TO DOXY & OTHER "PATCH PEOPLE..." Please read...

Discussion in 'Fibromyalgia Main Forum' started by Leaknits, Nov 15, 2008.

  1. Leaknits

    Leaknits New Member


    First off most anyone who has "read me" has heard about pain until they likely want to smack me.

    The leg-breaking fall all those years ago WAS my fault.

    The lousy surgeries afterward were not.

    According to a massage therapist I've known for years and trust almost more than I trust myself said "Lea, that fall twisted and jammed the upper part of your femur into the joint."

    Actually after all this time I don't recall clearly whether she said "joint" or "socket."
    Whichever it was, the result of the fall, break, surgical doings, and jamming make it so that the left leg is an inch shorter than the right.

    Great for walking around hillsides, old joke, but no fun at all for the Old Joke sitting here.

    Pain. 24/7 pain after years of explaining to "Oh yeah-"mode drs, their PA's, the rip-off company that caused taxpayers to have to pay much too much in support of MedicAid/MediCare so that I could get a powerchair and not hurt quite so much when having to go anywhere.

    Hold on, I'll get to the question(s?) eventually.

    Current dr says that my MediCare Plan D, a non-helpful thing called HealthNet Orange, will not allow him to order more per 24 hrs than my current allowance of Percocet: 4.
    He says that every time I try to tell him I'm having to deal with much too much pain.

    He says that despite the fact I've phoned HealthNet and asked and have gotten back to him with the info that HealthNet reps tell me "Your dr may order for you whatever amount of the medication you need."

    He says (still) that he can't raise my allowance any and if I keep asking him to help me with pain he will quote "have to put you" (me) "on the patch."

    Folks I've seen people who use the patch. I've talked with them. 6 out of 10...I dunno, maybe I just picked the wrong ten patch-users to talk with...tell me to not go there.

    Then I come here and find that other people swear by the patch while the former people swore AT it.

    As I keep telling lots of people to do, I researched. Read and read until my eyes crossed and I still don't know MY answer.
    I guess I won't know MY answer unless or until I accept a patch.

    Downside: I'm so sensitive to so many medications I'm more than half-afraid to even try the thing.

    I know no one can make the decision for me (with the possible exception of dr who thinks HE can), of course. I surely could use some advice, though.

    Does anyone know of a site where truth is told? I'm really not interested in looking at sites overflowing with bubbly "Oh this med is wonderful; I'm living, really living, again..." and there are pictures of people doing things I wouldn't have attempted before I headed down this pain road.
    I look at those things and think "Hey I was born AT night, not LAST night..." and it seems that the reason for most of the recommended treatments is to separate people from their $$$$.

    Not that an overabundance of $$$$ is one of my problems, far from it. I'm totally dependent on SSDI, MediCare, MedicAid, half-A** working painmasker, and my powerchair I've named "Harley Davidson."
    Hey we have to try to have a sens e of humor about some of the things that happen to us... that or go totally mad. Right? I think so.

    So. Bottom line, I need advice. Side note, changing drs is not an option. This boy I'm seeing now is the last in the too-short line of those who accept my insurance.

    Sorry this turned out to be so long.

    Thanks in advance for advice. I'll do my best to remember to get back here regularly to see if anyone has suggestions.

    [This Message was Edited on 11/16/2008]
  2. Janalynn

    Janalynn New Member

    Hi Lea,
    I can only give you my opinion. You have many more options in between 4 Percocets per day and the patch.
    Depending on your relationship with your doctor, which only you know - would determine how you talk to him about this. I might say I've been doing some research on pain medication because I'm so concerned about it...or something like that.

    First what dose of Percocet are you on? If you're on 7.5/500 - you could take 2 at a time, 4 times a day for instance. (4000 mgs of Tylenol is the max per day)

    There is also a med that I am on which is like Percocet, only no Tylenol. I am only 15 mgs. The actual name is Roxycodone (sp?) It's a variation of Oxycodone, just like Percocet.

    Another highly recommended thing I would try is a longer acting med like Oxycontin. VERY helpful and that comes in all different doses. You can use that and then use the Percocet for breakthrough pain.

    I am VERY surprised that your Dr. would suggest going from 4 Percs a day to the pain patch.
    Maybe he is not very educated in pain medication, which could very well be the case. My first doctor wasn't either. He prescribed me Vicodin, then Lortab (like Vicodin), never even mentioned the other options. I just remember him saying he had some patients who were in terrible pain that were on pain patches (he wasn't the prescribing physician). Every time I mentioned something to him though, he was wonderful and would pull out his little PDA and look something up.

    Main thing is your ability to communicate with your Doc and how open he is to looking into other options. You may have to just come right out and have the tough talk with him. ASK him about the other medications or tell him what you've learned. If you're reluctant to use the pain patch, make that clear to him, but that shouldn't mean, you're stuck where you are with 4 Percocets per day.

    You have to be an advocate for yourself. ME personally, wouldn't go to the patch until I absolutely had to. I mean once you're at that point, I don't know where else you go for pain relief.
    Someone else would have to answer that question.

    It's sort of ironic that he won't prescribe much - then hits you with the heavy duty stuff.

    Good Luck to you! Please keep me posted!
  3. doxygirl

    doxygirl New Member

    It is so true that each of us is different and what helps one may not work for another etc!

    I completly understand your reluctancy to go on the patch....and I would like to explain to you why i chose to use it myself ok? ( hopefully you say ok!tee hee)

    I started out about 5 years ago on vicodin....after about a year I was taking 1 1/2 at a time....and was getting little to no relief......

    but my dr would not prescribe anything I kept that up for about 3 years....finally I could not take it anymore so Idid research and found my pain managment specialist and he put me on oxycodone...and "WOW" WHAT A DIFFERENCE!!!!!!

    I got so much relief from the oxycodone...they were also 12 hour long acting so that too was a pain dr also changed my vicodin to norco which is basically vicodin but extra strength..and that was my breakthrough med.....

    I was stable and doing very well and was oh so happy!

    Then you might remember me about a year ago posting how my ins wrote me a letter saying they would not allow me to take the oxycodone anymore and it was because it was out of concern for me taking something that strong!

    Well thanks to all of the brilliant people here I found out the real reason they were discontinuing allowing the oxycodone is because the company that was manufacturing the generic form of oxycodone was sued by the brand name co....

    the brand name co won in court and the generic co could no longer manufacture the the generic...are you following me?

    If you are still with me here you will see the "REAL" reason my ins refused to let me have oxycodone is because there was no more generic and the brand name oxycodone was about $600 a month! It was a money issue and not because they were concerned for my health at all!

    anyhow this issue threw me for a loop and it was back to the drawing board for me and my pain dr....I was flaring because my pain control was stripped from me....

    my dr was trying anything and everything to help me find something else that my ins would cover and at the same time give me relief...

    it took me months of suffering and trying different meds.....and FINALLY for me it has come down to the fentanyl patch for my long acting pain med.....and norco for breakthrough pain....

    at first I was very groggy and I had to get a script for promethazine ( for nausea ) which worked very well.....but by the end of week one I was adjusting so well...and the relief I was getting was overwhelmingly terrific!

    "THEN" I had a major issue with my pharmacy and to make a long story a little shorter I ended up without a patch for two days....I was in bed and in so much pain and needless to say IN TEARS!!!!!!!!

    I did a little yelling and crying and after the second day I had my patches back and it took me a full TWO days to get stable again....but once I was I cannot tell you enough how well Iam doing!

    "FOR ME" the patch ahd been a god send......yeah it is strong but it has given me my life has brought me back as close as I believe I can come to being "normal" controls my pain so well...and Iam ecstatic!

    Now for sure I have to say over and over again THIS IS ME AND IT WORKS FOR ME! BUT...... I completly know that it may not work for you or someone else...

    But then again if it could do for you what it does for me isn't it worth a try?

    If you feel that you want something not as strong then by all means try something like percocet like my dear friend Janalynn says:)

    "yes" there are other things besides the patch.....but for me all I can say is that Iam GRATEFUL for the patch.....I feel so much better and I love the fact that Iam not taking something every 2 or 3 hours....I only take a patch once every two days and occasionally 1/2 of a norco for breakthrough!

    I fully support any decision you wish to try....and or commit to......because my dear Lea we are all different and we need to try different things until we find the things that work for us!

    Let me know if you have any other questions or if there is anything I can do to help you ok?:)

  4. momof27

    momof27 New Member


  5. Leaknits

    Leaknits New Member


    Yes, you have it precisely right. Dr says, boiled down, "patch is the next step." HN reps do say he may push the rx up.

    Sorry it didn't occur to me to go dig out the bottle for dosage info. Here ya go: 5-325. FIVE. Yes I knew the second number (325) is acetominophen.

    After the first time dr said that stuff about how if I had to have any higher relief I did wonder why, post-surgery and when I was going home, I'd been scripted eight of the 5-325s a day. Scratched that one up to "Well, the pain of the healing (sort of) leg was pretty bad; maybe that's what the rx-ing dr was thinking about."

    I didn't have much problem coming down to this dosage. Whew. Actually the rx was 5-325, three a day and I had to talk very much about OW to get it raised to 4 when, a non-remembered but long stretch of time later, I felt the dosage just had to be raised some.

    I will go to the site you mentioned, thank you!, and print out the chart. You're right, I probably shouldn't print the part about patients becoming tolerant to dosage...dr is already making noises about "This stuff is really hard to get off of."
    As if I'd want to "get off of" it when aside from the surgical supposed fix-up not much has been done and there aren't any plans being offered TO do something.

    Yes, I can call HealthNet again and say what you wrote here. Maybe HN will e-mail me something to give to dr?

    It wouldn't surprise me a bit if some PatchRep was pushing dr to order patches instead of Percs. All those pens, post-it pads, calendars, wall clocks, weight scales, small medical devices etc in his office (but he doesn't get kickbacks, oh no) kind of make me wonder since they're all neon-brilliantly emblazoned with the name of some drug or other.

    Yes you did help. I haven't asked yet for a raise from 4 a day but the time when I might have to is coming close, I think. My gosh what does a person who's in pain have to do, crawl into the office and cry & moan?
    I totally understand there are people who mis-use opioids; had a neighbor once who claimed that Vicodin made him "high," and THAT is something I don't understand. How in the world does a person get "high" from a downer?? Oh. The Everybody's Different thing, huh?

    Thanks again!

    [This Message was Edited on 11/18/2008]
  6. Leaknits

    Leaknits New Member


    First off, you bet I said "okay," I came here asking for input and your reasons for using the patch qualify. lol.

    Hmm. Your dr who scripted Oxycodone also ordered a break-through med? My guy hasn't (and, I think, wouldn't) ordered anything for break-through. And boy do I get break-throughs. OW! Make that OW-cry.

    Hmm again...aha so that's why I haven't seen generic fo r Oxycodone anywhere lately. All about the big bucks. Imagine how surprised I'm not.

    Tossed in an EDIT here:

    I just looked again at the Percocet bottle. Right there in black on white are the words "Oxycodone...generic for Percocet."
    Hmmm again.
    End of EDIT.

    The 'groggy and nauseous' you mention are two of the reasons I'm holding back from accepting the patch; dr has given me Phenergan for nauseous-from-meds but it didn't help all that much.
    You may have read a post I wrote about talking to people who had the patch slapped onto a bare arm; I guess I figured if they were going to advertise that they were using the patch I could ask them about it. Nervy, that's me.

    As I already said maybe I just talked to the wrong people but those poor things could barely focus their eyes, much less their words. YOU don't sound anything like them. (I read about your issue with the pharmacy. They ought to be at least slapped on the hand OR upside the head for lying to you & leaving you in pain for 2 days).

    At this point, Doxy, I think it'd maybe be best to start small, with just a bump in the number of Percs.
    To try and not make a long post even longer, what I think is needed is a hip replacement but (long story) MediCare won't approve such for another 5 to 10 years because according to its' criteria I'm not old enough. HUH? What in the world does age have to do with anything, when stacked beside need? I dunno.

    Thanks for answering and understanding we're all different.


    [This Message was Edited on 11/16/2008]
  7. Leaknits

    Leaknits New Member


    Holy crow, momof27, I'm IN California and never heard of this bill!

    I did see a post a couple days back about pain patient rights but didn't read the whole thing; it was pretty long and my bashed bod just wanted to go to bed. Sorry.

    SB402, huh? I do believe I'll trot over to gov't site and print out a copy for dr. Hopefully he will at least glance at it instead of his usual dump into trash.


  8. Leaknits

    Leaknits New Member


    Oh, thank you for saying nobody wants to smack me! lol.

    And after reading your post I wonder, too, where one would go if the patch stopped working for them. :- /.

    EDIT: Grammy, you asked if I have someone to go to appts with me. No, I don't have anyone to do that. End EDIT.

    [This Message was Edited on 11/16/2008]
  9. Leaknits

    Leaknits New Member


    The "surely can't imagine it's because percocet is cheap and the patches aren't" sarcasm wasn't missed.
    I happen to like sarcasm,:)!

    I will print out dosage chart and the SB402 for dear dr. (That 'dear,' that was sarcasm, too). My printer's going to get a workout because I'll also be toting along the post about Patient Rights.
    Poor dear dr will probably faint when he sees the stack of pages...

    Before the pharmacy I use was sold I did ask a pharmacist there about a recommendation of a different dr. Got back "well there are always the county clinics..."

    I started seeing this guy and quit the clinics because of their Pain Patient Protocol, a little beauty that tried to regulate everything up to but not including how many times we breathe in a day.
    Posted a rant-opinion somewhere here in this board that I felt prisoners of war were treated better than The Rules in that clinic contract pain patients were forced to sign or get no help with pain.

    Being told that I absolutely could not use any pharmacy other than the one I do use because they deliver was a bit much, IMO.
    That was just one of the rules. Some of the others were worse, much worse.

    I've no idea why the county clinics came up with that Protocol. They're all backed by a certain religion but I don't really know if the Religious aspect had anything to do with the protocol. It was just there and we had to take it or leave it.

    Gee, and here all that time I thought I was grown up and could, if I wanted to, use a pharmacy that might be closer to where I live without fear of being bounced out of the pain patient program with no help at all. Silly me.

    Hug, Grammy.


  10. Leaknits

    Leaknits New Member


    Well, sorry for the 2-parter and possible confusion.

    I said in a post with this same subject (first answer but not numbered) that on the bottle of Percocet is written Percocet, generic for Oxycodone.

    I got the two names in reverse from what they should be. Tried to Edit and I don't think it worked right. At least, the EDIT doesn't show up here the way I tried to correct it to read.

    No, I don't have brainfade or anything. Sure.

    I think I better get out of here now and go do something easy like watch paint dry. The mind is melted!

    Sorry for the mistake.

  11. Leaknits

    Leaknits New Member


    Went to look up SB 402 and it seems to have a lot to do with wages.

    I'm wondering if you meant to write SB 420, which I think is a very good bill; it looks to be a re-try of Proposition 215 which years ago passed with flying colors only to have Feds/DEA/Big Govt,/SOMEthing step in and decree "No Way."
    If you are talking about the 420 Bill I feel it would be a very good idea if it were approved.

  12. PVLady

    PVLady New Member

    Even if you get tons of feedback from others many people react differently to medications, so you still can't be certain about anything. I took MS Contin and it nearly put me under. Others take it and love it. None of these drugs are without serious side effects. If anyone tells you there are no side effects don't believe it.

    My mom was on the patch and she did tell me it really helped her pain. She had excrutiating pain from degenerative disc disease. It was so bad sometimes she would be just shaking her leg. Before we got her to a good pain specialist I used to take her to the ER for pain shots.

    I truly believe pain is so under-treated in this country - plus we don't have many doctors who really understand treating pain. I finally found a excellent pain specialist in Redondo Beach, CA. I don't know if you are in California, but you can check with Dr. Rick Chavez on Prospect Avenue, Redondo Beach, CA.

    He only treats pain and is not one of those doctors who just give spinal injections. He is a internist plus specializing only in pain treatments. He is the director of the pain management at Little Company of Mary Hospital in Torrance, CA.

    If you are very sensitive to medications I don't blame you for the reluctance to just jump in and try the patch. I will tell you, there is also a patch called Lidoderm which is not a powerful at Fentanyl. My mom was on the Lidoderm, probably because she was older and most older people are more sensitive. Interestingly, once when she was in the hospital, they accidentally gave her the Fentanyl instead of Lidoderm and she was incoherent for two weeks.

    I am not trying to scare you or discourage you from using the patch but you might try the Lidoderm first. My mom did feel it helped more that anything.

    One thing I noticed about the pain specialist was he used smaller doses of a variety of pain meds rather than just one type. He would see my mom every month and if something was not working he changed it. It is so important to find a doctor who has the patience to work with you because it is all "trial and error" to find what works. At one time he had her on Lortab, Soma, Darvocette for breakthrough pain, low dose cortisone,

    The most important thing is giving you back a quality of life. With a knowledgable doctor it can happen. Sadly, so many doctors don't seem to care, or don't have the knowledge about pain treatment. My doctor told me they get very little training in medical school on treating pain.

    As you probably see here, many doctors will prescribe opiates. Then when the patient becomes tolerant and needs a higher dosage they try to cut them off completely - cold.

    You can also speak with some pharmacists (several) and discuss the side effects. Ask them the difference between Lidoderm and Fentanyl. I really believe Lidoderm is not as strong. Also ask the pharmacists what they would recommend to control your type of pain. I think doctors consult with pharmacists all the time, why not you?

    As respects to the power chair, I thought I saw in their advertisements that if you insurance did not approve you, they would give you the chair. Have you called them? The ads they run here in California says if you are on Medicare and they turn you down on the chair, you can keep it free.

    I hope you find good help soon...

  13. Janalynn

    Janalynn New Member

    You're on 5/325?? Oh my, as far as the Tylenol dose in that, you could have 12 a day. You need two, 3 - 4 times a day. Or bump you to the 10 mgs.
    Also - dont' forget about the longer lasting pain meds. They really helped me greatly. Then when the pain gets bad, you take the other for breakthrough pain.

    I too, have nothing at all against the patches!! At all. Heck, I could be headed in that direction. It's just that you are on a very low dose (the lowest) or Percocet there is.

    BTW- last time my husband picked up my Oxycontin the pharmacist said "I think we have that in generic" (could be a mistake Doxy)
    As I mentioned (I think LOL) I was scared to take Oxycontin because of what I'd heard about it - but even the low dose didn't help me, we had to up that. I'm glad I listened to my doctor and agreed to take it.

    You just need to decide what you want. If you go to the patch, it's unlikely that less potent pain meds will work for you in the future. (unless your pain changes).

  14. doxygirl

    doxygirl New Member

    PV is right...the lidoderm patch is a patch that actually numbs the area you place it on, it does not have narcotic pain medication in it at all, and it really helps a lot with pain that is localized to a certain area....for example if your shoulder has burning stabbing pains in it.....the lidoderm patch most likely will help eliminate some of the pain by numbing the area!

    The fentanyl duragesic patch, is one that actually disburses narcotic pain medication right into your body it last 2 to 3 days and then you change it! it actually places the medication into your blood stream via the the difference from the fentanyl patch and taking an oral medication is that with the patch it bypasses gaining entry into your system via the tummy! and goes instead through the skin and into your blood!

    I have used both but of course my ins will not cover the lidoderm patch....and they did help me a lot.....I just cannot afford to pay cash for all of these medications that my ins refuses to!

    anyhow I just wanted to let you know that I have used both of these patches and what my experience was!

    I hope this helps you my dear :)

  15. Leaknits

    Leaknits New Member


    To start at the bottom of your post I seem to have misled you about the chair. I already have one. It cost the US taxpayers $7,200 because MedicAid wouldn't replace a set of batteries, cost $321, in my former and better chair but that's another subject. I "talk" a lot about that subect in my post on this site (OT: Can't walk well? DO NOT call ScooterStore! 11-13-08) in case anyone's interested in the ScooterStore experience.

    You're too right about how drs here don't understand much about how to treat pain. Go to one, say you have pain issues, and dr immediately gives the fish-eyed stare over his/her glasses as if to say "Right, here's another drug seeker in my office claiming to be in pain so I'll script opiates."

    Well, bleeeeep, if opiates are what a patient needs and does not abuse them what in the world is the problem with drs??

    A person whose username I've brainfaded already (Sorry!) poster put up a link for a site that explains all about Oxycodone, the generic for Percocet; I went there and printed out info to take to dr. It just happens I have an appt with him tomorrow...

    At the most recent appt I told dr I was having worse pain; just wanted to get it into my record but I doubt he added anything to my file having to do with what I said. What he did do was say "And are you elevating your feet when you are in that thing?"
    "That thing" is my powerchair which helps me get from place to place out in the world and our local bus co has a way to transport Chair People.

    I guess he doesn't understand there is no way to keep ones' feet elevated without support while sitting in "that thing."

    This guy is certainly one I wish had to exerience our lives for oh, say, a couple months...and then run into a dr such as he is.

    PVLady, I'll certainly talk with pharmacists and such as you suggest IF it's decided that the patch whether Lidoderm or Fentanyl is the way I must go...after checking out the (I didn't know there were so many!, hanging my head in shame) options between where I am now medicinally and The Patch.

    Unfortunately your Dr Chavez is way too far away from where I live in Lake County, Northern CA. RATS!! It seems that's almost always the case; I hear about a Good Dr and it turns out the person is an unreachable number of miles from me.

    CALLING DRS: We need good drs here in Lake County, too. :- / .

    Thank you for weighing in with your kind words.

  16. Leaknits

    Leaknits New Member


    Just a note...I got in touch with HealthNet Orange to inquire about coverage of the Lidoderm patch. That's just in case I ever have to "go there."
    Yes I could have looked in HNO's Formulary, if the stink of the paper or whatever is used to print info on the pages didn't cause a MCS flare...and you bet I explained that in the note.
    Maybe someday drs and insurance companies and other Authority Figures will pay a little attention to details of our lives with this d'd...maybe.

    Thank you, Doxy, for the clear explanation of the patches and your experiences with them.


    [This Message was Edited on 11/18/2008]