fentanyl question

[dkdreamer1]

I haven't posted for a while although i try and check site a couple times a week. I like some of the others feel guilty about not being too supportive. I don't really think that i have much to offer. I think that the thread Lisa started pertains to me. i have been stuck in a dark place for the last couple of months. I can't seem to grasp all that is wrong and goes on in my body from day to day. I feel like giving up and checking into a loney bin where i can just sit around in fuzzy slippers with a blanket around me and go to crafts and make potholders. That sounds very inviting. i am stuck in bed alot because of my csf leak so boredom is my best friend right now. any way to why i posted.

I started on fentanyl patches a month ago. was on kadian but the constipation was too extreme. the kadian relief from pain i noticed within a week or so. it helped with my back, head and leg pain pretty well. The patch i notice some difference but by the time to change i almost always have a migraine and am needing BT meds for pain. I was wondering if a bigger dose is normal or changing the patch sooner? i see my pm on friday i think and want to talk about making a change in my current dose. It would be great to know what others on here use concerning this med.

Thanks for your advice.
DK

[cindybear]

DK, If the Kadian was working, Did you try every thing for constipation..?? I was on Kadian and it is a very good drug..And I used Prescription Miralax..EVERYDAY with my coffee, never had a problem with constipation..Now I'm on methadone and reg. morphine and still on miralax and I find it is just a great drug for narcotic use related constipation...When you first try it , you have to give it a good 5 days to get in your system,,Then do not miss a dose,,unless things get to loose..Which they may..And then you might have to skip a dose every once in a while...The reason I changed morphines, cause stupid me ,When I got medicare, I dumped my hubbies drug coverage and took part D's...WRONG thing to do !!!!I learn with experience...Unfortunately...HUgs, Cindy

[Kira]

With regards to the fentanyl patches wearing off before it is time to change them... On this board, I've heard of people fixing the problem with either of the things you suggested.

Some people on this board change their patches more often than every 72hrs because of this.

But, sometimes a dose increase can also solve this problem. A while ago, my patches seemed to be wearing off before it was time for a new patch, but they also just weren't providing adequate pain relief in general. So, at my next pain clinic appointment, my PM doc decided to try a dose increase before switching to more frequent patch changes... and the dose increase (which we were going to do anyway) did seem to take care of the problem.

So, I guess all I've got for you is the standard cop-out answer... ask your doc and see what they want to do about it.

Regardless of what you decide to do, I hope you get some better coverage and good pain relief soon.

[dkdreamer1]

Cindy and kira,

Thanks for your reply. i was on the kadian in 05 and part of 06. In the spring of 06 my intestines shut down completely. I was in hospital for 10 days on many meds. I weened off of it as they felt that it and steroids were possibly the cause. i later found out that i have nerve problems affecting both my bowels and bladder. I went back on it this fall-jan. I again was having more problems then usual with my bowels so the Dr became concerned. Cindy, i too use the mirilax and other things. I do regret not being able to be on it as my quality of life was much better. I kinda wish i hadn't tried it again as it was a great med for steady pain control. I guess i will rely on what the pm thinks is best. Do the patches only come in 25mg?

Thanks again,
DK

[Kira]

The patches come in 12.5 mcg/hr, 25 mcg/hr, 50 mcg/hr, 75 mcg/hr, and 100 mcg/hr. I don't think there are any higher patch strengths, but I could be wrong.

You can also use combinations of different patch strengths to reach the dose your doctor wants. For instance, my current dosage is 62.5 mcg/hr... so I wear a 50 mcg/hr patch and a 12.5 mcg/hr patch.

I really think you should talk to your doctor if you're not getting adequate relief... sometimes they need to play around a bit with the doses before they find what's right for your body.

[Nana4&cntn]

DK,

I wore the fentanyl patches for approx. 1 year. The constipation was incredible!! My PM decided to use methadone and I take fentanyl tablets as backup meds. I did try several types of patches and miralax, but, my body just couldn't deal with them.
I know this isn't any help, but, I wanted to let you know there are other combinations if you cannot deal with the patches.
I hope you get your pain under control soon.

Take care,
Kathy

[dkdreamer1]

thanks everyone,

My pm or rather the pa in his office changed me to 50mg patch. She also wants me to start cymbalta, i told her that it causes me to sweat profusely and she said that if i take it in the morning that shouldn't happen. she also wants me back on lyrica. i didn't want to do that either as i gained alot of weight and had nuerological synptoms when i slept simular to seizures (per my hisband). I wasn't aware of it. Anyway she gave me scripts and samples but i am going to wait and see if the higher dose of pain meds helps before adding yet another drug. I also got the results from my emg. i have definant nerve problems in my left leg and nerve roots in my lower spine. She really wasn't much help in explaining things. They are scheduling me for an epidural.

Also they are doing yet another blood patch for my csf leak. this will be number 7. i am going to try and convince them to do a patch in both the lumbar and cervical at the same time.

I made an appointment with the actual dr. next month as i am not sure i understand exactly what is going on in my back. I have lots of numbness in both legs and back and would like to know what to do to help.

Thanks again for your help,
DK

[Mark N]

DK, you all ready have some very good advice about the patches. I just want to let you know that feeling like you could slip into a full care center and be taken care of isn't unusual for those of us that have limited lives. Add depression to that and it is very easy to throw your hands and say no more. Even though I have been able to avoid the depression and haven't given in yet, I do know the feeling of unending pain and how to face day after day of limited mobility due to the pain. I wish I could give you the words that would make your life easier, I only know that I have approached my new life one day at a time. I know I can deal with the pain for today. If I let the days gone past and the days yet to come enter into my mind then it gets to overwhelming. None of us planned on a life like this so we can't easily deal with the consequences of CP.

I hope you have help dealing with the dark hole that CP can cause. it isn't something to deal with on you own once it pushes you down the hole. Please don't stay away but come here and tell us what is going on with you. I know I count on the people here to help me get through some tough times recently and I appreciate the kindness and support that I find.

I hope you get the blood patches you want and they work.

[dkdreamer1]

Thanks Mark and all,

they called yesterday and scheduled my patch for 4/2 and the epidural for the 14th. My daughter and son-in-law were here most of last week and i found out that i am going to be a grandma! I am beyond excited. They go today to find out how far along they are. I really think that i can't stay bummed with a baby on the way!

i do have a question about the fentanyl patch. I went from 25 to 50 and i didn't have the bad headache when it was time to change. I do however seem to be nauseated late at night and sometimes in the morning. Have any of you guys on it experienced this? I wonder if i should go up slower. I don't know, but i do know that feeling sick stinks! Maybe it is sympathy morning sickness.
take care all and thanks again,
DK

[RustyD]

You sound like I did when I first went on Fentanyl many years ago.

My doc then had me change the patch every 48 hours and that did the trick for me.

Are you changing every 72? If so talk to your doc about going to every 48 hours..

[norcalmom]

I also had problems with fentanyl patches lasting 72 hours and my doctors swtiched me to every 48 hours and it has made a big difference. I have been on this for about one year and I also take break trough meds on top seems like everyday because I was told the 100 mcg was the strongest they had. I rather only be on the patch it works for me so I dont have to stop and remember to take my pain meds so the pain doesnt get me later. I have had to switch doctors several times and each time the doctors told me they never heard about one patch every 48 hours and after being persistant and having the doctors get educated through the pharmacist that not everyone can last 72 hours they didnt have a problem with changing the script. At first every doctor questioned it but after talking to the pharmacist they didnt have a problem with it. I have a question for anyone who has every been on the patch for about a year and also have had been on oxycontin. Can anyone tell me the difference in the two medication. It seems as if Im at the max of 100mcg of the fentanyl patch and now having to take other pain meds which the whole reason for going on the patch was to get off taking pain pills. I am very leary about going to oxycontin from what I hear about them, but it has been brought up before to change meds to see if they work better for me. I have been diagnosed with double crush syndrome ? in my neck and my elbow. I had the ulnar release surgery over one year ago and the surgery seemed to make things worse for me so my hand surgeon would like to do it again differently cutting the muscle and doesnt want to touch the nerve problem in my neck. The doc told me my pain will still be about a 6 after surgery so not sure what they will do for me for the pain if theres not hope for it to get any better than a 6. Sounds like I will be on medications forever unless things take a total turn around with this surgery.

[Mark N]

norcal, it isn't much fun realizing we have to take pain meds for the rest of our lives especially when it only controls our pain not eliminate it. Sorry to hear you are needing to supplement the patch with another pain med.

[Kira]

norcal,

If your doctor wants to increase your patch dose beyond 100 mcg/hr, one option would be to wear two patches so that you have the total dose your doctor wants.

For instance, right now I am on 62.5 mcg/hr -- a 50 mcg/hr patch and a 12.5 mcg/hr patch. I ended up on that dose because my doc likes to do very gradual increases if possible. We were on our way up from 50 mcg/hr to 75 mcg/hr but decided to stop here for the time being.

Otherwise, your doc might want to add a different, non-opiate med in addition to the patches. I'm not sure what you've tried already, but there are a lot of options that may or may not work... like neurontin (gabapentin), Lyrica, other anti-seizure meds, some antidepressants, anti-inflammatories, muscle relaxers, topical stuff like lidocaine patches, etc. Or, your doc might want to switching the fentanyl patches for a different long-acting opiate (like long-acting morphine--MS Contin, Kadian, Avinza, etc; oxycontin; methadone; long-acting opana; etc).

Whatever you and your doctor decide to do with the meds, I hope your surgery is at least somewhat successful and that your pain levels improve afterwards.

[norcalmom]

I would like to only take fentaly patches, but right now I am on the max from what I heard. I am taking 100 mcg every 48 hours. So the only other thing they have tried is giving me other pain meds along with the patch, but I feel back to having taking pain pills which is the whole reason I switched to patches so I wouldnt have to take so many pills. Hopefully the surgery helps and they can decrease the patch or maybe the patch will help and I can stop taking the other med. Ive tried many non narcotic meds such as anti-inflammitories, but cannot take them anymore because I started taking them when I was 13 years old started with 600 mg- 800 mg tablets and of coarse without water at that age and now when I take any anti-inflammatories my stomach is in so much pain for over a month. The other anti-depressants makes me too tired and I have to drive my kids to school. For example elavil made me feel hung over the next day and tramadol caused urine retenton for 3 days. I also have sleeping problems at night and just choose not to take any sleep aids because of the side effects. I took ambien for a few months and that medication made me do things I dont remember and that scares me. Ill just have to wait and see what happens after the surgery is done. I just hope things turn out better than the last surgery.