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momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 6/9/2010 1:00 AM (GMT -7)   
Hi everyone.  It's been a while since I updated you all.  I've been having days where I feel pretty good and then days where it feels like the patches aren't working that well.  I went to see my PM dr. on June 1.  She asked how my pain is and I told her that it wasn't being as well controlled on the regular oxycodone as it was on the Percocet.  She told me she could increase the amount of the patch to 50mcg, and I told her I would rather not because I still get pretty tired from the 25mcg.  I asked could she increase the oxycodone from 5mg to 10mg.  She said that she put me on the long acting med so that she could get me off of the short acting med.  I'm thinking that doesn't make sense.  There are many of you here that are on both long acting meds and then short acting for the break through pain.  I really don't understand.  I thought she left me on the oxycodone so that the breakthrough pain would be better.  I'm still confused 8 days later.  Could someone maybe explain this to me?  I guess I'm ranting and asking for some advice and support.  I hope everyone is getting a good night sleep and that you all will have a lpd later when you get up.  Everyone take care.
 
love and hugs
Loretta
Dx:  ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 6/9/2010 7:24 AM (GMT -7)   
Loretta

When you say she put you on Oxycodone in place of the percocets, do you mean she put you on Oxycontin? You see, Percocet is Oxycodone, and Tylenol, and then there is just plain Oxycodone and then there is Oxycodone ER ( extended release) or known as Oxycontin. extended release you take every 8 to 12 hours where as Percocet and regular Oxycodone you have to take every 4 to 6 hours. Ususally when they put you on Oxycontin they start off with a lower dose, and over a period of weeks the will increase it (if needed) untill they get you relief. But with Oxycontin it can take awhile to find out how well it is working for you. I hope this information helps, the thing with Oxycontin, is you have to be very very careful not to break or bite into or chew the tablets, as that can be lethal, because these meds are meant to be swallowed whole. They have allot of medicine in them that is slowly released as it goes through the digestive track. If these tablet are chushed or broken, then they can release all of it into your system at once, and that can cause a really bad problem! Anyway you need to find out what you are on, and talk with your Doctor about all aspects of your pain and treatment.

Good Luck to You

White Beard

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/9/2010 4:05 PM (GMT -7)   
Hi Loretta...

Good to hear from you! I thought you'd been a little quiet lately :) - so it was good to read your update.

Many PM doctors want their patients on either NO breakthrough meds, or as little as possible. They are willing to go up on the long-acting meds, in order to reduce the amount of BT meds needed. Just my opinion - but it sounds like you have a doctor who doesn't like to use the BT meds? But, like you said, it's strange that she left you on them... on then now wants to reduce them? Hmmmm.... But, again, from my own experiences and stuff I've read - many doctors think if you need the BT, then you ultimately go up on your LA meds. Does that make sense?

The PM doc I see is wonderful... Once we finally got my LA established to a good baseline... then we worked on my BT meds. Because, as you know - your "general" pain can be relatively under control... but, then, you can have episodes where you have an increase in pain; thus, the need for BT meds.

So, what ultimately happened? Did she change you to Percocet? Did she just leave you at the 5mg of oxy, or did you even refill it?

What I would probably do, Loretta - is call and either leave a message or ask for an appointment to go in to discuss your meds. I'd say something like "Once I got home from our last appointment, I was a bit confused. The 25mg patch is working well, and I'm happy with that. But I have 1 or 2 times per day, where I have an increase in pain and I need something to help me with that. I don't want to increase the patch right now, because I'm afraid it will make me too tired. Can I please try using the Percocet (or 10mg oxy...whatever you are asking for) for BT and see how that goes for 2 weeks (or whatever). If it doesn't work, then I'll consider the increase in the patch".

I really believe in being assertive - politely, of course - and letting your doctor know what you need.... Ultimately, we are the ones living w/ the pain and not the doctor - so I believe in being your own best advocate. Trust me, I know it's difficult! But I really encourage you to speak up and let her know your needs. If you don't understand why she is doing something, I'd say exactly that.

If it's been 8 days - I think that's plenty of time to call and say "Hey I need help here!".... Anyway, Loretta, I wish you the very best and hope you can get this situation resolved. I was so happy to hear when you got on the patch and they were helping you some, so I hope you can get this BT situation fixed!

Hope you get some rest tonight.... --Tina
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Chronic Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency

Pain Issues: Cervical/Thoracic back pain (they called it DDD...but I don't know); migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation...


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 6/9/2010 5:45 PM (GMT -7)   
I was put on a 25mcg patch that wasn't enough fo me so then it was increased by 12.5 so I wore 2 patches and I felt really good, just had to drink coffee to fight off the tiredness at times. I got used to it and found I hardly needed the BT meds but when I did I had endone 5mg.
I think they put you up to 50mcg or want to, because its cheaper than having 2 patches, I ended up on 50mcg but started getting migraines. Anyway, you definately need BT meds but they do prefer to up your slow release so that the BT becomes less needed. Hope that makes some sense.

Try to talk to your doctor about her thinking, so you understand what she is saying to you. Then you can make some educated choices, best best wishes, golitho

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 6/11/2010 12:16 AM (GMT -7)   
Thank you for your replies.  I think I confused  you guys.  Sorry about that.  My pcp had put me on oxycodone by itself without the Tylenol because  my liver enzymes have been elevated for some time and she didn't want to take a chance of the Tylenol increasing my enzymes.  When I went to see my PM dr. she changed me to Percocet and I didn't say anything because I wanted the extra that the Tylenol would give me.  It did better with relieving my pain so I didn't say anything.  I had to make the appointment where she put me on the patches because I was in so much pain the the Percocet wasn't touching it.  Well, I told her that my liver enzymes had been elevated for some time and could she take me off the Percocet and put me on Oxycodone alone.  Well, she did.  She had me to take it four times a day instead of two like before.  When I went to my appointment of June 1,  she asked me how I was feeling pain wise, and I told her that I was feeling pretty well, but that I was having a lot of breakthrough pain and it was pretty painful.  She wanted to increase the patches to 50mcg and I told her I would rather not because the 25mcg was still making me pretty tired.   She said ok we will leave them where they are. 
 
I asked if we could increase the oxycodone to 10mg instead of 5.  That's when she told me that she put me on the patches so that we wouldn't have to keep me on breakthrough meds.  I just didn't understand that.  I had thought that the point of the breakthrough meds was to help with the pain that the patches didn't cover.  The idea I got is that she didn't want me on breakthrough meds, but to get the patches up high enough so that I wouldn't need the breakthrough meds.  Now I wish I would have let her increase the patches to 50mcg.  I am in a lot of pain tonight and I need more than the patch and the oxycodone can give me.  I feel helpless right now.  I even bit my husband head off so to speak and that's not usually the way I act.  I'm normally pretty loving and not growling at him.
 
I'm wondering if I should call and get an appointment with my PM dr. and get the patch increased.  The only thing is that coffee or any caffeine doesn't affect me at all.  I've tried to drink or eat something with caffeine in it to wake me up or give me energy and it doesn't have an affect.  I'm just so frustrated.  I feel bad for venting here when a lot of you are probably worse off than me.  I just don't know what to do right now. 
 
Could those of you that are on the Fentanyl patch tell me your experience or anyone give me some advice.  I know you have in the past, but could you please help me?  I know you're not drs.  Thank you
 
love and hugs
Loretta
Dx:  ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 6/11/2010 4:33 AM (GMT -7)   
Loretta,

I'm so sorry you are going through this with the pain. I, too, have tried the fentynal patches, oxycontin, morphine long acting and short, and nothing has worked for me. I still get the breakthrough pain, so I figured why am I taking this long acting stuff, when I still have to supplement with the regular pain meds, mine being percocet 10/325. I now take my percocet 4 times a day. Some times it doesn't cover all the pain, but that is not the usual. I have tried to use the long acting pain meds many times over and they just don't do the trick for me. I think some of us are just like that.

I would ask the dr. to try the percocet 10 mgs and see how you do on that. Maybe that will work for you. I have said a prayer for you to find the right med. Have faith. You will figure all this out. But do go back to the dr. and discuss this fully with her again. You need to have your pain controlled and not be suffering so.

God bless and keep us posted. We care. I care.

Lindaloo
Co-Moderator Chronic Pain and Fibromyalgia Forums
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 6/11/2010 5:26 PM (GMT -7)   
 
 
     Dear Loretta,
 
      Good evening *hugg* It is good to hear from you. I must admitt I was rather curious about how you were doing with the patches. Last time you updated you had just begun the patches and they were beginning to help somewhat but not as well as you had hoped. So, knowing that they are still able to make atleast a dent in your pain is bit of good news. Though...I would have hoped you would be getting better coverage by now.
 
     I hate how badly I react to the stronger meds. Its terrible. Is it too much to ask to have decent pain coverage and to not be knocked out by the meds?? Whats the deal? And oh yea, try not to snicker and get angry when you see or hear of someone abusing perscription street druggs for the "high" effect! ...If they only knew...
 
    ..Back to the point! Yes, tiredness! That very aspect frustraites me to no end, especially latly. I was noticing though, that Golitho had said that they had increased her dosage and was using 2 patches, instead of one..then was switched over to 50mg due to cost and overall coverage. I wondering if you would be able to make a transition like that? a 25 & 12.5 at the same time for a few weeks? Slowly increase like that?
  
     I really hope at some point you can come to a solution that works best for you and your body. You have had only partial coverage for a long time now. SUrly that must be very hard on your body. You might want to call the PMs office. Either leave a detailed voice mail for the doctor (not with receptionist) and be specific about A) You ideas for increases of either med (oxy or patch) and B) Your concerns and questions that have been on your mind. OR, you may even want to schedual a general follow up office visit?? A face to face would do just as well.  I do worry that you wont get in an appointment soon enough....  the idea of your continuing to slowing increase in pain each day.... Rather frightening! Waiting like that will only make it harder to get the pain levels down. Will also make it harder for your body recover from the long term pain responses you have experienced daily for over a month now. shakehead   I do hope you can get a call back or an appointment soon.
 
      Give us an update when you can! I hope you can find a few moments to take it easy. Stay strong and know you are in our prayers!
 
*hugg*
   dani
Two roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
Chronic Pain Moderator


momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 6/11/2010 5:55 PM (GMT -7)   
Thank you Linda and Dani for your replies.  I was going to call and make an appointment today with my PM dr and I slept until it was too late to call.  I stayed up last night until 5:15am and I slept later than the office is even open. 
 
Dani I have been wondering what kind of affect this is having on me being in so much pain for such a long time.  I fell in 2001 and this is what started all this mess.  I did have fairly good pain control one time about 4 years ago when I was seeing another pm dr.  I messed up on that when I missed too many appointments without calling 24 hours ahead of time.  They dropped me as a patient and ever since it's been bad.  I saw that dr for about a year or year and a half.  It was so much easier then. sad
 
I hope you're both having a lpd and that you are having a good time on your vacation Dani.  When do you head back home?  I can't remember.
 
Well, i guess i'll go for now.
 
love and hugs
Loretta
Dx:  ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety

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