tomorrow's appointment

[mellie4]

Tomorrow is my appointment with the NP at the pain clinic to talk about my medications and what might work a bit better than what I have now.  My biggest fear with any change is somehow having withdrawals (this irrational fear bothers me so much.  When I get mu appointment with the pain psychiatrist, I will be talking to him about it.)

She had talked to be about the Fentanyl patch and MS Contin in the past but I was reluctant.  Instead we went with 40 mg. oxycontin with 15 mg. oxycodone for breakthrough pain.  I messaged her the other day and told her I was more open to the Fentanyl patch after reading a bit about it and after talking to some people here who have had good success with it..

The way I see it, the choices will be:

Fentanyl patch with something for BT pain.  My question on this is what is the lowest dose patch?  And what is she likely to start me on given what I'm on now (see above)?  Also, if I decide it's not right for me, how hard is it to get off?

We could stay with the same medications and tweak them.  Maybe 60 mg oxycontin and stay with the 15 mg. oxycodone, or stay with the 40 mg. oxycontin and increase the BT to maybe 30 mg.

Do any of these sound like reasonable ideas given where I'm at?  I want to make informed choices and not just blindly into talking more medication.

She did say she was going to present my case to the whole team today, anesthesiologists, PT, OT, NPs and a couple more.

I'm excited and nervous all at the same time.  I so feel like I'm on the brink of finding the right combinations and it would make a huge difference in my quality of life!!

Thanks for any input and thoughts!  You guys are the best!  Sometimes I think I get most of my relief here, at least for my anxieity!

[sandee1818]

I have been on Oxycontin since it first cam out. I started out on 20mg twice a day and stayed on that does for years. I went from lorcet 10/650 4 a day for B/T pain to roxicodone IR 5mg to oxycodone 30mg which I am currently on.
I have only had my oxycontin increased twice since I began taking it. I think that was in 1991. I went from 20mg twice a day to three times daily and then a few months ago I went up to 40 mg oxycontin and 30mg oxycodone for B?T pain. I have tried so very hard to keep my dosage as low as possible as I do realize that I will be on these meds for life. When I changed PM doctors this last time he was very concerned and increased my medications dramatically from oxycontin 20mg 3 a day and oxycodoneIR 5mg to the current regimen I am on now which is oxycontin 40mg and oxycodone 30mg. I was very reluctant to say the least. Every single PM doctor I have had has tried their best to make me increase my meds but I always refused. This last time I was just so tired of hurting that I just said well I will try it and see how it goes. I was so surprised to find that my pain was under control and that I could function so much better. I just have this mindset that I need to cut back every so often and I will take only half of the prescibed amount to cut myself back some.
Their is a point that no higher doses can be prescibed and then you will have to detox from all meds and essentially start over and I don't want to have to go thru this. My Dad who has been dealing with chronic pain ( also an Uncle) has been thru this twice. it is difficult. They were hospitalized and was treated very well thru the process but it is just something I try and avoid.
My point here is that you do need to have your pain treated at a point that you can function but do not be so quick to go to the higher doses or the more potent drugs if you can make it with just a small increase.
I have had my B?T meds increased many times to avoid having to go up with my extended release meds. Of course everyone is different. What I choose is not right for everyone.
I just want to make sure you understand tolerance and that each time you go up you do increase yours and when you to the more potent meds it increases dramatically.
I have always tried to stay on the lowest does possible for me but you may have not have gotten to a point yet where your pain is controlled and I understand this.
I used to see a pain physiatrist and this was probably the best thing I did besides seeing the PM doc to control my pain. He made me realize alot about myself and dealing with chronic pain. I suggest everyone who deals with CP see one. I am glad you are:)

Sorry about the long post, telling you my whole list of meds since 1991:)

[Sarajmt]

Mellie:  I can't wait to hear what your doctor does for you.  Whatever it is I desperately hope it will help you stay out of pain and functioning as a normal human being.  It's what we all want and I hope you achieve it.  

Sherry as always gave you great answers and I have nothing to add.  Just doing some sideline cheering for you.  Let us know how it goes.

Sara

[namnam46]

Hi Mellie,

Sorry I couldn't finish this earlier, but a bus waas going to be coming at 7:00 am. :)

You will no pretty quickly, with in 2 or 3 weeks whether it's going to work for you. The Patch DOESN'T give you a high or any type of a drug reaction like other opiates do. It just takes the pain away.  Believe me you want them to start you slowly so that you don't get more than you need. That way you have a wider range left for you to go to whenever your Pain increases as eventually it will.

I expect mine to go back to the 50 mcg after I have my surgery in the fall. I'm not concerned at all about being able to go down. I don't expect any type of a w/d whatsoever. My pain SHOULD be less and therefore my body will need less. I just wish that they could fix my DDD and ALL of the rest of my Arthritis and then I wouldn't need ANY!! (I love to DREAM BIG!!))) Always before after I've had a Major Surgery I was able to stop my pain pills with NO effects at all. My Dr.'s have been really good about giving me the exact amount I need. No more. No Less. I stopped Tylox after 6 years after my first surgery and NEVER had a problem with w/d. I've been going up and down with this 12 Patch all month and haven't had a problem at all.

If the Patch doesn't work whatever your Dr. puts you on SHOULD take care of the w/d. You shouldn't experience any as you will still have a large amount of Opiates in your system.

Good Luck, Mary. You know that we are all thinking of you....Sherry

[jamlws]

I hope your drs are able to come up with something that will work for you. it is no fun when your on meds and they don't help that much. Sherry has giving you some good info, she is on the patch so she would know. I have heard they are hard to come off of but that is from people that have been on them for a long time.
I hope your drs are able to help you tomorrow at your appt it sounds like you have a whole team looking out for you and that is great.
Jamie

[namnam46]

Hi Mellie,

I have only a couple of minutes here, I will get back to you later today with more.

The smallest dosage of the patch is the 12mcg. Then it goes 25, 50, 75,100. You can combine the 12 with ANY of the other to make any combination you can think of. The highest I've ever heard of anyone being on is 300. That was an extraordinary case.

I have no way of knowing what they would decide would be best for you AND neither will anyone else. None of us are your Dr.s THEY will make that decision today IF they feel that the patch is the right idea.

I've never heard of anyone starting on the proper dose the VERY first time. That would be pretty unusual.

Yes, you definitely need a BT med with it JUST as you would with any long lasting med.

Hope this has helped you some.

Have to get a Granddaughter ready for Summer School Now.  :)

Talk to you later...Sherry

[mellie4]

Also wondering what dosages the patch come in and what's the most likely dose to start with.  (I have trouble worrying ... will it be too strong, not strong enough?)  Has anyone ever started with a dose and that was the right dose right off the bat?  Do most people need BT meds with the patch or is the patch enough on its own?