don't want to wear out my welcome, but

knee pain · 04-05-2004, 07:59 PM

Hi Everyone, First I want to thank you all for the wonderful information on medication and managing pain. I have learned so much from this forum. I have had to have my knee replaced three times and with the 2nd replacement a turniquet was left on so long that my leg was left paralyzed for 3 days. When the movement finally returned a fire had been started. I have burning pain from my thigh to my toes and have tried most all of the medications listed on this site with the exception of a pump. I had always refused to stay on LA drugs because no one ever told me you get use to the drug after time and you won't spend the rest of your life sleeping. I work full time and on the LA drugs, I couldn't get out of bed for work. I would just stop the drug and go back to my BT drug of oxicodone 5mg, 12 a day. It was not until my pm doc sent me back to my pcp for treatment (I was taking the same drug for the last 4 years) that I was put on Avinza and didn't want to fight with my pcp, at least not the first month anyway. I never knew the terrible drowsiness would pass over until I found this site and heard from Shoreline. My pcp started me on 120 mg of Avinza and I was totally snowed. I told her it was just too much and she drop it to 90 mg. after reading the information from Shore I droped the dose to 30mg the first few days then went to 60mg and now I am taking 90mg and I am able to work however I am still having a little difficulty with being tired. I come home and go to bed, my question, finally is..I seem to use almost as much BT drugs as before. This drug does not hold me thru 24 hours. I am awakened every 3 to 4 hours at night with what seems to me more pain than before. My pcp is on vacation so can't talk with her, but doesn't seem to make sense to me why I should be in more pain when I am taking more drugs than I did before. I think the Avinza gives me more relief but after about 8 hours I am in more pain than I ever was before I was on it. I am probably using 8 oxycodone on top of the 90 mg of Avinza. I don't understand it? Shouldn't I be having little to no BT pain on this dose when I had not taken anything but oxycondone prior to this?
I do think the BT med now gives me more relief than I had before, but I don't like taking more pain medication.

surgicaldisaster · 04-07-2004, 02:59 PM

Hey Knee, sorry, I did not see your post....I get on the puter when my kids let me! I hear what you are saying...possibly this med is not for you(?), meaning the Avinza. Everyone responds differently to different meds. I have found this to be so true with myself. One LA med. may do pretty much nothing where another is great!! Any long acting med takes breaking in as you said, but at this point, if you really don't want to increase the Avinza, perhaps another med might be in order, give it some time and see what ya think. Just suggestions, perhaps if Shore sees this, he might have some better advice. Also, have you tried any other long acting med(or did I miss it?), cuz if not there are sooo many to try, possibly one that might not make you as tired too. Please keep me posted on how you make out with your Dr. and how you are k? Sorry again for posting the reply so late!! Surgical Disaster

knee pain · 04-07-2004, 09:12 PM

surgicialdisaster thanks for reasuring me. I was sure I "had worn out my welcome" and was excommunicated from the site (lol). You asked about other meds I have been on, I have tried most of them but never would continue taking them because they made me so sleepy. I am able to work full time and when they would try different drugs on me I would take one or two doses and be so tired that I stopped them. No one ever told me to start out gradually and increase the dose after a few days. I would start out on the full dose and take it twice then go back to my oxycodone every 3 to 4 hours. Don't know why that didn't make me as tired as the la drugs, but I could function, however I was always in a lot of pain. The avinza, after I found this site, did the same thing until I cut back took 30mg for 4 days then went to 60 then went to 90 and I am not tired so I am guessing, had I taken the other drugs that way they might have made my life better. The Avinza is great for about 8 to 10 hours but then I am back to using 10 mg of oxycodone every 3 to 4 hours until my next dose of avinza. I take it about 6pm but can't make it past 3am when I am in screeming pain again. I have used most of the drugs listed on this site but never more than 2 days at a time. I stopped taking the neunrotin and the zoloft they made me tired. They put me on topamax that changed my personality and I stoped that, however I did loose 20 pounds before I stopped it. Loosing weight was the only good thing it did for me. I am going to ask my pcp(I no longer go to pm doc, they are all out of business for one reason or another) and referred me back for my pcp to manage. I had the duragesic patch, hated that. I don't see anyone who is on Avinza. Seems like oxycontin is used a lot. I was on that and lasted about 2 days. I threw more drugs away. I don't know why she pick out this drug to put me on but I didn't want to fight with her as I have just started out with her taking over the pain management and she does not know me very well and we have not yet developed the trust I had with my pm doc. Do you think she will think I am just looking for drugs? I have been with the pm docs for over ten years and she has all their records on me. I don't think I should walk in and tell her I found this forum and she needs to change my drugs. Might not go over too well, but I don't want to be taking 120 mg of avinza and another 30mg of oxycodone when I was only taking 60 of oxycodone for over 4 years. I guess I have never given any of th la drugs a fair trial.
Avinza can't be that good or seems like more people would be using it or maybe it is because it is a very expensive drug and ins. company's will not pay for it (I have wc so they seem to pay for whatever drug that I have a script for as long as it is for leg pain). Any help is appreciated.

carol632 · 04-07-2004, 10:27 PM

If you have a lot of nerve pain, talk to your doctor about methadone. It worked better for me than anything else. You do have to start slowly, 5mg 3 times daily or maybe even just twice a day, and slowly build up the dosage til you hit the amount that will make you comfortable without putting you to bed. I know the first few days, I was really sleepy, so I dropped to twice a day for 5 days then added another dose. It takes a few days for it to start working, but once it does, it has been like a miracle for a lot of people.
When first on it, you may need to take more of the bt meds for a while but in a couple of weeks, you should be getting enough of the methadone to be able to cut back on the bt meds.

An added benefit: methadone is very inexpensive!

Carol

lindao1 · 04-08-2004, 01:50 PM

Hi there!

There's no such thing as wearing out your welcome here! If that were the case, I would have been long gone LOL! Really, everyone on these boards are so kind and caring and knowledgable. We are here for each other and it's proved to be such a great comfort to me, and I think you will, over time, agree with that.

I was tried on the Avinza and in my experience, there is no way that it lasts for 24 hours. In fact in did very little to control my pain. I was so disappointed in it. Another problem I had was I developed the most devastating episode of depression I could ever imagine. That's really putting it mildly. I've never experienced anything like it. I was on it for apprx. one month and during that time, the depression slowly developed to the point where it felt like a very dark cloud had descended on me and I cried everyday for no reason. I'm not one who has a history of clinical depression and even with chronic pain, I could always manage to cope. I know it was the Avinza because after I went off of it, I returned to my ole self in no time. What a relief it was. I don't want to give you the impression that you will experience the same thing. Everyone is different. But the fact that it did little for my pain was enough in itself to dissuade me from continuing on it. The awful depression was the icing on the cake to say "adios" to it!

There are so many different LA meds available. I think maybe the biggest problem for you is that you didn't give any enough time to become adjusted to the side effects. Granted, some do have side effects that just don't go away. But most will, in due time, acclimate to the initial effects of sedation and fatigue. It just takes time. I'm on oxycontin and it is one of the few that do not give me unbearable side effects. In my case, it seemed to give me more energy and very little sedation. Of course, that's just me. I feel that 2 days worth of use is no where near enough time for side effects to level out.

I hope you will be willing to try other meds and work thru the initial effects. I know with working a job that can be very difficult but ultimately you may start to feel the beneficial effects of the meds. Most times finding the appropriate med for an individual can be a crap shoot but I think we've all had to go thru it at one point or another. Whatever you decide, I wish the best for you. Please keep us posted and know that we are here for you. Good luck, Linda