How to ask for a long-term med w/ a breakthrough med

[MamaAng]

I have been on hydrocodone 10/500 for 18 mths (5/500 before that for 6mths).  I recently ended up in the ER when my L5S1 disc bulge became a large herniation sitting on my sciatic nerve.  As a result the ER doc gave me a fentynal patch and told me to use my hydrocodone as breakthrough.  It worked pretty well.  I went to see a doc in my Pain Mgmt group the day after the ER visit and he took me off hydrocodone and put me on 15mg Oxycodone 4x daily.  It works but by hour 6 I am in a lot of pain.  I want to ask about possibly finding a long acting med and using a breakthrough with it, because it worked so well with the fent/hydro.  I am worried about stirring the pot by making such a direct request, but it worked!  It took my level 9 pain down to a 4 and then I had the option of help if it the pain flared up.  

Any advice greatly appreciated :)  

[MamaAng]

Exactly!  With the Fentanyl patch I am able to greatly reduce my need for the oxycodone to 1 or 2/day.  The oxycodone itself works drastically better on the pain.  I have not had the ups and downs nearly as much with my pain levels.  I was starting the day at a 7, took meds, went down to a 4, 4 hours later back to 7, wait 2 hours, take meds, back to 4.  It is exhausting to be all over the place.  I am anxious for my appt on the 27th.  I will definitely be asking what measures we can take to achieve the results that the ER regiment blessed me with.  I will be sure to update afterward.  I have the fentanyl patch on now and have to remove it on Thursday.  I think I am going to deep clean my kitchen for the first time in several months while I have it on because I am that confident that I will not end up spending 3+ days in bed as a result.  Ooooohhhh, to be able to clean is one of my most important wishes.  I am a homemaker and have had a hard time not having everything neat, tidy, and clean enough to eat off of!

[Tuckamore]

Ang,

I had been on hydrocodone for years for severe and disabling SIJ Dysfunction. It often didn't touch the pain. My physician had prescribed several long slow release (SR) opiates but the side effects were not tolerable so I remained on just the Hydro.

I'll shorten a long story by saying that a few months ago I permanently injured a previous very damaged area and required hospitalization. It has produced even more pain, much like an immediate post-op pain. It was at that time that I was prescribed OxyContin which as you know is a SR opiate. I cannot beleive the difference in the pan control. The highs and lows have greatly diminished, though I admit I can tell the difference when I am approaching the 9-10 hour mark for the SL med.  

Given your diagnosis I would think that a SR opiate is in order. I hope your physician will agree. You may require the Fentanyl patch. It has been very effective for a lot of CP sufferers.  There may be other SR that will work as well for you but as you know it's all trial and error. There is no good reason to struggled with severe uncontolled CP. If you haven't already be sure to relate your ER medication experience with your physician. An effective SR may even allow you todecrease the IR (immediate release) med for break through pain.

[JadedSweetheart]

Oh, I see.  Wow.  Thanks for sharing about that.  I'm glad they were able to diagnose it for you.

[MamaAng]

Yes, I had to transfer from the small ER by my house to the larger ER in town because I needed an emergency MRI, which showed the herniation (it was w/ and w/o contrast).  They then compared it to my Aug '08 MRI and put the puzzle together.  I had an LESI (Lumbar Epidural Spinal Injection) 4 days prior to the ER visit.  I had been in pain for two full days when my husband noticed that my entire lower back was swollen and my SI joints were literally sticking out from the inflammation.  He took me straight to the ER and they were very concerned that it may have been an abscess, that is why they sent me for the MRI right away in the middle of the night.

[JadedSweetheart]

May I ask how they found out about the herniation in the ER?  Did they do diagnostic testing while you were there such as an MRI?
I have been to the hospital a few times when I thought something happened to make the pain worse, such as a worsening herniation or a bone breaking, etc.  When the pain has just gotten so out-of-control that I just don't know why.  
They generally might do a CAT scan or something, but they have never done an MRI.
I am just curious as to how they determined the disc herniation happened then.
Thanks!
PS.  Welcome to the PM forum!  I hope that you feel free to join in and continue as a member. :)

[MamaAng]

thank-you all for the wonderful feedback.  I take my meds every 6 hours around the clock.  I set my cell phone alarm for the midnight doses of gabapentin and oxycodone.  If I keep it in my system I do much better then if I sleep all night because I wake up in horrid pain and have to wait an hour to get out of bed while the meds kick in.  I learned the hard way on that one, and if I forget to set my alarm my whole day starts off badly.  It may seem like a pain in the neck to get up and take them but it really isn't.  I keep them on the bedside table with water.  

I am going to go ahead and take the pills with me and ask what to do with them.  There are only 15 or so left, I was due to refill when all of this happened.  

The ER doctor gave me the fentynal patch because the dilaudid they gave me through the IV didn't touch the pain.  I had been on hydrocodone for 2 years so I am opioid tolerant.  He gave me a prescription for 3 and sent me home with one placed.  I have used them during this acute phase of this herniation because the pain has been so unbelievable and the PM doc said that was fine, I took it off for a couple of days and the pain was back, and roaring, every 4 hours which is why I asked this question.  

Thank-you for the support with the surgery issue, too.  I refuse to jump the gun if we can get it under control and back to a baseline with meds.  Surgery scares me, the bad outcomes seem so severe.  I am hopeful that things can be done conservatively for a few more years so that my kids can be older and more self-sufficient when the time comes.  Medication dependence is something I have learned to accept because it greatly enhances my quality of life, which I am sure is the case for many of us.  As long as it is keeping the pain at a reasonable level I will keep doing PT and the other conservative measures that have kept me out of the OR for the past 2 years.  This last herniation was a big one.  Nothing prepared me for that.  One day at a time...

[mellie4]

I'm somewhat surprised the ER gave you the Fentanyl patch!  I think normally they give you a stronger dose of medication you're on or they give you something in an IV and then send you home, in both cases to follow-up with your own doctor.

I recently started the Fentanyl patch after a long time trying to find meds to work for me.  And even though I was very reluctant to go on it, it's been a really good fit for me.  I take oxycodone for the BT medication and together, most of the time, they have me at a manageable level.

I never ask for anything specifically, but my pain clinic NP always goes through all the options available and we discuss it together. She'll tell me why she's recommending one over the other, and I'll let her know what my worries are about a specific medication.

I've had several occasions where I've tried a medication and after a few days or weeks decided it wasn't a good fit for a variety of reasons.  In those instances I asked what I should do with the leftover medication and I've always been told to get rid of them myself.  Never have I been asked to return them.  (Truthfully, I think it's sort of a pain for the clinic when things are returned.  I believe they have to fill out tons of paperwork so they'd rather I get rid of them myself.  And they have given me suggestions on what do do to get rid of them.)

[JadedSweetheart]

Different doctors prescribe medication differently.  Some may say take every 3 hours, some every 6.  My question is.. Are you awake for 20 hrs a day?  Or do you take the last one right before bed?  Generally if I have a medication that says 4 a day, I spread them out depending on my pain levels.  Like in the morning I am generally ok and can go longer intervals, but in the evening the pain sets in hard and need the meds at shorter intervals.  Of course, It's something I've talked to my doctor about, though.

I also had a similar issue in that I was on oxycodone and I couldn't understand why my doctor wouldn't just put me on something long term with BT meds.  The best thing to do is to ask them why they prefer the one style of PM to the other.

As far as the extra meds, I always believe honesty is the best policy.  It's good to build up a level of trust with the docs.

[Tuckamore]

Good question regarding returning the Hydrocodone. I would take it with you and ask him if he would like to destroy it....or what he would like you to do with it. You might ask if he thinks he would re-order it before it's expiration date as to not to waste money. I'd let him make the decision.

I agree that you should inform him that the current meds are not lasting 6 hours. However the explanation of how it effects you is always helpful. I had the same issue. My physician than prescribed mine every 4-6 hours. In times of extreme flares I have taken them at 3 hours and 59 minutes!  That minute makes me feel better. :)

I have no doubt that you take your medications responsibly. That I know of, we all do. We are not addicts or abusers. We are chronic pain patients that are dependant upon narcotics to obtain some degree of normal functioning in our lives. There is a huge differance between addiction and dependancy, as I am sure you have learned.

You are approaching the possibility of surgery in the right manner. Educated and informed decisions are always the best, and only decisions to make in my opinion. Surgery can be very effective for some ppl. However there is never a guarantee to the degree that it will relieve our pain.

Whatever your decision I wish you the very best. I am hopeful that you will remain active in our community and share your decision process with us.

[MamaAng]

I was referred to the orthpedic surgeon first, I will get a 2nd opinion from a neuro before I decide what I am going to do.  I am not, at all, sold on surgery.  That is beside the point :)  

[Jaybay]

Just tell your doctor that the oxycodone wears off too soon and ask him about something that works longer rather than stronger, and see what he says.  Have you spoken to a neurosurgeon about surgical treatment for the disc?

[MamaAng]

Tuck,
Thank-you for your response.  Yes, I have been in a great deal of chronic pain.  I have had 6 LESI's and I see an orthopedic surgeon for a consult on Thursday.  I have never asked for a med change, ever.  I was so relieved when the fent/hydro worked.  I don't necessarily want to be on Fent.  I would like to be on something that lasts longer and have a breakthrough for the pain that comes through.  The immediate release oxycodone wears off by hour 4.  Then I have two hours to get through to get to another dose.  I never abuse my drugs.  I will find a way to get to that 6 hours mark.  I meditate, stretch, take a shower, ice it, whatever it takes.  I hate to even ask for this from my PM doc but I also don't want to be in pain every 4 hours.  I have an appt. on the 27th and I will update afterward.

I have 15 or so leftover hydrocodone, should I turn it in to the pain clinic when I go for my appt?  It doesn't say I have to do that in my contract, but it is a measure of good faith.  What do you think?

[Tuckamore]

Hello Ang,

Welcome to the Pain Mangement Forum. Thank you for taking the time to post. Your pain must be extreme and I am sorry that you have to endure it. We all understand chronic pain and how it can reek havoc in our lives.

I don't think there is a good way to ask for a specific opiate. you are right to be concerned. I find it best to explain your pain level in detail. Inform your PMP how it effects you activities, your sleep and your ability to function "normally" and any changes this pain has caused in your daily life.

After you are certain your PMP understands what you have shared with him, ask for his help and advice. Let him make the suggestions. And try what he recommends.

I have never asked for a specific narcotic. I have always let my physician determine what opiate medication I will take. It's been a trial and error process which is usually the best way to discover the right medications or combination of medications to manage your pain.

You are young. If you are looking at long term pain management through opiate therapy your PMP will rightfully be concerned with future tolerance. Fentanyl is a very potent and effective opiate. There are not a lot of good choices once you become tolerant to it. So please keep that in mind.

I hope you will let us know the results of your next appointment. I am sure your pain is severe and believe you deserve good pain management, better pain management than you have currently. I'll look forward to your updates and wish you the best of luck.

Take Care,
~Tuck