|
HI All! Update...
I haven't been here for a while but have been busy with PN stuff.
I hope everyone is having more good days than bad. I finally had to give up working all together. The PN pain in my legs has gotten continually worse to the point where I just couldn't drive and work all day. I hated giving up my job because I really enjoyed it but knew the dr. was right when he said it was time to quit trying to work and get better at the same time. I've also been diagnosised with Spinal Arthritis since my last post here. So, I applied for Teacher Retirement Disability and was accepted in 2 1/2 weeks! I was VERY lucky! I was able to continue with my insurance and didn't have to pay those outragous Cobra payments! :confused: I have a question for those of you using Fentanyl patches...I'm using 50mg now and still having a lot of break through pain. What dose are y'all using? I'm taking Hydrocodone for the break through pain, daily. I'm thinking of asking my Pain dr. about an increase in patches....any suggestions?? I have the upper and lower Spinal Cord Stimulators, that I use daily and still receive IVIG weekly. UGH!!!!!!! All these meds can drive ya nuts!! Take care everyone.....love to hear from ya! Roxie :hug: |
You know you are always in my thoughts and I was happy to see your post. Sorry of course about your pain. Sending warm and happy/pain free wishes
|
For Roxie - I've had painful sensory PN for 21 years have been using the Fentanyl patches since 1-9-02. All the meds the Neuros and Pain Specialists tried just didn't work and I have used everything from Neurontin to Lyrica. I finally asked my primary care physician on what to do and he asked if anyone had ever prescribed the Duragesic Patch and when I said no he started me on the 50mcg patch. On 4-10-02 we went to the 75mcg patch and on 11-18-02 we started on the 100mcg strength patch and BINGO - my 7 to 9+ pain dropped down to a 2 to 4 which I tolerate very well. On 3-19-07 we raised it to 2 patches: 1 100 strength patch and 1 25 strength patch and this is where I am today and the pain is still maintained at the 2-4 level. I function just fine at this level...my eyes are clear, hands are steady, and I have full control of all my faculties. I drive my car without any problem and I'm walking a mile plus every day using only my cane.
I am dependent on my patches but not addicted and there is a huge difference in dependency and addiction. And, I have never once felt "high" or "zonked out" using these patches. I will be 78 years old on the 28th of this month and we plan to continue using this medication for my moderate to severe pain until I die or a cure for PN is found. Because of cost we are using a generic form of the Duragesic Patch which is called the 'Fentanyl Transdermal System'. The cost for the generic is still outrageous but much cheaper than the Duragesic Patch brand. In either case a very good insurance plan is desirable - or else being super rich. Unfortunately these patches don't always work for everyone who has PN pain -I don't know why - they just don't. I suspect there are lots of medications that work for some and not others so it must be the nature of the beast. I do suspect that in some cases the patient does not give a medication a sufficient period of time to work. In other cases I suspect it's a matter of titration...the doctor or patient will not increase the dosage so the med being tried was never given a fair chance to work. After 21 plus years of living with moderate to severe levels of pain I'm convinced that to achieve pain control the medication must be used in sufficient strength (properly titrated) and it must remain in the blood stream 24/7/365. Good luck Roxie - I hope you find pain control ASAP. P.S. These patches are the ONLY thing I'm using for pain. My PCP gave me hydrocordone in case of breakthrough pain but that happens so seldom I rarely ever use it. |
HI Dan!
Thanks for the info! I've been on the 50mg (generic)patch for 3 months and it just doesn't cut the pain. I'm going to see my pain dr. soon and will talk to him about raising the dose. I'm so tired of dealing with this pain day in and day out...and it's worse when it's raining and/or cold out. I can hardly wait for summer!! Thanks again! Roxie |
Roxie? Dan is a good source about the pain?
He can be a good source to guide you thru the medical up's down's and biases some docs mite have about prescribing it...Worth a trial, no?
It's also great to hear that you got cleared on the disability so easily! Knew you were smart enuf to get all YOUR ducks in line...then shoot down the bad ones! :D And you've been thru and now going thru so much more! Life isn't RIGHT to good people at times! May we all be able to greet spring with a smile and some silly things to laugh at! At times, just a giggle at something can heal the soul and the heart to give the mind the strength to go on and BEAT IT! Whatever it is... Hugs, good things and heaps of hugs! :hug::hug::hug::hug::hug::hug::hug: - got that? - j |
In my above reply to Roxie about the Duragesic Patch I mentioned "dependency and addiction". This site will explain it more thoroughly:
http://www.letstalkpain.org/real_story/addictions.html |
Fentanyl patch and medicare
Quote:
Does Medicare cover the cost of fentanyl patches? Augie |
Quote:
My dr. said he won't go higher than the 50mcg because after a while your body continues to need more and more as your body adjusts because your pain continues to get worse and worse. My pain is always at 8-9 level, horrible, and I can't find any meds to cover the pain. I'm using the patch, and 100/650 Darvocet and Balocet.......nothing works. Thanks again for your post and I'm printing off so I can show my dr. I hope I can talk him in to at least trying a higher dose, I've tried everything else! |
Hi Roxie,
You might inquire about using Methadone it worked great for me, but after a couple of years it affected my prostate (you won't have this problem:wink:) Good Luck Lanny |
For Augie: I have Medicare and a supplemental insurance plan and it's the supplemental that pays for the Duragesic Patches. If Medicare pays anything on it I'm not aware of it. Anyway, it takes 2 RXes - one for the 100 strength and one for the 25 strength so I pay a total of only $6 monthly. Since it's a narcotic I can only get a months supply at a time.
For Roxie: I totally disagree with your doc regarding his policy of limiting the strength of a narcotic. I suspect he fears the DEA more than he cares for his patient(s). Most docs won't even accept chronic pain patients in their practice and it's because a few docs have been busted by the DEA. Yet they all go by the rule of "First, do no harm". What, pray tell, is more harmful than sending a patient home to suffer in pure agony because of a horrendous level of pain? My feeling is (and more and more doctors are agreeing) that chronic moderate to severe pain is a legitimate medical condition that deserve the best the medical profession has to offer. Also, I think that most, if not all, of the doctors the DEA has busted - needed to be busted! I think your doc needs to upgrade his thinking about treating pain, but hey, that might take a little reading and that could cut into the number of patients he can book in a week. If I were you, and he wouldn't increase (titrate) my pain reliever, I would fire him and find a doctor who truly cares for his patients. Just my humble opinion. |
[QUOTE=DanP;660334][COLOR="Blue"]
For Roxie: I suspect he fears the DEA more than he cares for his patient(s). *** Amen, brother! That has been my experience (although I have my doubts that the morphine cs I take (60 mg. daily) has any effect)... once I am through this week (not quite as bad as last week) I will start the process of finding a new primary care physician (she only last month referred me to the pain management program). |
Hi Roxie.....I feel for you as I too have that pain at the 10 level everyday & nothing seems to work for relief. I have had my PN for .....it will be 9 yrs. this coming Aug.. It has progressed so badly in the last 24 months that I am in bed pretty much full time now. We have tried every med under the sun plus epidurals & nothing has worked.
Today I'm back to the Neurologists, been seeing him a yr. & we just keep trying different meds. Meanwhile I have suffered like hell with this pain just getting worse & worse. Today I am going to get a spinal tap & another nerve conduction study. I'm going to ask him about the patches & see if I can try those. |
Good luck Muffy. I hope you will soon find a really good doctor who will truly work with you with a genuine interest in gaining control over your pain. I urge you to be absolutely honest with the doc and never exaggerate the level of your pain. Your doc must be able to believe in you and this works both ways resulting in mutual trust. Once this trust is established I believe there is not much the two of you can't accomplish.
Your doc has an arsenal of pain relievers and it's mostly a question of finding what will work for you. Patience by you and the physician plays a big role as does titrating the meds for maximum results plus giving the meds the time to work and your body the time to adjust - all of which can take several days to two weeks or more. Many meds may have to be tried so hang in there, think positive, and believe a solution will be found and never ever give up. I've now had this PN crud for 22 years and since trying the Duragesic Patch on 9 Jan 02 my life changed. My constant chronic 7 to 9+ pain levels from my knees down have been reduced to a modest 2 to 4 which I have come to virtually ignore. I am now 78 years old and enjoying life very much. Once a pain med is found for you then the same results can be yours. Again, hang in there - 'cause there are better days ahead. |
Thank You Dan. I fear we are really going to find a pain med. I been on approx. 50 different meds & nothing has worked. I worked with a pain management clinic prior to this neurologist. This is neurologist #2.
He did not do the spinal yesterday but he did a nerve conduction study that sent me spinning. Its been a year since the last one & man this one hurt like hell. I still can't stand up on my feet. Really riled things up in there. My cpap machine was acting up & I was not using it so I got in trouble for that. He said the gov. is coming down on all these cpaps that medicare is paying for & people are not using so he will not go forward in treating me with pain meds until I start using my machine again. So we have another sleep study set up for the end of this month & then we'll try the patch. I sure look forward to that working. It would be great if it does. |
| All times are GMT -5. The time now is 08:30 AM. |
Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.
vBulletin Optimisation provided by
vB Optimise (Lite) -
vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.