My PM treatment - chronic pain from pancreatic tumors

I haven't been on here for a few months so I thought I would make a post to update my situation and I have a couple questions as well.

So I was diagnosed with Crohn's disease about a year ago and during a routine EUS(my first one) that the doctor was doing to check for damage to my stomach and beginning part of my small intestines, tumors were discovered in my pancreas.

The tumors are benign...the doctors are calling them functional neuroendocrine tumors. So I have all these digestive symptoms like chronic diarrhea, acid reflux, cramping and I keep having a severe infection, colitis, come back over and over again.

My intestinal/pancreatic surgeon is wanting to hold off on the surgery to remove the tumors for some reason. I really wish he would just do the surgery already, but until then all I can do is get treatment for the symptoms.

Here are my meds right now:

Fentanyl 50mcg/hr patch
Tramadol 50mg 2 tabs 3x daily for breakthrough pain
Gabapentin 1800mg/day
Lomotil 2.5mg 2 tabs 3x daily
Valium 5mg 1x daily
Celexa 40mg 1x daily
Atenolol 50mg 1x daily
Levsin 0.125mg 3x daily as needed
Zofran 4mg as needed

These meds I am prescribed during a colitis flare-up if not hospitalized:

Prednisone 60mg 1x day for 10 days
Flagyl 500mg 3x day for 10 days
Cipro 500mg 2x day for 10 days

So about the pain management. I found a good place kinda close to me and I had to wait about 4-5 months for my first appointment. The first appointment they only increased the gabapentin from 900mg per day to 1800mg per day and took over prescribing the tramadol I was taking. At the second appointment I was put on 25mcg/hr fentanyl patch(my pharmacy dispenses the Watson brand). Two weeks later I had an appointment and the patch was increased to 50mcg/hr. I have an appointment this next Tuesday, Sept. 2.

I feel like the strength of the patch is about right and this has made my life so much better than it was. I am actually able to get out of the house and do some things now. The only issue I have is the patch seems to start losing the pain relieving affect after 2 days instead of the 3 days it is supposed to last. Also, the tramadol obviously doesn't work for my breakthrough pain now since my tolerance has been increased so much. I even have some left over Vicodin 5-325 and 2 of those doesn't help with BT pain either. So I am going to ask my doctor if it is normal for the patch to wear off after 48 hours and if she thinks I should have something for BT pain that actually works.

What do you guys think? Is it normal for the patch to lose the pain relieving affect after 48 hours and should I have a BT pain med and which ones would actually work?

Thanks!

I guess I will just let my PM doctor know about it not working as well that 3rd day. I've only seen her 3 times now but I am trying to be completely honest about everything. She seems to trust me and really want to help. She told me at my 2nd appointment after really getting familiar with my medical problems and my complete chart from all doctors that she is going to treat this a lot like cancer pain. She said in a situation like mine that the pain level is very similar to cancer pain but it is confined to one area of the body where in cancer patients they can have severe chronic pain all over their body.

I tried to just tough it out for over a year with minimal pain meds and finally I had to give in and let one of my doctors refer me to pain management. I had actually declined it 2 times before.

Going from the max dose of tramadol with a little vicodin when needed straight to fentanyl I thought I was going to be really drugged up but I guess because of the level of pain that the medicine is just working on all the pain and not causing those drugged up like side effects.

She gave me 3 options during the appt that I started the fentanyl. She said I could start Oxycontin, MS Contin or the patches. I chose the patches because I just hate waking up in the morning in a lot of pain and having to wait for pills to start working. Now I wake up and the medicine is still in me and working so I can do whatever I need to do first thing in the morning.

I've also got to speak with her about my anxiety/panic disorder at this next appointment too. I was doing good on just antidepressants before all these problems started, but since all this happened it has been horrible. I probably have 3-4 full blown panic attacks every week. Right now I am only taking 5mg valium once a day as needed. She said before that she will work on that but she wanted to take care of one thing at a time and the pain was the biggest issue.

So I will update on Tuesday after my appointment. I am hoping this appointment will have all the meds figured out and not need anymore changes for a while.

We have had several people that their drs rx'd the Fentanyl to be changed every 48 hours. Back when I was on it that was the drawback to it for me. By day 3 I was in withdrawals & it just was not much fun.

It does sound like you have a good PM dr, so hopefully she will be aware this is a problem for some people. Let us know how it works out. Take care.

I'm trying to stay away from the oxycodone if possible. I've never had a drug or alcohol problem, but I don't want to start now and from my understanding oxycodone produces the most euphoric feelings out of most all of the opiates. I really hate hydrocodone as it gets me wound up and I become very irritable. I'm wondering if maybe there is an immediate release morphine tablet or something that I could try if my PM doctor wants to start a BT pain med.

How bad are withdrawals with the Fentanyl when you don't need it anymore and it is stopped? I am a little familiar with withdrawals from Tramadol from being on it in the past for long periods of time and then just stopping completely when not needed anymore. I am assuming it is a lot worse than that medication? I'm a little concerned about getting off of it when it is time but also I am concerned that if something happens that causes me much more acute pain at some point then nothing would work anymore to reduce pain? I almost wish now that I had tried the MS Contin first instead of going to the patches straight away.

When going off of any medication that has been used long term tapering down is the wisest way of doing it so that you don't have withdrawals. I am surprised that you didn't have some major problems when you quit the tramadol..

Hi Markh,
I'm glad that you are reconsidering Oxycodone IR for BTP. I've been using it as either a primary pain med or for BTP for 8 years but could, and have quit for two week periods at will. I agree with you, the sensationalization of it on the news has made a demon out of a very useful drug. For me the only side effect is mild constipation, I am no longer regular but still poop every day instead of just once in the AM. Some people would consider this TMI but we're dealing with your body. Some people have reported 3-5 day intervals which would be awful. Personally, my best pain relief was on the patch, Fantanyl, ans Oxycodone. I am now on basically the same thing just jiggled around a bit . . . I take Oxycodone for 6-10 hour relief and Fentora , fentanyl IR for BTP. I have found that ERmeds don't agree with me and that the Oxy IR lasts a long time when extended with Fentanyl. This choice I would not recommend to you or anybody, it just works with y oddball metabolism.
I totally agree with you on Tramadol. It is a worthless med that is out there just to make it sound like a "safe" substitute for Oxy, just like Nucynta. Since you brought it up I thought I would tell the forum my feelings towards these meds, they are expensive placebos with the added problem of some bad SEs like nausea and restless legs as you pointed out on WDs. As I recall, you are on 50 mcg patches, right? I would ask for 10-15 mg Oxy without Tylenol as BTP meds. The stronger med will help with the sometimes " running out" feeling that people have reported on Fentenyl. I never had that problem . Best wishes . . . Q

So I had my appointment today and I think this is pretty much sorted out.

I got a refill on my 50mcg/hr patches but for changing every 48 hours instead of 72 hours.

I was also switched from the 5mg Valium 1x daily to 1mg Klonopin 3x daily so hopefully I will have less panic attacks and my overall anxiety level is reduced.

No mention of BT meds from her today. I didn't mention it either because I don't want to sound like a drug seeker to her. I can get by with occasional spikes in my pain level and I think changing the patch every 48 hours should help to lessen these, especially since that 3rd day is the day I have the most breakthrough pain episodes.

Now I just need to get the prior authorization stuff done for the patches through medicaid because I cannot afford $300+ per month for them. I can't pick up the refill of my patches until Friday (Sept. 5) so hopefully by that time it is all sorted out.

I think the better anxiety control and the fact that this dosage of Klonopin is designed to prevent panic attacks from occurring in the first place. Will help a lot more in the overall treatment of my pain.

The two...Chronic Pain and Anxiety/Panic Disorder seem to cause the other problem to become worse. For example...if I have a very bad anxiety day and I have one major panic attack or even 2 minor attacks, my overall pain level seems to increase. Opposite of that...If I have a bad pain day it can drive me into severe anxiety symptoms and multiple, terrible panic attacks.

These illnesses seem to be linked in some patients when one can potentiate(make worse) the other. I'm hoping that the combo of a preventative dosage of klonopin and the 50mcg/hr. Will improve my condition even more.

If I am still having nearly unbearable breakthrough pain occasionally(though not nearly as after as on the 25mcg/hr and obviously when I was either taking Tramadol or Hydrocodone as needed....at my next appointment(in one month), should I straight up ask for a BTP med or wait for her to offer that on her own accord?

Thanks!
Mark

Thanks for the reply. I realize that my pain will never be 100% gone unless, of course, the surgery on my pancreas is a success and all these symptoms including the pain start to subside.

Talking in terms of the 0-10 pain scale, I would like my everyday average pain level to be a 4 or lower. Right now it is at about a 5 and before I was seeing this PM doctor it was around 7-8 with spikes of 9-10. My breakthrough pain levels right now are around about a 6-7 so I think eventually I will have a serious discussion with her about a BT pain med. I wouldn't need a lot...probably just a monthly prescription of 30 doses--1 dose per day.

At this last appointment though, the most important thing that needed to be discussed was my anxiety/panic disorder/agoraphobia. The Klonopin 1mg 3x daily is helping a lot and I haven't had a full blown panic attack since I started the klonopin again. I really think that the Valium 5mg is not a good medicine for controlling panic disorder. It was more of a rescue med after one had already started and probably 90% of the time 5mg didn't stop the panic attack.


I have one other concern...When I do have surgery to remove the tumors in my pancreas, what should I expect as far a post-operative pain since I am already on Fentanyl and will have a tolerance? Would the hospital just keep me on the patch and maybe bring me an injection of Dilaudid every few hours as needed? I don't know how the surgery will be done, but I am assuming similar to the "Whipple Operation". Will the doctors be able to control post-op pain from a procedure like this with a patient whom has been using 50mcg/hr Fentanyl patches for a period of time of at least a few months to a year?

Markh, I agree with Abiline, get your PMD involved in these questions. I know nothing about surgery, i had an appendectomy 40 years ago and that is it . . . Q

Thanks for the replies. My PMD hasn't really been mentioning anything at all about breakthrough pain meds, but there are times I wish I had something. Should I just straight up ask for something to take when my pain "breaks through" the fentanyl? Or should I hint at it by telling her that I have a lot of spikes in pain that the fentanyl patch doesn't cover and let her ask me if I want an IR med and again let her mention which ones I could try?

I also probably shouldn't mention one specific drug that I would like to try right? I mean I shouldn't go in saying I think I need something for breakthrough pain, can I try Dilaudid/Opana IR? I absolutely cannot take hydrocodone(Vicodin) because it makes me extremely irritable. So that leaves Oxycodone IR, Dilaudid, Morphine Sulfate IR and Opana IR right? I do not want to go to one of those OTFC(oral transmucosal fentanyl citrate) meds at all.

I also want to stay off the Tramadol since it no longer helps with pain of any sort anymore now that I am on the 50mcg/h fentanyl patch and if I do take the Tramadol even semi-regularly then I get W/D symptoms after stopping the Tramadol even if I am on another opioid like Fentanyl. Tramadol is EVIL. LOL

Well the reason I am saying Tramadol is evil is not for the reasons you are probably thinking. Before I started the fentanyl patches, Tramadol did work and did provide some relief with 2x 50mg tabs 4x daily. The reason I say it is bad is because it isn't considered a very strong painkiller and isn't supposed to be super-addictive, but when stopping the Tramadol cold-turkey the W/D are absolutely terrible in comparison to how strong the drug is when it comes to relieving pain.

I think the W/D is so bad because you are experiencing withdrawal from both an opioid and an SNRI at the same time...so the withdrawals are horrible.

Yes, I think the SNRI properties of Tramadol cause such back withdrawals.