Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group scared about pain killers

http://en.wikipedia.org/wiki/Serotonin_syndrome

In reading up, it is cumulative with also some of the other opioids, which I did not realize. Maybe this is why tramadol was taken out of my repetoire since I was using cymbalta, lyrica and vicodin already?? anyway, just wanted to raise the awareness and be careful my people...

Jess xo

I think what the doctor is looking at is that your body can become used to the pain killer and the affect ware off. Rather than keep bumping up the dose which could increase dependence he may be looking to try something else.

Tim

Just wanted to put you mind at ease, if I can. I have been on extended release pain meds for 5 years. I was the same as you and it took a lot of convincing on my 2 docs part to get me to try it. I started with the lowest dose Oxycotin, 10mg 2x day with Oxycodone 5mg as needed. It worked great and only had to increase it once in 5 years. I had absolutely no side effects and they kept track of every pill I took. My insurance recently cancelled coverage of the Oxycotin and I had to change to Fentynil patch. Works okay, no side effects either.
A good doc won't give you any more than you need so you don't have to worry.
Good luck
Cindy

Wow Brad,

You have a reputation for long posts but that must be your longest!!

Very good, though. I'm always happy when people reinforce the difference between addiction and physical dependency.

I'll just throw in my own experience which I think backs up what you're saying.

After several months on percocets (oxycodone and acetaminophen), my doc put me on fentanyl patches as a better alternative. They work like extended release opioids but deliver the dose transdermally (through the skin). I remember that Angelmom and I were on them at the same time and she gave me lots of good advice when I was first contemplating trying them.

I started on 25 mcg fentanyl but quickly bumped up to 50 mcg because the 25s were inadequate. I didn't experience anything negative at all - no fuzziness, no highs, no zombieness etc. They simply worked to reduce my pain 24 hours a day. In addition, for a couple of months, I also took percocet for breakthrough pain and, at my worst, was taking percocet every 4-6 hours on top of the fentanyl. This was when I was at school and studying 17 hours a day so you can see that my brain was still working fine - it was just my body that was malfunctioning. Even with all those pain meds, I was never pain free - just down to a manageable state but I was still using a cane to walk.

Eventually, I went back on prednisone and, as soon as that started to work, I was able to drop the percocet and rely only on the fentanyl.

Then, after about a month, I was ready to reduce the fentanyl from 50 mcg to 25 mcg. I went through mild withdrawal symptoms for 3-4 days. I knew what to expect because I work with an addictions counsellor who assists young people to detox off serious drugs. So she gave me her information sheets which was great. None of my withdrawal symptoms were more than mild (because I was lowering my dose, not coming off it). I had a mild runny nose, mild bowel issues, some mild sweating/shivering and a bit of anxiety. I stress that all these were mild - as I knew what they were, I really wasn't too bothered. I watched movies for a couple of days to distract me and then I was fine.

Last week, I lowered my fentanyl again from 25 mcg down to 12 mcg in preparation for coming off altogether next week. This time, the withdrawal symptoms were even milder. No bowel problems, a little bit of runny nose, some slight sweating and that was it.

One of the benefits of the fentanyl patches has been the consistency of the delivery of the drug which means that, after you adjust, you have no sense of being on a drug at all. There's no ups or downs because of the continuous delivery through your skin. I just felt completely normal other than having pain reduction. I've been able to work, to drive and right now, to finish up my thesis for my MBA.

I don't know that everybody's experience is like mine but I thought I'd describe it to reassure others that it can be a good experience and very helpful. Not scary at all.

I have no signs of addiction (I don't think I have an addictive personality anyway). All I have is the normal physical dependency which, as Brad says, is easy to deal with when you're ready.

Once I'm off the fentanyl, I will go back to short acting opioids to deal with times when my pain is up. The meds I'm on seem to be reducing my pain and inflammation but I still have times when I need pain meds. However, because I'm not having continuous debilitating pain anymore, it seems ridiculous to be taking opioids on a continuous basis.

When I started the fentanyl it was absolutely the right thing to do and made it possible to keep going.

Good luck with your decisions, Garden Girl.

Thanks again, Brad, for your brilliant dissertation!

Hi Megan,

I didn't like driving while on the short term oral opioids - I could tell the difference as the drug kicked in and then slowly wore off. On fentanyl patches, I was on an even keel the whole time and, except for the fact I had a patch on my skin and had to remember to change it every third day, I wouldn't have known I was taking a drug (once I got settled into it). If you've been on oral opioids, you shouldn't have much trouble adjusting. I think they'd knock you flat if you were not used to morphine. They make the 12mcg strength for people who haven't adjusted to morphine yet. The normal starting dose would be 25 mcg.

I don't like driving a long way (an hour tops) because I'm prone to getting dozy after a while and that could be the fentanyl. I don't suffer from it when I'm busy at home or work but sitting in the car for any length of time does make me get sleepy. I would drink coffee to offset it. I avoided driving for more than an hour without a long break. When I went to Victoria to visit my daughter, I caught the train so as to avoid the long drive.

It might be worth a try for you, although Angelmom seems to have found them more debilitating than me. That could be because Lisa was on such a high dose.

I hope they get this porphyria under control for you soon.

Thanks for the warning Jess! It is a real danger- I had it happen last year because my two (former) doc were not coordinating my meds- not a fun time at all!

I am on a strict dosing schedule and there is always atleast 6 hours between the tramadol and my trazadone at night.

Good job catching this- I should have mentioned it. Everyone please be careful about this. Also make sure your doctors know what meds you are taking!!

Anna

Hi Wendy,

I think you're right about that being my longest post ever. In fact, I'm almost embarrassed to say that it clocked in at a rathergargantuan 6,000 words (well, just under that mark, but close enough for rock and roll). As always, I honestly didn't intend to write that much, I promise! I mean, I knew it would be a bit of a long post due to the fact that I am passionate about ensuring that correct information is disseminated here when it comes to opioids, but I really didn't set out to cover the topic comprehensively. When I got about halfway through it and realized that it pretty much had turned into a comprehensive look at long-acting vs. sort-acting pain meds, I figures I might as well finish things the right way and cover everything. Even with that decision made, there were at least three occasions when I thought I was writing the last paragraph, only to remember some issue I had ignored completely. Ah well, as I said in my closing note, at least now I have something I can refer back to again and again any time a new pain medication question is posed.

I'm glad you brought up the fentanyl patches and glad you have had a good experience with them, I seem to always forget to throw the patches into the discussion of long- versus short-acting (oh no, I guess I will have to add more to the dissertation at some point!). I think I forget because I have only used them myself once, and that came when I was in the hospital following one of my big surgeries (can't remember which one--d'oh!). Unfortunately, I do remember that I did not have the kind of experience you did. In fact, while it took me a couple patches to figure out, I soon learned that the patches were not my cup of tea because, like clockwork, they made me sick as a dog after about 10-12 hours of wearing one. They tried giving me anti-nausea meds, changing the location of the patch, and just about everything else they could think of, but none of it helped. I went ahead and tried a third patch just to confirm that our suspicions about what was making me sick were correct, and sure enough, about 10 hours later we had that confirmation. As I recall, the only reason I even tried the patches that time was because one of my docs during that stay thought that the patches might be a better long-term option for me than the oxy, so why not try them now when it would be very easy to compare and contrast. Nice try, but the experitment was short lived and a total failure. Bummer.

Just one quick question for you with the other members of this thread in mind: Have you run into any problems getting them to remain in place for the entire two or three days that you are suppoed to wear each patch? I distinctly remember during my trial that the whole "stickum" situation was a really big deal and that many people were having problems getting the patches to stay on. In fact, the manufacturer was sending out these special "kits" that provided extra adhesive to help make the patches last longer. I am curious to know if they have solved those earlier problems, and, if not, how you have been able to manage when it comes to keeping the patches in place for the entire dosage period.

Brad

Interesting experience you had with the patches, Brad. I wonder if they've improved since then - when was it you tried them? I would have thought that anyone who could handle long acting oral opioids would have no trouble with them, particularly as they are not processed through the intestinal tract. Perhaps it was too strong a dose for you at that point. I'm thinking that, as they were using them after one of your big surgeries, they were looking at major pain relief and maybe tried a very high dose right off the bat. I tried the 25s for about a week, topping them up with short term percocet, before I went back to the doc and got the higher strength. So I don't know what it would have been like to start on the 50s or even higher.

I've had no trouble at all with the patches not sticking. It's important that there's no hair on the part of the body that you're applying them which may be easier for women. My most successful spots were upper arms at the front, towards the inside of the arm, and the two sides of the upper chest - not in the hollow in the middle but on the pectoral muscles. The chest areas were the best for not lifting at all. I occasionally had very slight lifting at the edges on the third day when they were on my upper arms. It's important to change the location of the patch each time you put a new one on so I developed about four good spots that I rotated. That was easier with the lower dose patches because they're smaller and so take up less space. They're still stuck firmly enough at the end of three days to have to be peeled off.

Twice I forgot to change them because they were stuck perfectly well. Each time I realized by the middle of day four when I began to experience very mild early withdrawal symptoms. Primarily just starting to think "wow, I've got more pain than normal and my nose is starting to run - what's going on?" Then, of course, realizing and changing the patch in a panic. In the end I plugged it into my calendar on my iPhone and haven't forgotten since.

Anyway, they're extraordinarily convenient, only having to change them every three days and I like not putting so many meds through my poor intestinal system (I suffer from severe GERD). If it was quite a while ago you tried and, if you think you may have been put on a very high dose patch, it could be worth considering one more try, using a lower dose initially, supported by top up oral opioids as you experiment.

I guess the type of opioid could be sufficiently different to cause you nausea when others don't. So far, I've found no difference between the different strengths of opioids I've taken in terms of nausea-type side effects. It's been more a case of adjusting to gradually higher strengths.

I remember years ago when I first took T3s for a migraine, feeling completely out of it on one pill. Now, I take two percocets and might be lucky to feel slightly relaxed and go to sleep more easily. And that's on top of the fentanyl. Amazing how our bodies adjust. It's not surprising there's a withdrawal process when we have to reverse the process.

I guess prednisone is no different in its own way. Our adrenal glands stop working properly when the prednisone dose is above about 7 mg and it's quite dangerous to stop suddenly.

I enjoy your posts, Brad. They're very informative and it's fun to see you on a roll.

Hi Gardengirl13,

If you didn't have any problems with the pain meds you have taken up until this point, you should be fine. The biggest pain killers I have ever taken were Morphine and Methadone. Morphine is what they like to give me in the hospital, and I had no problems with it. Actually... I liked it, and it worked great, but it was only temporary. They make me feel warm and fuzzy inside lol (a very comfortable and relaxed feeling, I mean). The methadone worked superbly too, except I didn't like the way how it was able to knock me out so fast/effortlessly. I had to make sure I stayed at home before taking it, but just for the first couple of hours. If you have any doubts, ask to be started off with the smallest size possible so you can feel it out for a while. Oh, and if you think that some of your current meds might somehow interact with the new pain meds, be sure to bring that up to your doctor. My doctors are pretty good with these types of concerns, and hopefully your's is too. Good luck. Btw, I only take vicodin now, but I don't take the whole pills anymore.

Take care,
James