Calling all fentanyl patch users/experts!

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SherylN
Regular Member


Date Joined Jun 2005
Total Posts : 28
   Posted 11/18/2009 3:06 PM (GMT -6)   
I've been on the 50mg 72-hour duragesic fentanyl patch for about 2 months now for bulging discs and severe chronic low back pain.  When combined with prednisone (I have Crohn's disease as well), the patches kept me completely, 100% pain free.  I was put on the prednisone at the same time because my Crohn's was flaring badly - it was kind of a coincidence.  I really thought it was all "the patch" providing the pain relief, but as soon as I tapered off the prednisone, the pain returned.  It was not as severe as it was before the patch, but still, a very considerable amount of pain.  So I asked my gastro to put me on another short course of prednisone and sure enough, that's it - the pred and the patch seem to be the magic combination.  However, it's not good at all to stay on the prednisone for any great length of time.  He is calling in enough today to last two more weeks.  He (gastro) gave me the first script for the patches, then referred me to my internal doc to continue writing them for me, which he kindly agreed to do.
 
I have an appointment with my internal doc next week.  I guess my question, concern, what have you is -- what the *&^% do I do when the prednisone is gone?  I tried feeling out the nurse at the internal doc's office over the phone and she said, oh, it's much too soon to consider increasing you to a 75mg patch.
 
Why???? Is there some predetermined time limit or something?
 
I feel like I've found a solution to 2 years of horrible pain, so bad I wanted to die, and now they're saying no more prednisone and no higher on the patch??
 
Thanks, and I'm sure after reading this you're thinking, wow, this woman is a nutbag.
 
Sheryl

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1102
   Posted 11/18/2009 3:20 PM (GMT -6)   
Sheryl,
As someone who is currently suffering from the effects of too much prednisone over a period of time- I would advise you to stay away from the prednisone if at all possible. The possible outcome of staying on or using it too frequently is avascular necrosis- bone death. There are several other negative outcomes of using prednisone/cortisone type meds that I am sure that you are familiar with. But having to have wrist replacements or fusions or having hip replacements is a big price to pay for using them too often/too much.
That being said, if the fentanyl helps some, then it may need to be titrated up. Once you are on opiate medications, there is no upper limit. I was on 300 mcgs /an hour at one point, so I know of what I speak. You may need to see a pain management doctor instead of an internest to manage the pain medications, but continuing to add prednisone to your medication regimine when it is not needed is dangerous and can do permanent damage that you can only imagine.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
[url=http://dragcave.net/view/xdyP][img]http://dragcave.net/image/xdyP.gif[/img][/url]


Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 11/18/2009 3:49 PM (GMT -6)   
Talk to your doctor and explain to him what you have just told us. My non medical guess is that the predisone is providing some anti-inflamatory effects for you which is helping with your pain. There are a lot of anti-inflamatory drugs on the market which your doctor can try you on which would be somewhat safer to be on for a long time than predisone.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.


merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 11/18/2009 4:17 PM (GMT -6)   
I use the 50 mcg patches. I am also rxd oxycodone 15 mg 3x a day for the break thru pain. and a muscle relaxer.

I bet you need a breakthru med like oxycodone. Ask your doc about it. also I would see a pain specialist if you can to manage your pain.

good luck.

also i change my patches every 2 days instead of every 3 . works better for me.

melissa
Chronic Lyme Disease
Fibromyalgia
Chronic fatigue syndrome
Polycystic Ovarian Syndrome
Sleep Apnea
Hypothyroidism
Adrenal Fatigue
 


privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 11/18/2009 4:34 PM (GMT -6)   
I haven't been on steriods for pain but have been on them for other things and the one thing to remember is you need to wein off of the med you aren't supposed to just stop taking it because it is hard on your body. So when you go off you may want to mention that to whoever is discontinuing the medication. It is a wonderful med but the side effects are kind of scarey.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11067
   Posted 11/18/2009 6:22 PM (GMT -6)   
Hi, I am sorry you are so miserable. But, as Sandi said steroids long term are out. For one thing this is a drug that you can only have so much of over a period of time. I have been on the patches before too and will tell you my PM dr did not increase them very often either. You best bet is to get a script for something for BT pain, yes even with the patches you can have BT meds.

As a result of long term steroid use I have osteoporosis and have lost 2 inches in height. If I had know they could caused so many problems you can bet I would not have taken them.

Take care.
Straydog/Susie
Moderator Chronic Pain
 
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 & decreased circulation in both legs. 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 16 different daily medications. Intrathecal pain pump implanted June 05.


SherylN
Regular Member


Date Joined Jun 2005
Total Posts : 28
   Posted 11/19/2009 9:33 AM (GMT -6)   
Thank you all for your responses.  I have been on and off Prednisone for many years, having Crohn's disease so I do know the dangers.  I've been lucky - had a bone scan done a few years back and everything looked good.
 
I have an appointment with the internal doc next Wednesday.  We'll discuss how the steriod/patch combo can't be a long-term option.  I really don't think he will offer up narcotics for breath-through pain.  I also kind of doubt he'll up the patch.
 
I may have to bite the bullet and go to a PM doc.
 
Thanks again everyone.
 
SherylN

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11067
   Posted 11/19/2009 9:46 AM (GMT -6)   
SheryIn that would be your best bet is to get into pain mgt dr. They know the combo's of meds much better. The kind of pain you describe you would probably get much more benefit seeing a PM dr. Be sure you get into one that will give meds, some only what to do procedures, such as injections and will not write a script.
Straydog/Susie
Moderator Chronic Pain
 
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 & decreased circulation in both legs. 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 16 different daily medications. Intrathecal pain pump implanted June 05.


BionicWoman
Regular Member


Date Joined Jul 2008
Total Posts : 243
   Posted 11/20/2009 8:23 AM (GMT -6)   
If the pred is knocking down the pain, then it sounds to me like inflammation is causing a significant part of your pain. Have you tried any of the non-steroidal anti-inflammatories? And if not, is that an option for you, with your other conditions?

I look at pain control just like I look at any other pest control. I can kill ants by spraying them with hairspray if I use half the bottle on them, but a can of Raid ant killer does a much better job. Pain is the same way - enough Fentanyl will cover just about anything, but that doesn't necessarily mean it's the best, most efficient medication for every type of pain. A lot of the time, it's takes a combination of medications that each target different types of pain. I use fentanyl patches, but also take an NSAID, a muscle relaxer, and have an SCS implant. None of those things manage my pain by themselves, but the combination keeps me nearly pain free, most days :-)
The difference between perseverance and obstinacy is that one comes from a strong will, and the other from a strong won't. ~Henry Ward Beecher

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