Fentanyl for Pain

    • Anonymous
      September 11, 2011 at 3:37 pm

      Neurologist would like to keep me out of the hospital for a few more weeks if its possible. I can’t have another treatment yet, it’s still a little too soon. The pain is one of my biggest issues. I have been taking Percocet 7.5/500 every 4 hours and they barely make me comfortable for an hour, if at all. So, he’s added the Fentanyl 25mcg patch to change every 72 hours and the Percocet is now 5/325 every 12 hours (only if needed).

      I am also on 80mg Prednisone/day and 900mg Neurontin/day. He would like me to be on a higher dose of Neurontin but I am on the maximum dose for my weight so that’s a plan for a later time.

      I am new to the pain patch. I’ve never had one. I did read the instructions and the handout that came with them. I read all the side effects and warning signs and have already stored in my phone an alarm to tell me when to change patches.

      There are SO MANY warnings and scares with this medication … is there anything I should or shouldn’t do other than what the warnings say? I’m just a little nervous, this is a little new for me. I could just paranoid because I’ve never had one but any experiences or tips for this medication, I would appreciate very much.

    • Anonymous
      September 11, 2011 at 5:51 pm


      I have forgotten what treatments you are getting and why you need to go the hospital. As a reminder, let’s consider both of the main treatments: IVIg and plasmapheresis. The Peripheral Nerve Society calls for treatment with IVIg initially at 2 g IVIg per kg of body weight, followed by 1 g/kg every three weeks until there is clinical improvement or three months. However, many people find that they need treatment more often, sometimes even once a week. Plasmapheresis is usually given as an initial round of five treatments. What the interval to the next round should be and how many treatments are needed in each round is open to debate. However, it is not uncommon to need another round of plasmapheresis two weeks after the end of the last round. The point here is that you can receive either treatment often if needed. Also, these treatments can be given on an outpatient basis. Unless you are immobile—you cannot move even with a wheelchair—there is no obvious reason why you must be admitted to the hospital for treatment.

      I can see only four reasons to wait for another treatment if you are declining. First, you are still recovering from bad side effects. Two, the side effects were terrible and you cannot bear the consequences yet. Three, you are actively trying to see how long you can go between treatments. Four, you cannot afford the treatment right now. If none of those applies and you are not improving, then you should ask your neurologist to move your treatment up again.

      Unless you are absolutely tiny, like 50 pounds, 900 mg of Neurontin is nowhere near the maximum dose. I know of people who have been on 5600 mg/day, and many people don’t find adequate relief until they have much higher doses than what you are getting.

      Neurontin is an odd drug in that its effectiveness drops off at higher doses. A 2400 mg dose does not put twice as much into system compared to a 1200 mg dose. So if 600 mg really did not do the job, and 900 mg barely does, the next jump might not be to 1200 mg, but perhaps to 1500 mg or 1800 mg. Neurontin is also not metabolized by the body, just used, so its safety is reasonably good, even at high doses.

      Godspeed in your treatments,

    • Anonymous
      September 11, 2011 at 9:19 pm

      To make a long story short (my full story is on another thread), I had gastric bypass surgery May 2010, pregnant, September 2010, my entire pregnancy was very complicated and I was on bed rest, December of 2010, delivered baby naturally, 1 day later, DNC, January 2011, I started developing symptoms of CIDP. I ignored the symptoms – I should have gone to the doctor before but I didn’t go until July. And between July and August I got so bad that I was admitted to the hospital because I had no feeling or movement in my legs or feet.

      My first IVIG treatments, I had for 4 days.. 5 days? I left the hospital after 9 days being able to feel my legs, move them, and take very small baby steps, with assistance. I was making progress for 5 days until I lost feeling and movement and was admitted again for more IVIG.

      At this point, I am making no progress but I am not getting worse. I am 99% wheel chair, I am too weak to use the walker, I have tremors on and off all day long, the burning sensations is back. The pain never goes away … you know the story.

      I am not having any side effects from the Prednisone so he wants to try to give it a chance to work. He said that I am too weak to be in the hospital if he can prevent it for a couple more weeks, that’s what he’s trying to do. He doesn’t want me in there with other germs if he can keep me comfortable at home.

      He said that I need to be patient, he may not be able to give me any kind of prognosis for a couple months. He is a great doctor, he uses his resources and is very open in his communication. Although he is a neurologist, his main specialty is brain. While they were running tests and doing everything to diagnosis me, he referred to his books, worked with 2 hospitalists, and a neurologist at UC Denver. He is referring me to the neuro at UCH Denver because he specializes in nerve and muscle. Apparently my neuro doesn’t have the technology here? (I may be confused with that last one).

      Bare with me here, I my thinking is starting to go downhill. I understand what you are saying about the effectiveness of Neurontin. I may speak with him about this because I could be confused here. I weigh 125 lbs.

    • Anonymous
      September 11, 2011 at 10:06 pm

      I’ve had my Fentanyl Patch for 10 years. I keep a calendar marked every 3 days so when know to change patch. It has very little its side effects for me. Don’t take hot baths/showers wearing it, keep out of the sun/extreme heat and try to protect the patch with a sleeve/top. I keep paper tape on hand in case it needs to be secured more (edges can come up). If I can find an old PM I wrote someone else about it I will PM it to you.

      Sounds like the IVIG did wonders for you. It doesn’t make sense for you to have to wait for another infusion?? Infusions can be done at a private clinic or at home.

    • Anonymous
      September 11, 2011 at 10:38 pm

      It worked for about a week before I needed another one. Then I had one a day for 3 days my last hospital stay. It seemed to work a few days and I’m kind of just stuck. I think the reason why I’m waiting is because he wants to give the prednisone a chance to work. I think. I am going to ask him this at my next appointment.

      I am not having too many side effects with it. I am still trying to figure out how it works. I’m kind of amazed by it. I definately felt it after I put it on. I have had less pain today than I’ve had in a long time but I’m starting to hurt like I normally do now. Is it okay to get the patch wet while in the shower/bath or should I cover it?

    • Anonymous
      September 12, 2011 at 12:39 am

      I wear my patch 3 days on one upper arm and then use the other. This way I alternate areas wearing the patch. I never had skin irritations using the patch. I shower with mine. If you take a bath I wouldn’t think you should it submerge in the water (?). Softly towel area off. Follow the careful deposing of each patch and when handling it wash your hands thoroughly with soap. If the pain is still a problem you may need a stronger patch and/or break thru meds. I use the 100mc patch and have Vicodin for break thru pain. I’ll be glad to answer any other questions here or you can PM if you want.

      Make sure your neurologist and you are on the same page treatment wise. Best of luck.

    • Anonymous
      September 12, 2011 at 5:24 am

      I’ve also been on Percocet 7.5/325 for over a year and they do NOTHING for me except back me up! 🙁 I am also on 50mgs of steroids. Your story sounds very similar to mine. I’m getting ready for a double dose of treatment on IvIg and IV steroids to help KICK it in for me.

      I am however walking. Not great, need a walker, REALLY need a wheelchair, but I’m stubborn and refuse. I hobble, hang on to stuff, fall, takes 10 mins just to stand, you know the drill.

      Like you, I have two very small kids and it’s just hard to cope this way. My pain is also something TERRIBLE and the perc’s just don’t CUT IT. I get about 50 Charlies horse type cramps a day and when my muscle’s aren’t seizing up, the just refuse to work and move. I also have tremors and my hands shake. Sucks because I’m am artist and need my hands.

      I just could not help seeing me when I read your post. I’m feel terrible we are all going through this. Hang in there, keep fighting and thanks for the info on the patch for pain. I can’t take the meds he’s been giving me because they knock me out! The perc’s don’t make me sleep, but like you, work for about an hour, maybe! Clock watching is so hard when you hurt!

      When is your next treatment? I go back this week….YIPPIE! I feel SO much better after treatments, but it’s short lived, like a couple weeks. This will be IvIg round number 3!

    • Anonymous
      September 23, 2011 at 6:27 pm

      I do not know when my next IVIG treatment will be. I had an appt with my neuro today and he wants to refrain as long as possible from doing another treatment since he’s sending me to University of Colorado Hospital in Denver. He wants to keep me stable at home if possible since he doesn’t know what they are going to do. They have more technology there and he said they may want to do more than IVIG. He lowered the Prednisone from 80mg to 60mg. I am having side effects from them that’s becoming uncomfortable.

      The Percs don’t work and OH GEEZ, do they back me up! I am on a stool softener 3x a day and 1 suppository once a day. If I don’t take the suppository, I don’t go and when I do take it, there’s no guarantee. I’ve been severely constipated for several months. Now, I am experiencing problems urinating. I feel like I am struggling to push (like I’m having a bowel movement) but I’m only trying to pee. Usually, I can go, but my bladder never feels empty. I have mentioned this to my neuro, but he didn’t seem too concerned. Is this something I should see my regular doctor about?

      How are you feeling after your treatment this week? I was stubborn too and didn’t want the wheelchair but my doctor told me that falling is the worst possible thing that could happen to me so between my neuro and my husband, I was left with no choice. LOL!

    • Anonymous
      September 23, 2011 at 9:03 pm

      I sent you a Private Message-click on top right of page that say “Welcome mrsjmanning”.

      CIDP can cause nerve damage anywhere in the body and some have their bladder/bowel control affected. Ask your neurologist about this. For constipation I suggest seeing your family doctor.