Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
I have been struggling for a while with pain. I have been telling my neph for the past few weeks that I am tired of always chasing pain and that I wanted to try an around the clock pain med along with a breakthrough med. He finally gave me Fentanyl with Hydrocodone for break-through.
It's been a year since I have felt this good. 95+% of the pain is gone leaving sometimes mild discomfort. It is absolutely amazing. I don't feel as strung out as I do with Hydrocodone alone. Occasional sedation. I carpool with my wife, so she is driving until I am more comfortable.
Anyway, I don't hear that drug brought up much and just wanted to share my experience with it.
Larry
It's been a year since I have felt this good. 95+% of the pain is gone leaving sometimes mild discomfort. It is absolutely amazing. I don't feel as strung out as I do with Hydrocodone alone. Occasional sedation. I carpool with my wife, so she is driving until I am more comfortable.
Anyway, I don't hear that drug brought up much and just wanted to share my experience with it.
Larry
Lisa H
Aside from the usual constipation, my only side effect I am having a little problem with is sedation.
Most of the time I feel very little or no sedation, but this week, there have been 3 times at work where I had to go lay down and take a nap. My employer is so awesome about it. Unfortunately I hurt after sleeping on the couch at work. LOL
After while I might see if half dose is sufficient.
This medicine has really been a game changer for me.
Yes, it is a pretty serious drug. I am so glad to not be chasing pain all the time now.
Thanks (I think)! :)
Larry,
My doctors and I discussed the Fentanyl patch but dismissed them as an option for me due to my utter lack of response to IV Fentanyl. I get no pain relief and no sedation from the IV version, even in such ludicrously high doses that would knock out a water buffalo (the anesthiologist got tired of using cows as examples, so he started using water buffalo, especially with me and my body's resistance to some medications). As such, it stood to reason that the patch would be equally ineffective, at least for me.
Otherwise it's a very good, very strong medication for those for whom it has a therapeutic benefit. What's better is that it bypasses the GI tract, so most Fentanyl patients experience less constipation than those using many of the oral sustained release medications.
Just please read the cautions about heat; it can dramatically increase the rate at which the medication is released and cause a potentially fatal reaction.
You mentioned after a while you might see if half a dose is sufficient. You know you cannot cut the patches in half, right? The patches must stay intact or they will alter the way the dose is released. If the itegrity of the patch is compromised in any way, the entire dose can be released at once, causing a fatal overdose (which was also a reason I wasn't keen on the patch; even if it did work I didn't want to worry about hot showers or a warm blanket or the patch integrity or the many recalls that were occuring at the time (problems that seem to have been resolved). So if you want to try a lower dose, you must do so with a new prescription for a lower dose patch. But it sounds like this is the right dose based on your pain relief. This is new medication (when did you start?). You need to give your body some time to get used to it; it truly does take time to become accustome to a new dose of medication (or in this case, a new medication overall). Some of us adapt faster than others (and some of us have no response at all, but still wouldn't dream of driving anyhow!).
I hope this continues to work for you. Just stay away from the heat and be careful with the patches (they must be flushed down the toilet, not thown out in the trash where someone will go rooting through your trash to try to find a used patch and get some leftover medication from it). Water helps to inactivate the active ingredient and keeps it out of the hands of the trash pickets). It probably seriously sedates the fishies too!
Best wishes,
Ruth
My nurse gave me her e-mail address and we have been e-mailing back and forth. I am taking the 25 mcg/hr 72 hr patch. She mentioned that they also make the patch in half that strength if I wanted to try it later.
I always read the information that comes with the medicine and that one was easily the scariest one I have read.
I just wanted to throw this out there, because I am sure there are tons of people in the same progression of the disease as me.
I finally in the past year have worked up the nerve (many thanks to this forum) to finally tell the doctor things like I need pain medicine and Tylenol isn't cutting it anymore. This time it was - I am tired of always chasing pain and I want something in my system around the clock.
I am much more active in my own care now. And so far, it has been for the better. :)