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

Thanks everyone! Brad that was quiet long, but I did read the whole thing! Thank you very much for taking the time to do it!

When I was first having pain issues I was given ultram. It worked great, took the pain right down to a 2! Best pain relief I ever had, then it suddenly stopped working altogether and gave me horrible insomnia. Not sure what the heck happened. We even tried it two years later to see what would happen and it picked up right where it left off, not working and horrible side effects.

From there I went back to vicodin (I had some from the hospital that I used very rarely for really bad pain) I started with taking half a pill as needed, which really amounted to half a pill a day for a bit then after a few months to almost a year it went to a full pill. Since then it's gone up to needing 2 pills a day and now I still only take two sometime 2.5 and need more but don't take more. Then I was sick with bronchitis for two weeks and only took 2 pills the first week and 5 the next since they wanted me to take them not for pain at all but for a cough suppressant so I could sleep. For almost two full weeks I was only in enough pain where I could just sit on a heating pad! My husband now jokes that I should be sick more often! But of course partly into the second week I was given 40mg of prednisone to get the inflammation from the bronchitis to go down. But man when I'm on prednisone I really don't need much in pain killers!

The biologics helped for a bit each, but then stopped working. the few DMARDS I've tried just make me really sick, one worked well but gave me two infections, one each time I tried it and had to stop within two weeks of starting it each time.

I was starting to get worried that I "needed" the vicodin until I got sick and stopped taking it without and problems.

But now two weeks later it's just gone wonky! I went out for halloween, my husband's band played, but we got home by 12:30, which is horribly late for me, but not really really bad like some gigs used to be. Sunday we had the band over for dinner which was very low key. By monday morning the pain couldn't be controlled. It wasn't oh my god I'm going to die, but it was probably about an 8. The vicodin that morning took it down to a 5 but two hours later my pain slowly started increasing and the vicodin seemed to be gone by 3-3.5 hours. I waited to take my second pill until it was 6 hours later since I really didn't want to take three. The Dr said I can take three but if they're not working more then 3 hours why bother?

I always thought that taking something with ER would be good since I do need to take pills in the morning and afternoon for pain. My dr wanted to try different things like neurontin and lyrica and other medications, but they all either stopped working or made me horribly sick. I hate the idea of having to take a drug everyday needed or not. That's one thing that bothers me about taking oxycontin is what if I don't need it one day? What if it's not enough another day and I don't have anything for break through pain?

As I said I've never really gone higher then 5/500, I'm not sure if just going up a dose would work for me or not. On good days I don't need as much, like when I'm home I'll take one and just relax and not do much, or do light housework to stretch a bit. And I'm fine, but some days I need two even when just doing nothing but sitting on a heating pad.

Currently the only medications I take are occasional pills for my indigestion, nose sprays for my alleriges and very rarely an inhaler for asthma. Otherwise just the vicodin and when I'm bad prednisone. I've been off the arava and remicade for a few weeks now.

I tried tylenol 3 and they didn't work at all. Percocet just makes me very jumpy and I didn't like how I felt on it. That's one thing that scares me about oxycontin is I don't like feeling like that. With the vicodin when I first took it I felt kind of high for maybe the first three pills. Then I only feel somewhat sick to my stomach. I tried crackers and bread and other things, the pharmacist said to take it with a meal, but unless it was high fat I still felt sick. If was was a medium size meal the vicodin didn't work as well. I have now found taking something small and high fat right before and somewhat during is what works best. Something like an oz of cheese or I get this really good local chocolate milk and have a few sips then take the pill and have a few more sips and I'm fine.

I go see the dr soon and will write what he says and has me do. I'll voice some concerns and listen to his suggestions. I've been seeing him for a while now and he won't increase the dose but has gone from one pill to two to three over the last 8-12 months or so.

You are more than welcome, GG, I was happy to write it and contribute to this important thread. As for your most recent post, since you have taken Percocet and not been happy with the way it made you feel, be sure to pass that on to your doctor when he is considering what--if any--long-acting med to give you. I understand why you would be nervous about oxy, since Percocet is one of the several forms of oxy, but one thing I hope you've gained from your entire thread is that you have quite a few options available to you besides oxycontin. Wendy's posts about the fentanyl patch were excellent contributions to this thread because there is a good chance that the patches might be perfect for you--they provide a consistent, long-acting pain medication; they are available in many different doses; and they have a very good track record of being easy to tolerate while causing few side effects (my experience was clearly not the norm). However, if the patch isn't the answer, nor is oxy, your doctor has many other options at his disposal. For example, a few years ago, my ex-wife had fantastic results with a newer drug (at that time) called Opana, which worked in ways that other pain meds had not and did not cause any side effects. The important thing is to try not to get yourself too worked up before talking to your doctor, or not to become too depressed either, both because you fear that there are no good options for the long-term treatment of your pain. I'm confident one of the meds out there will work for you, and work well!

While looking up Opana, I did find another article that I think you'll find useful. It addresses most of the major issues involved in making the decision to use a long-acting opioid medication and also covers other issues involved with pain medication in general. It is a bit dated--2005--but I still think you might find some good info in it. Here it is:

Pain med article

I also remembered one more very important thing (I know, I know, how could I possibly have forgotten to include something in the first post?!). It is important when seeing your doctor about the possibility of going on long-acting opioid pain meds that you not go in and ask for a specific drug by name. Even if everything you've read here leads you to believe that the drug would be perfect for you, all doctors go on high alert when ANY patient comes in and asks for a certain pain med by name and at the exclusion of all others. That's because in their experience, this is a real red flag for drug-seeking behavior, which is what addicts use when trying to find a new source of their illegal pain meds. The theory is that a real pain patient who is hurting very badly will be open to any and all solutions their doctor can provide and won't care one iota about receiving one specific drug, even if that drug has been highly recommended and sounds like a good choice. And really, that IS how a pain patient should approach things--with an open mind and the assumption that your doctor will be up on current developments in pain meds that you might not be aware of (Well, in a perfect world anyhow--every KA member knows that being called "Dr." does not automatically give a person excellent skills or make them smart; in other words, go ahead and assume your doc is on top of things and can help you in many ways--right up until he or she really disappoints you and proves otherwise, at which point your job gets a bit tougher.) Anyhow, if you do think one drug might work best for you, it is ok to mention that in a manner something like this: "In reading up on my treatment options, I discovered that many of the other AS patients I know have been successfully treated with DRUG X; do you think that might be an option for me, or is that the wrong choice in this situations?" Something along those lines works great--it allows you to steer your doc to the drug you think will be best for you, but without specifically asking for the drug and also in such a manner that you asked the doctor for his/her opinion in such a way that you put them on center stage and asked them to dazzle you with their "doctor skillz." (Tongue firmly in cheek!). This approach is never a bad idea!

OK, I'm out of things to write about pain meds again! We'll see how long that lasts.

Brad

Thanks again Brad!

OK so the dr visit didn't go as planned! Oh well, I see him again in three weeks. Here's what happened. I went in and sat in his waiting room for an hour (I swear his waiting room has the most uncomfortable chairs around, and knowing it's a pain dr it seems silly to me.) But luckily I was the last patient so he gave me a full 35 minutes instead of 15! We talked about how I was doing and I said the only thing that really helps the pain is prednisone. I know he hates prednisone. He likes cortisone shots, but won't prescribe prednisone himself, he'll only refer you to someone else for that. He asked on average how many pills I take. I told him on a normal day 2, one when I get to work and one when I get home, or right before I leave work. On a bad day that's not enough but I've never taken more then 2.5 pills in a day, but I did twice take a pill and a half at once when the pain was really bad. And on a really good day (read when on a TNF while it's working or on prednisone) I sometimes can go a day or two without, but then I stupidly do something like weed the garden and set myself up again in a slight flare. But most good days I need just one pill in the am, and using a heating pad or ice can calm pain later in the day down enough so I can manage on my own.

He said since I don't really need more then tow pills a day every day he wants to hold off on ER medications. He asked if I've ever tried morphine. I freaked a bit not knowing anything about it except in high doses for cancer pain. So he pulled back and said just keep taking the vicodin as you are, but if it's really bad take 1.5 pills. He also put me on nortriptolene (sp) which was no good! Man that stuff was evil! I can't give something like that much more then a weekend or I might as well take a week off work it was so bad!

Needless to say I woke up and popped a handful of prednisone and within 4 hours I started to feel normal again. Finally. I know he'll be mad but I needed it. I'm doing a very quick taper and will only be on it for a couple days. But already being down on the prednisone when I breath it feels like my ribs are popping. I figure I'd give the drug a try because I see my rheumy this week and will see what she says. I'm thinking if she gives me simponi or something to try hopefully that may give me another bit of time.

But I'm thinking by spring I'll need an ER drug of some sort. I talked with my husband this morning in the car (he always go to my appts with me) and told him that it's important he is behind me with this. I said if this is what it takes for me to be able to keep working for a while then this is what it takes. My pain dr is very into "making" people work and not go out on disability. He says it won't make me better by not working. He seems to not really understand how sitting at work, or doing any lifting or bending is trouble. I think he has it in his mind that I'd just be on the couch all day. Not so, that hurts just as much as being at work. But I think using that wording, that doing something ER would prevent me from needing to quit my job may make him realize how much I need better pain relief.

He says I'm a patient like no other. I'm not sure how to take that, but I know he's not saying it in a bad way. He says I'm such a lovely lady and so nice and happy, and it's hard for him to see me in such pain. He says if i was 80 he'd just give me all the morphine I want to make me happy and be able to live my life in a good way. I said well try being 33 and feeling like you're 80 with the prospect of dealing with this pain for years.

I think his biggest fear for me is my age. He seems to think I'm too young and if he gives me the powerful stuff now I won't have anything for pain relief when I'm 50. But from my standpoint that doesn't make sense. I need pain relief now, I need to be productive. I need to live my life while I still can.

I'm just not sure what to do yet. What ER drugs are there besides oxycontin and the patches. I'll have to look up Opana too.

When TNFs, DMARDS, anti-inflammatories etc stop working what's left? Just pain control. So what do I do?

Hi GG,

First of all, let me say right up front that I REALLY like everything I've read about your doctor and have a feeling I would like him a lot. Needless to say, then, based on what you've written, my first impulse is that you are very lucky to have found this doctor. I like his attitude toward starting/not starting you on the ER drugs (more on that in a second), his belief in keeping people working no matter what it takes, and especially his view that he wants to do everything he can to help you with your pain (and that if you were older and/or not working, he would absolutely do what it took for you to feel comfortable with your pain). Also, I'm afraid to say I also agree with his position on prednisone--I'll tackle that too. First in fact.

Now, that I am glad he didn't want to be the one to give you prednisone doesn't actually mean I'm totally against prednisone, because I'm not. In fact, I've been on it several times in my life, and it has always helped me feel better. However, eventually I realized that it was prednisone that was causing these bad bouts of heart arrythmia that I was suffering from time to time. I didn't make the connection until I had a bout while at my eye doctor that was bad enough to land me in the UM hospital for a couple days. When that happened, I realized I thought about thingd and realized I was in the middle of tapering off a dose of oral prednisone. Then, thinking back, I realized that, as far back as I could remember, my most severe bouts of arrythmia all happened during a prednisone dose pack or immediately afterward. Now, my arrythmia does occur at other times on its own, it's never as severe, nor does it last as long, as those times when I was on prednisone. In addition to the heart problem, I also had one other major side effect from the pred, which was increasingly severe edema in both lower legs. At first, being on pred would only case swelling in my right leg. Again, it got worse over time, and by the time of my last dose, I was getting that bad swelling in both feet, so bad I had to take lasix to help me get the extra fluid out of my body. Because I once suffered a fairly severe bout of heart failure, I don't dare ever let edema last for any length of time, as it could put more of a strain on my heart.

So, needless to say, I have eliminated oral prednisone from any of my treatment plans. Since I discovered the anti-TNF drugs, that hasn't been too much of a loss/ Well, except when I have iritis, which as most here know, seems to be all the dang time. When it does hit me, my optho used to prescribe a pred dose pack right away, and it did always help the iritis heal faster. However, since that last episode with my heart, I told him that was no longer an option. I was worried that would upset him, but I should have known better than that--he's one of my favorite doctors ever. He simply said "no problem," and switched me instead to the steroid shots in the eyelid that I wrote about earlier this week. Problem solved.

That said, I know it's not as easy for others to Just Say No to prednisone. I understand that for many, yourself included, it sounds like, prednisone is a lifeline, and I would never argue with someone who said they really had to have prednisone. Instead, I would just offer up a couple final points on my feelings toward the drug. First off, don't forget that, while it is many thing,s prednisone is NOT a painkiller. Yes, it can greatly reduce your pain, but the way it does that is far, far different from both opioid and non-opioid pain medications. It reduces your inflammation, which in turn reduces your pain, but it's definitely not a painkiller. I'm sure that is why your pain doctor will not prescribe prednisone (I sensed that you were a bit baffled as to why he would not do that for you and thus save you a trip to another doc). He may not know as much about it as he knows about pain medications, so he might not feel comfortable prescribing it, or, even if he DOES know all there is to know about it, he simply does not want to prescribe a med that is outside his area of practice.

That said, I also got the sense from your last post that his reaction to prednisone was kind of negative in general, which wouldn't really shock me. Compared to even opioid pain medications, prednisone has far, far more side effects--and far more dangerous side effects--and I'm sure that factors into his apparent dislike for prednisone. See, prednisone is a funny drug. Since it was discovered, it's been known by many as "the miracle drug" because it can do so many things and treat so many different illnesses. It was prescribed left and right when it first came out, and it's still pretty heavily prescribed now. However, since those early hears, doctors have become more and mroe aware of the potentially very serious side effects that go hand in hand with prednisone's good side and no longer overprescribe it. Such a shame, too, as it's dirt cheap and can help arthritis pain and inflammation so very much. I would never tell you not to take prednisone, especially if it works so well for you, but I would say that you need to be very careful when taking it and you should notify your doctor anytime something "odd" happens when you're on it. (Everyone should know that is strictly my opinion on prednisone, and I know that many people here swear by it. All I'm saying is, "Be careful!")

Let's move on to his reaction to putting you the ER meds right now. Honestly, I think he might have made the right decision in this case. *pausing for your stunned reaction* Didn't I just say in my novel-length post that it would be good for you to get off the vicodin and get on an ER med? Yep, that was me. However, I either missed it in your first post, or didn't know, that you only take one in the morning and one at night, 1.5 tops. That actually IS a very lose dose of both the hydrocodone and the acetaminophen (although recent studies have shown that the amount of acetaminophen that should be considered dangerous is lower than once thought, so check that). At such a low dose, it really isnNOT essential that you make an immediate switch to a long-acting ER drug. At only two pills a day typically (and some periods where you don't take any for a couple days in a ros), you aren't in any immediate danger, nor is vicodin necessarily a bad choice for you. Well, it's not a bad choice, but with a couple of very big caveats.

First off, let me say that what I hear in your posts is that you are simply not getting enough pain relief right now. This is reflected in the fact that you've felt the need to take 1.5 pills after work more often than in the past, plus your need for the prednisone, plus the thing that kind of launched this whole thread, your desire to see your doc to see if there are better options for you. If I'm wrong about this, and you feel like you do get adequate pain relief the majority of days (say, four out of five working days), then just skip this part and read on after it. If I'm right, then continue reading!

I know you at least showed some concern for the pain relief you get from the vicodin because you told him about taking 1.5 pills and asked if that was ok. Let me ask you this, and I ask purely from a place of caring: Were you completely honest with him about how much you've been hurting, and how much relief you get from the vicodin? Have you been completely honest with yourself about how much you're hurting? I ask these questions for two reasons: 1) Because until you can honestly answer these questions, you really can't achieve adequate pain relief. 2) I get the very clear sense from your posts that you are still quite scared of taking ANY pain medication, but especially the ER meds, which you view as "stronger" than the vicodin. By moving to the ER meds, are you afraid that you're taking another step downward in the progression of your disease because you now have to take these "stronger" meds, which you've dreaded doing for a long time? (Trust me, there is NO reason to be ashamed if you answered "yes" to ANY of the questions I just asked. Being afraid of opioid pain medications is an incredibly common reaction among almost all human beings, but especially those who are facing an immediate decision on whether or not to use them. Again, I'm not asking any of these questions because I think you've done anything "wrong," but just so you can put yourself in the correct place emotionally and mentally to make decisions that YOU know are best for YOU. Capische? )

OK, I hope you're still with me and that you didn't stop reading because you were mad at me. I'll assume you are! One thing I didn't mention yet is that being a little scare of opioid pain meds is a good thing anyhow. They ARE powerful drugs, and it is possible to become addicted when taking them (not physically dependend, remember, but addicted)--they should always be treated with respect and a little fear. However, I don't want you to fear them so much that you are too afraid to make the jump to a better med that could really help you, which is where I sense you are now. Earlier I put the word "strong" or "stronger" in quote marks when talking about the ER drugs when compared to drugs like Vicodin. That's because just because they are extended release drugs, that does NOT mean they are automatically STRONGER than the short-acting meds like vicodin. For example, I am pretty sure that a 10mg dose of oxy would not be considered as strong as the extra-strength dose of vicodin that is commonly prescribed (I'll admit here that I could be wrong on this--I didn't have time to stop and look up the actual conversion rates and pharmacology. I will hopefully do that later and edit this section.). No, the only true difference between an ER pain med and vicodin is that the ER med is designed in such a way that it slowly releases the amount of pain medicine over the course of 12 full hours, instead of releasing it into your system all at once. Answer this for me please: When you take that 1 vicodin in the morning, does it quiet your pain for your entire 8-hour work day? Or, do you start to hurt worse at about the 4-hour mark, 6 hours at the latest? I'll be shocked if you don't choose the second answer. If you do choose that one, then you really eed to convey that to your pain doc at your next appointment. See, vicodin is designed to wear off after 4 to 6 hours, so if you do NOT start feeling worse during your day, to be honest it's not because the vicodin is still in your system and working. No, in that case, you would still feel ok because the vicodin knocked your pain down in the morning, and once it was down, it doesnt' go back up unless it has a reason to. For a long time, my pain would react like that, but the longer I was on vicodin, the less it happened. There is also a chance that your brain is pushing you hard to reach the end of your day and sending strong signals (and making lots of endorphins on its own!) that you aren't hurting much. If that heppens, I bet you have days where, once you get through your front door, your body seems to say, "Oh thank god we're home, I can let go now!", and voila, all of a sudden, your pain is back with a vengeance. The result? You probably need 1.5 pills those days because your pain hit all at once with full force.

If that latter example never happens to you, then the 1.5 pills you sometimes need at the end of the day must be because the vicodin DID quite working after 4 to 6 hours and you were really hurting by the end of your 8 or 10-hour day. If that is what happens, then you've got another sign that the short-acting meds really aren't working for you, at least not the way they should. Actually, if in fact I'm right and your current pain meds ARE failing you even more than you've let on here, then it really doesn't matter WHY you sometimes need 1.5 pills, nor does it matter if you're making it through your full work day without hurting too badly, only to break down and really, really hurt when you get home. The bottom line is this: You don't have to hurt that much. Read that again; heck, say it out loud a few times. YOU DON'T HAVE TO HURT THAT MUCH. Yes, in a semi-perfect world (won't say perfect world, because then AS wouldn't even exist!), either the anti-TNF drugs, or the disease-modifying drugs, or something else, would give you the excellent pain control your seeking. That isn't happening,. however, and I assume it won't be happening anytime soon because you haven't mentioned any other options on the horizon. That sucks, if it's true. But, if you don't have other options, then it sounds like you have reached the point where opioid pain meds are the best option you have to really, raelly control your pain, and not just once in a while.

This is where that whole idea of the ER drugs being "stronger" than the short-acting meds comes back into play. Think of it this way: You've already overcome the biggest hurdle, which is to take opioid medicine in the first place. You jumped that one when you decided you needed vicodin to relieve your pain. Because you've done that already, making the decision now or in the near future to switch to the ER drugs is, honestly, a much, much smaller decision with fewer implications than the decision to use opioids in the first place. All you're doing now is deciding to take a different type fo the drug you're already taking, and have been for some time. That's because all of the bad things that can happen to you when taking an ER pain med, an happen to you while on vicodin. However, we've already shown that there are plenty of positives that an ER drug can bring to your pain treatment as opposed to short-acting meds.

I know it seems like a simple "re-covered" a lot of ground I talked about in my first post, and maybe I did, but everything in this post was born of my sense that you are still very afraid of the ER drugs when compared to the "safer" vicoding you're already taking. As I said, I could be totally wrong about that, and if I am, I apologize and you can ignore all this. In addition to that fear aspect, I think you have made it clear that you view all ER drugs as being "stronger" than the short-acting drugs. I tried to clear up that last misconception, but I'm not sure I did a good enough job. Taking one more crack at it, you should consider this all as a matter of dosage level. If you have a low-dose of an ER med, as I explained earlier, it really isn't stronger than the extra-strenth vicodin. If a low dose of the ER med is not enough to control your pain and you have to increase your dosage, yes, there is no denying that you would be taking a truly stronger pain reliever than the amount of vicodin you are taking now. However, look at that latter fact this way: Whereas you take 2, maybe 2.5 vicodin every day, back when I took it, I was taking at least 6 a day, sometimes 8 if I was up late enough. That was 2 in the morning, 2 in the afternoon when those wore off, 2 more before bed, and, if it was a late night at the poker table, once in a while 2 more before I called it a night. Now, my script only called for a max of 6 per day, so if I took 8 on any day, I would have to pick a day later in the month to only take 4.

When you hear that kind of vicodin dose, I think you can see how the amount of opioid I was getting from my daily dose was probably just as high as the first dose of oxy I started out at, which was 20mg twice a day. (Again, I'll check the actual comparisons later.) Thus, my switch to oxy didn't happen because my doctor thought I needed a "stronger" pain reliever, it happened becasue he wanted to get me off that much acetaminophen AND because he knew that if I was having that much pain, it would be much smarter to put me on a long-acting drug that would actually control my pain for 10-12 hours at a time. That way, I would no longer haveto go through the terrible cycle of 3-4 hours of pain control followed by 2-3 hours of bad pain that happened every day with my vicodin. In fact, I was really, really tired of that up and down cycle by the time I approached my doctor about taking a long-acting med, and when I did make the switch, it was like the clouds had been peeled away from my life and I could see the sun again. What a relief it was to take 1 or 2 pills in the morning before work and not think about my pain the rest of the day. Seriously, as soon as I started the oxy, I was SO much more comfortable at work that I was just stunned. One dose, and I suddenly had all-day pain control. I no longer had to remember to take pills to work with me (and man, I forgot ALL the time), no longer did I have to go through the ritual of crushing the vicodin and mixing it with pudding to take (they were too big for me to swallow easily), and no longer did I have to worry about getting caught in a four-hour meeting as my vicodin wore off (that sounds silly, but it *sucked*, trust me!). All of this came about not because of a huge increase in the amount of opioid pain reliever I was receiving, but rather because I was taking a more effective opiod for the type of pain I had.

I hope all that made sense--I'm kind of tired and I've really had a bad day and I'm hurting quite a bit tonight. While I have my COBRA back finally, my Remicade treatment isn't until Wednesday, and until then, yikes. Before today, I had 3 or 4 days in a row that were relatively good--I didn't need my mom or dad to come down then--but today I did have to break down and call my mom because I knew I couldn't take good care of myself on my own. Thus, if this post kind of drifted all over, was redundant, or otherwise didn't make sense, well, sorry about that! Just to reiterate my main points:

**Be honest with yourself and your pain doctor so the two of you can now work together to choose the best pain med for you.
**If I'm wrong and your current vicodin dose--with the occassional 1.5 dose he gave you permission to take--is doing a decent job for you, then his decision to leave things as are and not make the switch to an ER med is totally fine since you're not getting that dangerous dose of acetaminophen I was worried about.
**ER opioids, on their face, are not inherently "stronger" than the short-acting meds you are currently taking, they just use a different delivery method, one that will, in the long run, be more effective for you. Therefore, you can hum along to the tune of Blue Oyster cult's "Don't Fear the Reaper" and sing this with me, "Don't fear the ER! (Yeah, I know, that was awful--I'll hate myself in the morning and just blame it on my altered state!(

I think those are all the key points. And yeah, yeah, I can hear a few of you now: Dang it Brad, if those are the key points, why in THE he** did you have to ramble on for several thousand words to make those points? To which I reply: If I knew the answer to that, I'd probably annoy my friends and family a lot less often!

And so it goes . . . .

Brad

OK Brad I'm going to answer this wonderful post slowly and carefully

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Hi GG,

First of all, let me say right up front that I REALLY like everything I've read about your doctor and have a feeling I would like him a lot. Needless to say, then, based on what you've written, my first impulse is that you are very lucky to have found this doctor. I like his attitude toward starting/not starting you on the ER drugs (more on that in a second), his belief in keeping people working no matter what it takes, and especially his view that he wants to do everything he can to help you with your pain (and that if you were older and/or not working, he would absolutely do what it took for you to feel comfortable with your pain). Also, I'm afraid to say I also agree with his position on prednisone--I'll tackle that too. First in fact.

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yes, he is one of my favorite drs. He is funny, easy to talk to, my GP loves him because after every single visit with me he mails him info on how I'm doing.

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Now, that I am glad he didn't want to be the one to give you prednisone doesn't actually mean I'm totally against prednisone, because I'm not. In fact, I've been on it several times in my life, and it has always helped me feel better. However, eventually I realized that it was prednisone that was causing these bad bouts of heart arrythmia that I was suffering from time to time. I didn't make the connection until I had a bout while at my eye doctor that was bad enough to land me in the UM hospital for a couple days. When that happened, I realized I thought about thingd and realized I was in the middle of tapering off a dose of oral prednisone. Then, thinking back, I realized that, as far back as I could remember, my most severe bouts of arrythmia all happened during a prednisone dose pack or immediately afterward. Now, my arrythmia does occur at other times on its own, it's never as severe, nor does it last as long, as those times when I was on prednisone. In addition to the heart problem, I also had one other major side effect from the pred, which was increasingly severe edema in both lower legs. At first, being on pred would only case swelling in my right leg. Again, it got worse over time, and by the time of my last dose, I was getting that bad swelling in both feet, so bad I had to take lasix to help me get the extra fluid out of my body. Because I once suffered a fairly severe bout of heart failure, I don't dare ever let edema last for any length of time, as it could put more of a strain on my heart.

So, needless to say, I have eliminated oral prednisone from any of my treatment plans. Since I discovered the anti-TNF drugs, that hasn't been too much of a loss/ Well, except when I have iritis, which as most here know, seems to be all the dang time. When it does hit me, my optho used to prescribe a pred dose pack right away, and it did always help the iritis heal faster. However, since that last episode with my heart, I told him that was no longer an option. I was worried that would upset him, but I should have known better than that--he's one of my favorite doctors ever. He simply said "no problem," and switched me instead to the steroid shots in the eyelid that I wrote about earlier this week. Problem solved.

That said, I know it's not as easy for others to Just Say No to prednisone. I understand that for many, yourself included, it sounds like, prednisone is a lifeline, and I would never argue with someone who said they really had to have prednisone. Instead, I would just offer up a couple final points on my feelings toward the drug. First off, don't forget that, while it is many thing,s prednisone is NOT a painkiller. Yes, it can greatly reduce your pain, but the way it does that is far, far different from both opioid and non-opioid pain medications. It reduces your inflammation, which in turn reduces your pain, but it's definitely not a painkiller. I'm sure that is why your pain doctor will not prescribe prednisone (I sensed that you were a bit baffled as to why he would not do that for you and thus save you a trip to another doc). He may not know as much about it as he knows about pain medications, so he might not feel comfortable prescribing it, or, even if he DOES know all there is to know about it, he simply does not want to prescribe a med that is outside his area of practice.

That said, I also got the sense from your last post that his reaction to prednisone was kind of negative in general, which wouldn't really shock me. Compared to even opioid pain medications, prednisone has far, far more side effects--and far more dangerous side effects--and I'm sure that factors into his apparent dislike for prednisone. See, prednisone is a funny drug. Since it was discovered, it's been known by many as "the miracle drug" because it can do so many things and treat so many different illnesses. It was prescribed left and right when it first came out, and it's still pretty heavily prescribed now. However, since those early hears, doctors have become more and mroe aware of the potentially very serious side effects that go hand in hand with prednisone's good side and no longer overprescribe it. Such a shame, too, as it's dirt cheap and can help arthritis pain and inflammation so very much. I would never tell you not to take prednisone, especially if it works so well for you, but I would say that you need to be very careful when taking it and you should notify your doctor anytime something "odd" happens when you're on it. (Everyone should know that is strictly my opinion on prednisone, and I know that many people here swear by it. All I'm saying is, "Be careful!")

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Yes, he doesn't like prednisone due to the side effects. He'll do cortisone shots because he says it's such a low dose and very local. He said it would be wonderful if they could find something like prednisone for someone like me that would be better with the side effects. He said it's such an old drug he can't understand why they haven't done more with it. I also asked why they don't have an ER version of vicodin and he said yes, another old drug that needs improvement, as in an ER version. He said that would probably be his choice for me in the future since I tolerate the vicodin so well.

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Let's move on to his reaction to putting you the ER meds right now. Honestly, I think he might have made the right decision in this case. *pausing for your stunned reaction* Didn't I just say in my novel-length post that it would be good for you to get off the vicodin and get on an ER med? Yep, that was me. However, I either missed it in your first post, or didn't know, that you only take one in the morning and one at night, 1.5 tops. That actually IS a very lose dose of both the hydrocodone and the acetaminophen (although recent studies have shown that the amount of acetaminophen that should be considered dangerous is lower than once thought, so check that). At such a low dose, it really isnNOT essential that you make an immediate switch to a long-acting ER drug. At only two pills a day typically (and some periods where you don't take any for a couple days in a ros), you aren't in any immediate danger, nor is vicodin necessarily a bad choice for you. Well, it's not a bad choice, but with a couple of very big caveats.

First off, let me say that what I hear in your posts is that you are simply not getting enough pain relief right now. This is reflected in the fact that you've felt the need to take 1.5 pills after work more often than in the past, plus your need for the prednisone, plus the thing that kind of launched this whole thread, your desire to see your doc to see if there are better options for you. If I'm wrong about this, and you feel like you do get adequate pain relief the majority of days (say, four out of five working days), then just skip this part and read on after it. If I'm right, then continue reading!

I know you at least showed some concern for the pain relief you get from the vicodin because you told him about taking 1.5 pills and asked if that was ok. Let me ask you this, and I ask purely from a place of caring: Were you completely honest with him about how much you've been hurting, and how much relief you get from the vicodin? Have you been completely honest with yourself about how much you're hurting? I ask these questions for two reasons: 1) Because until you can honestly answer these questions, you really can't achieve adequate pain relief. 2) I get the very clear sense from your posts that you are still quite scared of taking ANY pain medication, but especially the ER meds, which you view as "stronger" than the vicodin. By moving to the ER meds, are you afraid that you're taking another step downward in the progression of your disease because you now have to take these "stronger" meds, which you've dreaded doing for a long time? (Trust me, there is NO reason to be ashamed if you answered "yes" to ANY of the questions I just asked. Being afraid of opioid pain medications is an incredibly common reaction among almost all human beings, but especially those who are facing an immediate decision on whether or not to use them. Again, I'm not asking any of these questions because I think you've done anything "wrong," but just so you can put yourself in the correct place emotionally and mentally to make decisions that YOU know are best for YOU. Capische? )

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Ok this part made me cry. The main reason I'm scared about going on ER isn't just taking pills when not needed and having to take them everyday, although that is a large part of it. The main part is, that means I'm admitting this disease is getting the best of me. It means I'm losing the battle. It means I'm getting worse, and will get worse yet. In all honesty it's only 1 day a week that's a good day. Every other day I'm taking two pills. I've told him that but I'm not sure he REALLY heard me. Sure he heard me, but I think he only heard the I can go a day with only needing one pill, and that sprung up a flag saying well if I have a day a week of relief then I don't need ER medications. But I stupidly failed to mention that this day a week I'm normally home, not at work. Not counting weekends, where i tend to push myself physically a bit more and in turn will need two pills. But on my day off each week when it's just me at home and I can totally relax and not go anywhere that day. I'll need to tell him this more forcefully so he really hears.

Honestly I think i'm projecting this fear of progression/feeling worse off when talking with drs.

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OK, I hope you're still with me and that you didn't stop reading because you were mad at me. I'll assume you are! One thing I didn't mention yet is that being a little scare of opioid pain meds is a good thing anyhow. They ARE powerful drugs, and it is possible to become addicted when taking them (not physically dependend, remember, but addicted)--they should always be treated with respect and a little fear. However, I don't want you to fear them so much that you are too afraid to make the jump to a better med that could really help you, which is where I sense you are now. Earlier I put the word "strong" or "stronger" in quote marks when talking about the ER drugs when compared to drugs like Vicodin. That's because just because they are extended release drugs, that does NOT mean they are automatically STRONGER than the short-acting meds like vicodin. For example, I am pretty sure that a 10mg dose of oxy would not be considered as strong as the extra-strength dose of vicodin that is commonly prescribed (I'll admit here that I could be wrong on this--I didn't have time to stop and look up the actual conversion rates and pharmacology. I will hopefully do that later and edit this section.). No, the only true difference between an ER pain med and vicodin is that the ER med is designed in such a way that it slowly releases the amount of pain medicine over the course of 12 full hours, instead of releasing it into your system all at once. Answer this for me please: When you take that 1 vicodin in the morning, does it quiet your pain for your entire 8-hour work day? Or, do you start to hurt worse at about the 4-hour mark, 6 hours at the latest? I'll be shocked if you don't choose the second answer. If you do choose that one, then you really eed to convey that to your pain doc at your next appointment. See, vicodin is designed to wear off after 4 to 6 hours, so if you do NOT start feeling worse during your day, to be honest it's not because the vicodin is still in your system and working. No, in that case, you would still feel ok because the vicodin knocked your pain down in the morning, and once it was down, it doesnt' go back up unless it has a reason to. For a long time, my pain would react like that, but the longer I was on vicodin, the less it happened. There is also a chance that your brain is pushing you hard to reach the end of your day and sending strong signals (and making lots of endorphins on its own!) that you aren't hurting much. If that heppens, I bet you have days where, once you get through your front door, your body seems to say, "Oh thank god we're home, I can let go now!", and voila, all of a sudden, your pain is back with a vengeance. The result? You probably need 1.5 pills those days because your pain hit all at once with full force.

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Again you hit the nail on the head. They now wear off at about 3.5 hours. I used to be able to feel them wearing off at 4, then really were gone by 6. Now it barely makes it to 4 before it feels like it's totally gone. I don't take another pill because I'm a glutton for punishment apparently. Again it's the same reason. If I have to take more then three pills a day I'm getting worse. It's like there's a gap in the floor ahead of me and as long as I can not have to jump I'm ok, even though my pain levels are not ok any more. I do try to fight through the pain and in turn when I get home I flop on the couch with the heating pad and just think "this is my life?" On my good day when I can just relax and putter through my day, just doing light housework and maybe going into the garden to shoot some flowers, I can do OK on one pill as long as the days before I could control the pain. If say the two days before were bad days then my day off is the day I really try to get a grip on the pain and get it under control.

Like today, I've been at work sitting at my desk for almost 2 hours. I took a vicodin about 45 minutes ago since my back hurts really bad and it's hard to breath (ok let me say that correctly, it's not hard to breath, it hurts my back and ribs to breath, big difference!) I still can't tell I even took it. It's not helping at all. Meaning if I can't get this under control that's when it gets worse to the point of not getting it under control without other means (meaning taking time off from work and resting, or taking 1.5 pills, or the dreaded prednisone (trust me I have a huge love hate thing with that drug!))Even with getting up and walking, or stretching in my chair, nothing helps. Days like today make me feel like I'm losing, AS is winning.

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If that latter example never happens to you, then the 1.5 pills you sometimes need at the end of the day must be because the vicodin DID quite working after 4 to 6 hours and you were really hurting by the end of your 8 or 10-hour day. If that is what happens, then you've got another sign that the short-acting meds really aren't working for you, at least not the way they should. Actually, if in fact I'm right and your current pain meds ARE failing you even more than you've let on here, then it really doesn't matter WHY you sometimes need 1.5 pills, nor does it matter if you're making it through your full work day without hurting too badly, only to break down and really, really hurt when you get home. The bottom line is this: You don't have to hurt that much. Read that again; heck, say it out loud a few times. YOU DON'T HAVE TO HURT THAT MUCH. Yes, in a semi-perfect world (won't say perfect world, because then AS wouldn't even exist!), either the anti-TNF drugs, or the disease-modifying drugs, or something else, would give you the excellent pain control your seeking. That isn't happening,. however, and I assume it won't be happening anytime soon because you haven't mentioned any other options on the horizon. That sucks, if it's true. But, if you don't have other options, then it sounds like you have reached the point where opioid pain meds are the best option you have to really, raelly control your pain, and not just once in a while.

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The only drug on the horizon right now is Simpnoi. The others have failed, or gave me bad side effects. I really wish the Arava would be an option, that one really helps but makes me get infections like nothing else! I can't be on it longer then a week without getting one.

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This is where that whole idea of the ER drugs being "stronger" than the short-acting meds comes back into play. Think of it this way: You've already overcome the biggest hurdle, which is to take opioid medicine in the first place. You jumped that one when you decided you needed vicodin to relieve your pain. Because you've done that already, making the decision now or in the near future to switch to the ER drugs is, honestly, a much, much smaller decision with fewer implications than the decision to use opioids in the first place. All you're doing now is deciding to take a different type fo the drug you're already taking, and have been for some time. That's because all of the bad things that can happen to you when taking an ER pain med, an happen to you while on vicodin. However, we've already shown that there are plenty of positives that an ER drug can bring to your pain treatment as opposed to short-acting meds.

I know it seems like a simple "re-covered" a lot of ground I talked about in my first post, and maybe I did, but everything in this post was born of my sense that you are still very afraid of the ER drugs when compared to the "safer" vicoding you're already taking. As I said, I could be totally wrong about that, and if I am, I apologize and you can ignore all this. In addition to that fear aspect, I think you have made it clear that you view all ER drugs as being "stronger" than the short-acting drugs. I tried to clear up that last misconception, but I'm not sure I did a good enough job. Taking one more crack at it, you should consider this all as a matter of dosage level. If you have a low-dose of an ER med, as I explained earlier, it really isn't stronger than the extra-strenth vicodin. If a low dose of the ER med is not enough to control your pain and you have to increase your dosage, yes, there is no denying that you would be taking a truly stronger pain reliever than the amount of vicodin you are taking now. However, look at that latter fact this way: Whereas you take 2, maybe 2.5 vicodin every day, back when I took it, I was taking at least 6 a day, sometimes 8 if I was up late enough. That was 2 in the morning, 2 in the afternoon when those wore off, 2 more before bed, and, if it was a late night at the poker table, once in a while 2 more before I called it a night. Now, my script only called for a max of 6 per day, so if I took 8 on any day, I would have to pick a day later in the month to only take 4.

When you hear that kind of vicodin dose, I think you can see how the amount of opioid I was getting from my daily dose was probably just as high as the first dose of oxy I started out at, which was 20mg twice a day. (Again, I'll check the actual comparisons later.) Thus, my switch to oxy didn't happen because my doctor thought I needed a "stronger" pain reliever, it happened becasue he wanted to get me off that much acetaminophen AND because he knew that if I was having that much pain, it would be much smarter to put me on a long-acting drug that would actually control my pain for 10-12 hours at a time. That way, I would no longer haveto go through the terrible cycle of 3-4 hours of pain control followed by 2-3 hours of bad pain that happened every day with my vicodin. In fact, I was really, really tired of that up and down cycle by the time I approached my doctor about taking a long-acting med, and when I did make the switch, it was like the clouds had been peeled away from my life and I could see the sun again. What a relief it was to take 1 or 2 pills in the morning before work and not think about my pain the rest of the day. Seriously, as soon as I started the oxy, I was SO much more comfortable at work that I was just stunned. One dose, and I suddenly had all-day pain control. I no longer had to remember to take pills to work with me (and man, I forgot ALL the time), no longer did I have to go through the ritual of crushing the vicodin and mixing it with pudding to take (they were too big for me to swallow easily), and no longer did I have to worry about getting caught in a four-hour meeting as my vicodin wore off (that sounds silly, but it *sucked*, trust me!). All of this came about not because of a huge increase in the amount of opioid pain reliever I was receiving, but rather because I was taking a more effective opiod for the type of pain I had.

I hope all that made sense--I'm kind of tired and I've really had a bad day and I'm hurting quite a bit tonight. While I have my COBRA back finally, my Remicade treatment isn't until Wednesday, and until then, yikes. Before today, I had 3 or 4 days in a row that were relatively good--I didn't need my mom or dad to come down then--but today I did have to break down and call my mom because I knew I couldn't take good care of myself on my own. Thus, if this post kind of drifted all over, was redundant, or otherwise didn't make sense, well, sorry about that! Just to reiterate my main points:

**Be honest with yourself and your pain doctor so the two of you can now work together to choose the best pain med for you.
**If I'm wrong and your current vicodin dose--with the occassional 1.5 dose he gave you permission to take--is doing a decent job for you, then his decision to leave things as are and not make the switch to an ER med is totally fine since you're not getting that dangerous dose of acetaminophen I was worried about.
**ER opioids, on their face, are not inherently "stronger" than the short-acting meds you are currently taking, they just use a different delivery method, one that will, in the long run, be more effective for you. Therefore, you can hum along to the tune of Blue Oyster cult's "Don't Fear the Reaper" and sing this with me, "Don't fear the ER! (Yeah, I know, that was awful--I'll hate myself in the morning and just blame it on my altered state!(

I think those are all the key points. And yeah, yeah, I can hear a few of you now: Dang it Brad, if those are the key points, why in THE he** did you have to ramble on for several thousand words to make those points? To which I reply: If I knew the answer to that, I'd probably annoy my friends and family a lot less often!

And so it goes . . . .

Brad

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Brad you are just an awesome asset to this board! Thank you so much. Taking so much time to so thoughtfully explain this to me helps more then you can know. Explaining that they're not stronger just a different release really helps.

I did ask about the tylenol and the dr said I can safely take up to 2 grams a day if needed, and long term is safer then taking it all at once. Meaning taking 4 grams a day one day is worse then taking 1 gram a day for a month straight. Kind of.

As of right now I am less scared to make the leap. But still will wait a bit. BUT I will ask for a higher dose next time. As it is I'm denying myself good pain control. Like today I took one pill, knowing I should take 1.5 instead. So as I write this I'm getting up and taking a little more. For the last tow days what I have been doing is in taking one pill, then 2.5 hours later taking the half, thinking it'll just make it last a little longer then if I took it all together. Well it's not working that way and I'm just being stubborn. If I do find myself needing more then I don't think the dr will have a problem upping my dose. Especially since this other drug he gave me to try didn't help but made things worse, and that I had to take a few doses of prednisone again.

I'm hoping that upping the dose will buy a little more time to see if I can get the simponi to work, if these both "fail" then I'll be talking to him about an ER drug. Which drug is closest to vicodin, I worry the oxy will make me jittery like the percocet did, is the patch better for that? He also mentioned morphine, is that ER, or is it short acting? I'll have to research all this.

I'm just not taking a high enough dose yet to feel the move is needed this month, or even next. But i do have to admit that I really hate that mellow ah yeah the pain is now down to a wonderful 4 then 3 hours later the pain is back feeling. It's a rollercoster, both physically and mentally. Being more steady would be nice. I also would love to not have nightmares about pain (the one dream I had someone was stabbing me in the back with a knife, I woke up to my thorasic spine just throbbing in pain,) or to wake up every morning in pain. It's a sucky way to start the day, stiffness I can deal with, but the pain from the last three weeks is a bit hard to get around.

Again thank you so much! I hope our long posts help others too, even if it helps a few even half as much as it's helped me!!


I'm really hoping your remicade helps. That whole insurance thing really stinks. I really hope they can figure something out that will change things like this from happening! And yes it all made perfect sense, maybe because we're both tired and two tired equal something that makes sense?