Please Help! Butrans Patch - So many questions.. all still unanswered.

Hello All -

This is my first time posting, but have used this forum for years to get answers to questions about my pain... Medication... And everything else in between. I did try to search and see if there was anything current that would answer my questions, but I haven't had much luck. That being said.... Here goes:

My pm prescribed me the 20mcg Butrans patch on Thursday for pain relief. I put it on at 8pm that day, so I just hit the 48 hour mark. So far, I've had no relief.. Or nothing noticeable, anyways. I couldn't even get out of bed. I was given this medication without any real info on how to use it, how it works, etc. So, I'm here with the hopes that someone here is experienced with it, and can help me out a bit.

Here are my questions:

- Was I supposed to stop taking my other medication before starting this patch? I have read about a lot of people having withdrawal symptoms... I haven't felt any withdrawal symptoms yet, but I'm hoping it's not affecting whether or not this medication will work. Then again, I'm still taking dilaudid for BT because I am barely able to function.

- I had bad side effects with a trial run of the 100mcg Fentanyl Patch, so it was removed after 2 days of use... And replaced by Butrans 3 hours later. Will this screw anything up?

- Is there any kind of real average for the actual onset of Butrans? I've read ranges from 30 minutes to 2 weeks.. That seems like quite a stretch. For those who have Butrans successfully, how long did it take for you?

- As I understand it, opiods can be taken for BT pain, but may not be as effective or you may not "feel" them as much. Is this correct, or am I misunderstanding?

- Overall, for those with experience.. Did you stick with Butrans, or end up switching to something else? Why/Why not?

Sorry for all the questions... I just want this to work SO bad.. I've tried almost everything there is and I'm terrified I'll never have a fully functioning life.

Thank you in advance to anyone who replies. I appreciate your help more than you know.

Thank you so much for getting back to me so quickly. Your answers definitely helped. I did see a few threads that answered most of my questions, but I guess I felt like I needed more details on the ones I asked above. But you definitely cleared up a few things for me, and I really appreciate you taking the time to reply.

I'm going to look around some more and see if there's anyone else who's got similar issues pain-wise and what ultimately worked for them. After a few years of trying different combinations of different things (narcotics, physical therapy, homeopathic remedies, acupuncture, "sucking it up", etc.) I'm just desperate for anything to work. I feel like I'm close to running out of options and it's definitely got me feeling a bit defeated... But, I know I have a lot of things to be grateful for and that's plenty to keep me going and keep me patient enough to keep trying, failing, and trying some more until I get the most effective treatment possible.

I'll be sure to ask my doctor some of the questions above tomorrow, and find out if he's got anything to share that's worth contributing back to this thread. I doubt he'll offer up much, but I'll happily share if it may help someone else one day down the road.

Thank you again for all of your help! I hope you have a nice rest of the weekend. :c)

Jess - I am currently on butrans 15 mg. It actually worked so well for me the first few days that I tried it, I thought all my problems in the whole world had been solved, lol. I also started out with the 10 mg patch and dilaudid for BT pain, but that combination was BAD for me, headaches, nausea, it was terrible. So now I'm on the 15 mg butrans with percocet 10s 3x per day for my breakthrough pain. I would say that it's working OK. I really wish I could take the percocet 4-6 times a day because my breakthrough pain is really bad, I can go up to an 8 in no time at all and stay there for hours. You may want to ask about percocet for BT pain instead, although, to me that kind of defeats the purpose of the patch. I figure I need to stay on it for at least a month before talking to my doc about switching.

The dilaudid (4 mg) did NOTHING for me when I was on the patch but I can definitely feel the percocet working. Which is odd considering that dilaudid is so much stronger than percocet. I don't know, oral dilaudid has never really done much for me pain-relief wise, and it is very short-acting when it does work. When I've had surgeries the nurses have always been surprised when I'm RX'd dilaudid in the hospital and I ask for IR Morphine instead because it's so much "weaker" (I think dilaudid is 8x stronger than Morphine).

The last few days before I change the patch are pretty bad pain days. My doc said I can change it after five days. Someone recently told me that butrans will be available in the states in other formulations besides transdermal, as it is in the UK. Like pills or sublingual strips. To be honest, I kind of hate being a person who tries a fairly new medication. I worry about it being recalled or taken off the market in a few years, lawsuits, that kind of thing. I guess I watch too much late-night TV, lol, with all the ads promoting the class-action lawsuits.

It's very interesting that there is a lot of conflicting info out there about whether or not Butrans lessens the efficacy of breakthrough opiate meds. My doctor told me that since there's no naloxone in the patch, it doesn't work that way. I don't really believe him though, because I can tell that my breakthrough meds don't work as well with the patch on as they do without. Jess, I also received the med with very little instruction. The first one I put on fell off and I kind of freaked out because there was no way I could prove it to my doc, but they didn't question me. If you have a problem with yours coming loose, use Tegaderm over it, works like a charm.

I'm also recently (after being on it about 3 weeks) having a LOT of itching and some pain at the site where I put the patch. I mean A LOT of itching, so bad that I'm afraid of scratching the patch off.

As you may have read in other threads, I medicate with medical marijuana as well, and without all three, the patch, percocet, and the MM, I'd be in bed all day most days. And honestly I believe that I get the least relief from the patch. It is so much easier though because you don't have to keep track of any pills.

My next move is to perhaps ask about a fent patch or a pain pump. I really like the idea of not taking any pills (or minimal amounts). Just makes life easier in general, y'know?

Did you post an introduction as a new member? I see adenomyosis in your signature, and that's something I've been diagnosed with (hysterectomy 8.29.14). I would love to learn more about your story. Hope my experience can help you.

Post Edited (Backtolife) : 9/7/2014 6:31:49 AM (GMT-6)

Hi Jessa & welcome to the forum. Don't give up on finding something that will give you some relief.

I have not seen one person yet that could control their pain with Butrans & a BT med. I know BLT says its working for her but on the other hand she is also using MM so that contradicts just how well it does work for her because she is adding something to it. If she was strictly on Butrans & a BT med she may not be be so quick to praise the Butrans. Vickie was put on Butrans to help lessen the withdrawals when she was getting off of Methadone. The Butrans had no affect on her pain levels at all. You may or may not have found her post about this.

Make a list of questions for your dr & keep working towards something that will help you. Keep us posted on how you are doing.

Hey Jess and Welcome aboard=)  I see that you are suffering with some of the same issues as me.  I just want to say that I, too, am searching for answers to my pain.  I tried to cut/paste my journal page about my recent months of struggle.  I don't know if the post was successful, as I failed with it a few days ago.

I have no experience with Butrans, other than a prescription for it.  An "endo specialist" at UT wrote it for me last Fall.  I never filled it because CVS quoted $500.  I'm glad I didn't start with it, after reading some of the posts.  I did try Fentanyl in 2005-06, but went through HEAVY WD before the patch change @ 72 hours.  I needed 48 hour dosing, but 9 years ago, they wouldn't consider it for me...So I QUIT PM entirely.  I'm back at PM again, but am resisting the patch for now. (long story)

IF you're not getting good results, please talk with your PM doctor asap.  I understand your pain.  Ours is a suffering that those without this disease can NEVER understand.  It's hard to distract yourself from gut-wrenching pelvic, vaginal, rectal pain when you are bloated, cramping and distended...often trying to deal with bladder issues and migraines.  You know what I'm saying.  You are in the same boat with me...IF meds are strong enough to even "ease" the edge off the pain, they are sedating and mind-fogging, at best.  It's a crying shame.  I don't think we learn to "live" with this disease...We learn that it's taken our life away=(

HUGS~~Dixie

Jessa, sometimes it is best to be referred to some one new to take a look at the situation. I would have thought if 60mg a day of Oxy was too much, then cut it back to 40mg & see what happened. I will throw out this, with the restrictions & guidelines the drs are working under concerning chronic pain & you being so young, this may have played a role in his decision. I am not saying its right, but we do see & hear all the time how young people are not being treated for chronic pain with much than Tylenol because of the age factor.

In the meantime, get online at Vitals.com & see what you can come up on your own. If you find someone that may be worth consulting with even your primary care dr can make the referral or have the current PM dr refer you. I honestly would think your current PM dr would continue seeing you until he can get you with someone else. Did he tell you not to schedule anymore appts with him?

Good luck finding a better doc. Yours sounds like not a very good one anyway, if he's not willing to work with you to find your best "cocktail". All meds are different for all people, depending on their metabolism, etc. I finally found the right anti-depressant with my psychiatrist because she knows so much about how different drugs interact with different bodies and I have one enzyme that really is higher in me than in a lot of other people, and she connected the dots with all the meds we kept trying that had this one ingredient that affected that enzyme. Therefore she tried meds that do not affect that enzyme and voila, my depression has been well controlled for almost two years.

I wasn't really PRAISING the butrans patch, I'm just saying that at first it worked for me. I'm pretty sure it's not going to be part of a long-term(ish) solution for me. But, I'm also thinking my doc will want me to go up to the 20mg strength before bailing on it. Fine with me.

Thank you, Back to life.

I agree - I need to find someone better anyways. Just like with the Butrans patch.. After roughly 48 hours of the Fentanyl patch, I was told to take it off at 5pm on Thursday. At 8pm, I was putting on the 20mcg Butrans patch. No reason given for being started at the max, as opposed to say the 10 or 15, just given a script for the 20mcg and told to put it on. I still firmly believe this somehow screwed with its overall efficacy, and am going to give it another chance when it's time to change it. At this point, I figure it can't hurt.

I've got nothing to lose, and I'm pretty confident I won't be getting prescribed anything else for at least a few weeks. My PCP is strongly against the medication I'm on and thought it was too much.. so I know she won't offer any help. My OB/GYN is the one that told me to go to a PM because they were not comfortable with providing long term pain medication to me, and would only provide it after surgery for a limited amount of time. So, it's back to square one. And I'm okay with that as long as I see someone before I'm in the fetal position dealing with withdrawal - I have done it twice before (because I hoped I could just live without any pain medication.. clearly didn't work) and I don't really even want to start thinking about the possibility of going through it again. But I will be sure to limit my remaining meds as much as possible to try and stay afloat.

And I am happy to hear it's providing you relief. I know that's all anyone can even ask for around here, right? When I read posts here, it seems like everyone is one the same page. We don't want to be high, incoherent, stoned, or looking/feeling/acting like complete and total zombies - We just want the ability to function on the same plane of existence that those without chronic pain do. If it ends up working with a few tweaks for you, then keep at it! That's definitely my plan if I'm able to find something. Why fix something that for once, FINALLY isn't broken?

Best of luck to you. Thank you again for sharing both your story and your insight. I have definitely gotten quite a warm welcome, and am beyond thrilled to have so many s resourceful and knowledgeable people respond and keep me headed in the right direction. It's appreciated more than I can put into words.

Take care, Jess.

I think that Vicki is probably right, it's not really the Butrans that's helping me. But, to echo what she said, you don't have to worry about physical w/d because of the Butrans. Good luck and please keep us posted. I really want to hear your whole story because I too have been diagnosed with adenomyosis and want to know what you went through. Best!

The new doctor nearby is GREAT news, Jess.  I hope that he is caring and compassionate towards you.  My PM is just shy of psychotic, but for now my only option.  He told me from the beginning "I DO NOT TREAT PELVIC PAIN, but I'll treat your pain with spine and bone on bone issues.  Pain is pain."

I find that with endometriosis (stage 4 for me)...It's the raging disease inside us that no one sees.  I look fine.  I act fine.  I hide it well.  Yet when appealing for help with debilitating pain, I'm scoffed at.  I sometimes wonder if the pain inside were gushing forth blood like a slashed femoral artery, would the doctors try to save me?  Or would they argue that I'm too old to bleed out?  Crazy stuff.

I would just be honest with your new doctor.  It helps me to have my notes.  I am so anal retentive that I keep a binder of my medical records.  When the shingles virus attacked my right eye/forehead/scalp (now 14 weeks) I took pictures of the horrid outbreak and gave copies to my PM.  He actually "thanked" me for those and asked if he could keep them for his records.  Again, CRAZY, because he had rimmed me in May for taking him a 5x7 photo of myself so that he could know who I was. (LONG story posted under Endometriosis in CP forum)  I digress.

Make notes of your pain.  Some people keep a pain journal, but I don't.  It helps if you can tell him in detail of where, when worse/better, what has/hasn't given relief.  I am concerned that you were catapulted to Butrans.  Your doctor will know whether or not you need an "opiate holiday" to reboot his treatment plans.  I'm thinking of you and feeling your angst and trepidation.  One more thing...I'm painfully aware that this disease does not reveal itself through standardized diagnostic testing.  However, records of diagnostic laps and procedures performed thus far will also be helpful.

HUGS~~Dixie

  Hey BTL...How are you today?