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    #31
    Alan, I'm so sorry to hear this! Is it because of intolerance to the meds? From your profile, you've been dealing with this a long time. I don't know how you do it!

    Wishing you peace, Alan!

    T

    Originally posted by alan View Post
    I've never found any relief. I just get worse. I hope you find some.
    Incomplete, SCI, T1-T8, w/ Arachnoid Cyst. Bilateral shoulder surgeries, 2 on the left, 3 on the right, right forearm surgery for a crushed radial nerve.

    "We can always choose to perceive things differently. We can focus on what's wrong in our life, or we can focus on what's right."
    — Marianne Williamson

    Comment


      #32
      OxyContin (long acting, no tylenol in it) has been a total godsend for Chad. He started it about 6 years ago and it made a massive improvement in his quality of life. Best decision pain-wise he ever made. It took me a long, long time to convince him though for fear of being seen as a "drug addict" or "being hooked on drugs".

      ETA: he takes 20 mg in the AM, and 40 mg at night. He has taken that dose since the start, never once has needed to escalate the dose.
      Wife of Chad (C4/5 since 1988), mom of a great teenager

      Comment


        #33
        Sorry about your shoulder but glad you're able to keep it healthy! Great that you swim too! I had the same procedure, my first shoulder surgery in the 80's, after a dislocation. It was a much easier recovery than the ones that followed! More recently, my right shoulder was held together with screws, for a while ...the MVA that caused my SCI, mangled that surgery - I was only 3 weeks post-op!

        I also try to keep my meds at the lowest possible dose, more or less PRN. I guess I'll never trust the Dr.'s to be consistent, and after our community flooded in 2010, with no way in or out for days, I like to have extra PM's just in case of an ER.

        Thanks again, Avictoria!

        T


        Originally posted by avictoria View Post
        Hey Tina

        My shoulder injury and surgery was post-SCI. Surgery (acromioplasty) was 7 years ago. It took months to heal and the bone pain was awful. I still have flare-ups of pain but have found that doing a lot of swimming and range-of-motion really protects the joint and prevents strain and pain. I take 2.5-5 mg oxycodone when the pain is particularly bad and that works well. I try and take it intermittently and at very low doses to prevent any physical dependence and keep the side effects to a minimum. The swimming really helps a lot. Hope this info is useful!!
        Incomplete, SCI, T1-T8, w/ Arachnoid Cyst. Bilateral shoulder surgeries, 2 on the left, 3 on the right, right forearm surgery for a crushed radial nerve.

        "We can always choose to perceive things differently. We can focus on what's wrong in our life, or we can focus on what's right."
        — Marianne Williamson

        Comment


          #34
          Wow, 6 years and no changes ....that's wonderful! AND, what I hope for soon. I'm so tired of dealing with the meds, I sometimes wonder if I could butch through the pain and tell the Dr.'s to kiss my ...butt!

          I remembered tonight, while reading these post, I have a conditions nurse and pharmacist at my disposal 24/7. I'm going to give them a call and see what they add. From what I read, the Oxy stuff sounds like the lesser of the evils, but like your son, I hate the stigma that goes with these meds. What a world, what a world... LOL!

          Hope you and Chad are doing well! BTW, I've read several of your post, Chad has a great Mom!

          Thanks for the info!
          T


          QUOTE=zillazangel;1539910]OxyContin (long acting, no tylenol in it) has been a total godsend for Chad. He started it about 6 years ago and it made a massive improvement in his quality of life. Best decision pain-wise he ever made. It took me a long, long time to convince him though for fear of being seen as a "drug addict" or "being hooked on drugs".

          ETA: he takes 20 mg in the AM, and 40 mg at night. He has taken that dose since the start, never once has needed to escalate the dose.[/QUOTE]
          Incomplete, SCI, T1-T8, w/ Arachnoid Cyst. Bilateral shoulder surgeries, 2 on the left, 3 on the right, right forearm surgery for a crushed radial nerve.

          "We can always choose to perceive things differently. We can focus on what's wrong in our life, or we can focus on what's right."
          — Marianne Williamson

          Comment


            #35
            Husband actually. My sig file is a bit misleading now that I look at it! (ETA: I changed it to be more clear! )

            I should also mention that he has a supply of 5/325 Percocet for break through pain, but he uses that rarely, maybe a few per month.
            Wife of Chad (C4/5 since 1988), mom of a great teenager

            Comment


              #36
              Well, I typed husband first, but second guessed and changed to son! In any case, Chad has a great wife and your son a great mother! Your new sig says it all!




              Originally posted by zillazangel View Post
              Husband actually. My sig file is a bit misleading now that I look at it! (ETA: I changed it to be more clear! )

              I should also mention that he has a supply of 5/325 Percocet for break through pain, but he uses that rarely, maybe a few per month.
              Incomplete, SCI, T1-T8, w/ Arachnoid Cyst. Bilateral shoulder surgeries, 2 on the left, 3 on the right, right forearm surgery for a crushed radial nerve.

              "We can always choose to perceive things differently. We can focus on what's wrong in our life, or we can focus on what's right."
              — Marianne Williamson

              Comment


                #37
                Charlotte, I also had great success with Oxycontin -- I took 80mg twice a day. But I just couldn't afford to keep shelling out $900+/month for it when I was in the Medicare Part D "donut hole" and had to pay the full price.

                So after avoiding it for years because of the stigma that comes with taking it, last year I switched over to methadone (40mg three times a day). I wish I'd done it years ago. It gives me much better relief, and at a pre-Part D cost of under $40/month, I'd still have the $35k I paid for the Oxycontin before I was eligible for Medicare and during a couple years of Part D donut holes.
                Last edited by thehipcrip; 7 Jun 2012, 11:35 PM. Reason: fix a good sentence that had gone bad
                It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                ~Julius Caesar

                Comment


                  #38
                  Personally I get better relief from Oxy than Methadone. I think all of our bodies react differently. Obviously, cost is a very real factor for all of us with the current state of our countries health care in the USA.
                  Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                  Comment


                    #39
                    Hip, $900.00 a month?!? Jeez, that alone would put you in pain! I'm so grateful that I have good private ins. Knocking on wood as I type this...LOL! That's great that you found something that works for less $$$$!

                    Rob, I can't believe what some of the members here go through to get the meds and equipment they need. It makes me sick to tears!

                    Well, I spent an hour on the phone getting advise from the ins. Pharmacist and my local pharmacist. Most of that time on hold and getting disconnected once. The ins. Pharmacist recommended Fentanyl patches, saying they work for 3 days and are non-opioid.

                    My local Pharmacist says, with my low tolerance, Oxycontin is the closest to Hydrocodone and the best choice. Since I tolerated Hydrocodone, he thinks the swelling from Tylox was not caused from the Oxy, but another ingredient in the Tylox, or the Anesthesia post-op shoulder surgery. He also said, the Fentanyl patches would probably just make me sedated and do little for my pain.

                    However, he said, they do not carry any long acting PM's at any of the stores within the city because they've been robbed and I may have a difficult time finding at any Pharmacy!

                    Seriously?!? Are any of you dealing with this issue? You know, we've had a few bank roderies in the city too, I wonder if they're going to quit stocking money?!?

                    T
                    Incomplete, SCI, T1-T8, w/ Arachnoid Cyst. Bilateral shoulder surgeries, 2 on the left, 3 on the right, right forearm surgery for a crushed radial nerve.

                    "We can always choose to perceive things differently. We can focus on what's wrong in our life, or we can focus on what's right."
                    — Marianne Williamson

                    Comment


                      #40
                      fentanyl is an opiod narcotic. It's like all the others and depends on the individual. My best friend had the best pain control with buccal fentora but her insurance decided to only cover it for cancer patients and she switched to opana.

                      I'd love to try fentanyl because it would be a dream come true to switch from so many oral pills a day to a patch every 3 days. But my pain is finally under control so I'm fine staying where I am!

                      I've only found one walgreens that carries my meds, it's in the center of the city by the university hospital so I go there every month. I try to time it with my hospital appts. I have given up calling the local ones constantly. You probably already know this, but never accept for them to fill a partial script. With narcotics if they don't fill the whole script you can't get the rest and need a new script for more. Not like other meds where you can go back for the rest if they were short. So never take them up on the offer if they say 'we only have x many of that medication, is that ok?' Only do so if it's an emergency and you need the pills right away; and I'd call your dr immediately after about getting the script for what was left.
                      Last edited by ~Lin; 8 Jun 2012, 1:01 PM.
                      Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

                      I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

                      Comment


                        #41
                        Fentanyl is an opiod. It is one of the fastest acting ones.

                        I'm not sure that I would trust a pharmacist on the phone to give you the most accurate advice. But we know that can be a challenge with doctors as well.

                        Comment


                          #42
                          A key question is what dosage of hydrocodone worked best for you? Opana and fentanyl are much more potent than hydrocodone. Extended-release formulations of oxycodone and morphine are often in much higher doses. If you were getting good pain relief with one-half or one 10 mg hydrocodone tablet every 6 hours and you switch to fentanyl or oxycontin you might end up WAY over-sedated. Calculate how many mg of hydrocodone you are taking per day and tell the doctor and pharmacist. You can find opiate equivalency charts on-line to double check.


                          It's scary that someone told you fentanyl is not an opiate. It's a VERY potent opiate. There are several important safety considerations with patches. 1) If you get overheated they release more opiate into your system. Elderly people using heating pads and fentanyl patches have accidentally died from OD. 2) Fentanyl and other opiates can react with other drugs and food. Grapefruit juice can cause more fentanyl to build up in your sytem. 3) If you have kids or dogs, frankly I wouldn't use a fentanyl patch. Too many cases of kids, grandkids and pets finding a dropped one or leftover patch and chewing on it and accidentally overdosing.


                          In pain management, they're supposed to start you at the equivalent dose of what you are currently taking, then slowly increase if your pain isn't managed. So if you are used to 30-40 mg of hydrocodone per day, they should try something like 10 mg Oxycontin (extended-release oxycodone) 2 or 3 times a day. I think a lot of the folks here are on higher levels of opiate per day than you are. It would be very dangerous for you to jump from a relatively low dose of hydrocodone to high-dose Oxycontin, or fentanyl or whatever. Pain management is a Godsend to those in pain but you really need to educate yourself as a patient and consumer. This is a really good link. There are very good web MD articles and the important patient info for all these medicines is readily available on-line. P.S. Generic Oxycontin is available. I don't know how expensive it is; I only took it a few months after surgery years ago. It made me incredibly depressed. If the doc is worried about the tylenol in hydrocodone, and you got good relief from 40 mg per day, why don't they just try you on plain old oxycodone at 20-30 mg per day (~6 5 mg tablets per day taken every 4-6 hours)? It'd be the simplest way, least expensive and the short-acting oxycodone tablets aren't as attractive to abusers as are the extended-release opiates.

                          http://www.drugs.com/cg/pain-management-and-opioids.html

                          Comment


                            #43
                            Lin, thank you. I knew the insurance provided pharmacist was incorrect when I looked up Fentanyl. Exactly the reason I'm so nervous about changing and wanted to get some advise here also. I trust my Dr., but admit, with the new state law, he's been a little nervous and confused with the meds my last couple of appointments.

                            I don't know about the availability issue. My insurance claims I can mail order these meds - hmmm, I didn't think that the gov allowed that. LOL, I can't imagine calling all over town asking, what long acting pain meds do you carry?! One more issue to confuse my doc. I'm happy for you that yours is available and convenient!

                            My Walgreen's was robbed early this morning of 100 Xanax. Guess they won't be stocking that anymore! Do we live in crazy times, or is it just me?!? LOL

                            I don't blame you for not branching out with your meds ...if it ain't broke, don't fix it!


                            T



                            Originally posted by ~Lin View Post
                            fentanyl is an opiod narcotic. It's like all the others and depends on the individual. My best friend had the best pain control with buccal fentora but her insurance decided to only cover it for cancer patients and she switched to opana.

                            I'd love to try fentanyl because it would be a dream come true to switch from so many oral pills a day to a patch every 3 days. But my pain is finally under control so I'm fine staying where I am!

                            I've only found one walgreens that carries my meds, it's in the center of the city by the university hospital so I go there every month. I try to time it with my hospital appts. I have given up calling the local ones constantly. You probably already know this, but never accept for them to fill a partial script. With narcotics if they don't fill the whole script you can't get the rest and need a new script for more. Not like other meds where you can go back for the rest if they were short. So never take them up on the offer if they say 'we only have x many of that medication, is that ok?' Only do so if it's an emergency and you need the pills right away; and I'd call your dr immediately after about getting the script for what was left.
                            Incomplete, SCI, T1-T8, w/ Arachnoid Cyst. Bilateral shoulder surgeries, 2 on the left, 3 on the right, right forearm surgery for a crushed radial nerve.

                            "We can always choose to perceive things differently. We can focus on what's wrong in our life, or we can focus on what's right."
                            — Marianne Williamson

                            Comment


                              #44
                              Nope, I won't be using that ins. service again!

                              I've had my share of Dr. challenges too!

                              Thanks, HLH!

                              T

                              Originally posted by hlh View Post
                              Fentanyl is an opiod. It is one of the fastest acting ones.

                              I'm not sure that I would trust a pharmacist on the phone to give you the most accurate advice. But we know that can be a challenge with doctors as well.
                              Incomplete, SCI, T1-T8, w/ Arachnoid Cyst. Bilateral shoulder surgeries, 2 on the left, 3 on the right, right forearm surgery for a crushed radial nerve.

                              "We can always choose to perceive things differently. We can focus on what's wrong in our life, or we can focus on what's right."
                              — Marianne Williamson

                              Comment


                                #45
                                Thank you so much for this information, Avic!

                                I'm going to take a look at the chart you linked tomorrow. I want to reread this then, and ask some questions when I'm not so tired. You've addressed many of my questions AND concerns in this post.

                                Thank you again!
                                T



                                Originally posted by avictoria View Post
                                A key question is what dosage of hydrocodone worked best for you? Opana and fentanyl are much more potent than hydrocodone. Extended-release formulations of oxycodone and morphine are often in much higher doses. If you were getting good pain relief with one-half or one 10 mg hydrocodone tablet every 6 hours and you switch to fentanyl or oxycontin you might end up WAY over-sedated. Calculate how many mg of hydrocodone you are taking per day and tell the doctor and pharmacist. You can find opiate equivalency charts on-line to double check.


                                It's scary that someone told you fentanyl is not an opiate. It's a VERY potent opiate. There are several important safety considerations with patches. 1) If you get overheated they release more opiate into your system. Elderly people using heating pads and fentanyl patches have accidentally died from OD. 2) Fentanyl and other opiates can react with other drugs and food. Grapefruit juice can cause more fentanyl to build up in your sytem. 3) If you have kids or dogs, frankly I wouldn't use a fentanyl patch. Too many cases of kids, grandkids and pets finding a dropped one or leftover patch and chewing on it and accidentally overdosing.


                                In pain management, they're supposed to start you at the equivalent dose of what you are currently taking, then slowly increase if your pain isn't managed. So if you are used to 30-40 mg of hydrocodone per day, they should try something like 10 mg Oxycontin (extended-release oxycodone) 2 or 3 times a day. I think a lot of the folks here are on higher levels of opiate per day than you are. It would be very dangerous for you to jump from a relatively low dose of hydrocodone to high-dose Oxycontin, or fentanyl or whatever. Pain management is a Godsend to those in pain but you really need to educate yourself as a patient and consumer. This is a really good link. There are very good web MD articles and the important patient info for all these medicines is readily available on-line. P.S. Generic Oxycontin is available. I don't know how expensive it is; I only took it a few months after surgery years ago. It made me incredibly depressed. If the doc is worried about the tylenol in hydrocodone, and you got good relief from 40 mg per day, why don't they just try you on plain old oxycodone at 20-30 mg per day (~6 5 mg tablets per day taken every 4-6 hours)? It'd be the simplest way, least expensive and the short-acting oxycodone tablets aren't as attractive to abusers as are the extended-release opiates.

                                http://www.drugs.com/cg/pain-management-and-opioids.html
                                Incomplete, SCI, T1-T8, w/ Arachnoid Cyst. Bilateral shoulder surgeries, 2 on the left, 3 on the right, right forearm surgery for a crushed radial nerve.

                                "We can always choose to perceive things differently. We can focus on what's wrong in our life, or we can focus on what's right."
                                — Marianne Williamson

                                Comment

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