as have an ileo and have had all colon and most of small bowel removed over numerous surgeries for the crohn's. So would have loved to stay on either of the patches but unfortunatley it wasn't to be so am now on oxycodone 10-15mg 4 times a day and 300mg gabapentin 3 times a day and amitriptyline at night and it doesn't make it pain free but takes the edge off it. I had to stop both patches suddenly after 6 weeks on eacch gradually increasing up the doseage and didn't have any side effects whilst on them or withdrawal symptoms when I came off but then don't seem to get withdrawal problems with any pain killers I have been on and always just stopped them at will when pain has got better.

Glad you got something sorted.
Posted 1/18/2012 10:37 PM (GMT 0)
mtgman, just wondering, would seeing the patches in person help with some decision making?(as they've changed a lot in the last couple of years, they are now more like a bandaid and have lost the "reserviour" of gel)...so if you'd like, you can email me, and I can show you both what it looks like attache (I have them on my shoulder) and I can bring one too...

Oh, and I haven't gone up in dosage since I've been on them...heck I think I was on them when we had sushi that one time (but they were the gel kind then). I'm glad your doc is working with you.
Posted 1/18/2012 11:16 PM (GMT 0)
I feel sorry for you if you have to take so much because of absorption issues. I use as break through along with oxycontin 9 -10 hr release. Opioids are effective for back pain but do little for neck shoulder pain associated with very frequent migraines. Zomig is remarkable to alleviate just the neck pain but is prone to give med induced migraines if overused. Neck pain is in another class of pain and maintaining a GPA of 4 when I can't think would be something. I only manage pain but try not to take away all of it for fear of increasing dosage and possible eventual addiction. My aim is to get pain free. Neuroepileptics don't do much for me. Lyrica made my migraines worst and added weight. Taking away pain too late at night is a problem with oxycodone as it energizes me and I end up cleaning. Best to have alittle discomfort with your sleeping meds.
Posted 1/19/2012 2:13 AM (GMT 0)
I've had some interesting results with oxcycodone and fentanyl patches
For those of you who say you didn't see great pain relief with either of these drugs, I've discovered that it's ALL IN THE MANUFACTURER!
My dr rx'd many different strengths of each. When the 5/325 oxcy by Malenkroft (sp?) gave me no relief, he would write a new rx for 10/650. When it was filled, Watson was the manufacturer. It was WAY too strong! We decided to cut it in half. Still had nausea from them.
Short story: I can't handle the side affects of duragesic (fentanyl) patches from anyone except Mylan and Sandoz. The others make me very sleepy while not giving me any pain relief.
For oxcycodone - only Qualitest brand works for me.
I can't count the number of full boxes/bottles of drugs I've had to take to my pain doctor's office to be destroyed. Last week it was 3 full boxes of fentanyl patches.
So, it might not be the drug. Instead it might be the manufacturers at fault as to why you are not getting good pain control. All manufacturers use their own "cocktail" of inert ingredients. Try getting the name of the manufacture for those drugs that seem to work best from these posts. I was amazed at the difference between them, even tho the pharmacists and doctors swear they are all the same drug. Hope this helps somebody out there. It took me a year+ to finally figure this out eyes
Posted 1/19/2012 11:28 PM (GMT 0)

stripey said...
I tried fentanyl and butrans patches for joint/nerve pain caused by side effects from Humira I took for a bad Crohn's flare and whilst they worked well with the pain they didn't combine well with codeine. I need to take some form of codeine as have an ileo and have had all colon and most of small bowel removed over numerous surgeries for the crohn's. So would have loved to stay on either of the patches but unfortunatley it wasn't to be so am now on oxycodone 10-15mg 4 times a day and 300mg gabapentin 3 times a day and amitriptyline at night and it doesn't make it pain free but takes the edge off it. I had to stop both patches suddenly after 6 weeks on eacch gradually increasing up the doseage and didn't have any side effects whilst on them or withdrawal symptoms when I came off but then don't seem to get withdrawal problems with any pain killers I have been on and always just stopped them at will when pain has got better.

Glad you got something sorted.

 

You are surely blessed to be one of those rare people who for genetic or whatever reasons are able to come off narcotic pain killers without any difficulty.  What was the longest period of time you were on a daily pain med, and then had to come off of it?

 

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