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Old 08-13-2008, 10:52 AM   #1
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As a Cper How much medication........

How does one know that they are receiving the proper amount of medication? For example: right now I am feeling amazing relief but I still feel the pain. I am not screaming in pain like I was or biting my lip. I suspect one still wants to feel the pain because it would be easy to overdo and hurt yourself if you did not feel the pain.

Is it acceptable to stay like at a 4/5? Where do normal cpers sit on the pain scale? This is all new to me because I am used to sitting at a 8/9/10 most days. Right now I am at 4/5/6/7/8. Does this makes sense? If not, I will try and reprhase my question.

 
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Old 08-13-2008, 11:07 AM   #2
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Re: As a Cper How much medication........

My PM docs goal is for me to be around a 2-3 and functional. Granted, this is a VERY lofty goal, but it has given me some sense of perspective. When I first started PM and finally got my pain from averaging 8-9 down to 5, I felt like I should not ask for anything else. Getting enrolled in a study has completely changed my mind on this.

I am currently receiving Neurontin through a Medtronic pain pump into my spine as part of an investigational study. When they got my pain down to a 4, I decided it was time to wean off my meds. They told me that they wanted my pain at a 1-2 before I weaned off my meds!!!! It has given me great hope!

 
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Old 08-13-2008, 12:55 PM   #3
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Re: As a Cper How much medication........

Wow TexMom, I had no idea they could give this medicine thru a pump. Is this method new to the market? How exciting that it has given you such relief. What a blessing! Congratulations and I pray that this continues to work for you long term. Unfortunately, I am deathly allergic to neurotin but I wonder if they give some of the other nerve medications via this method. Hmm....

Again Congrats.

 
Old 08-13-2008, 04:15 PM   #4
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Re: As a Cper How much medication........

Honestly your question is a trick question in one sense. The goal of pain management by most doctors and standards is a 50% reduction, some doctors may try for as high as 80% but this can often times lead to being over medication and your level of tolerance will increase dramatically. Considering where you are now your change is very significant.

The other part of it would be what is your current regimine, your condition and your age. If you are being managed by short acting medications then it's time for long acting. If already on long acting but on low doses there may be a chance the doctor might be willing to increase your dosage some.

The goal of pain management is not 100% relief. With that said, we also need to make adjustments in our own personal lifestyles. For example if you are out running marathons for your hobby (doubt you do ) then thats something you might have to give up to have a better quality of life. It's hard for individuals to give up things we enjoy but cause us pain but it's almost a whole part of the big scheme of things.

Incorporating non medicinal techniques is also just as important such as bio feedback, massage therapy etc.

Pumps should be limited to individuals who have tried all other forms of medication and have had little to no success at high dosage (i.e. fentanyl patches 100 + mcg every 48 hours or less). Pumps are for life, they must always be kept filled and if you no longer need it, they must be surgically removed.

If you look on the regular PM board and search for the pump you'll find a vast amount of information regarding what used to be the traditional requirements and still should be but at a 20 grand check to the doctor some give them out more freely. It seems last year many were looking to get a pump who never had been on long acting medications.

The biggest problem with the pump is so few doctors are authorized to use it that if you have one and he or she moves you have to find a new doctor actually willing to take care of you. There have been some really sad threads in the other forum regarding this.

As for what's normal? Everyone is just as different as the scale they use to rate their pain. I've had CP for 32 years now, my average level is a 4 or 5. I have had it even lower but in doing so I was severely over medicated and totally dysfunctional which was not acceptable to me at all.

Good luck, I hope you find the answers you seek or at least a happy medium!
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Old 08-13-2008, 05:31 PM   #5
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Re: As a Cper How much medication........

My pain is not well managed yet, but I am shooting for a 4-5 at the worst time of day, and a 2-3 during the good parts of the day. I, too, have been operating at a 8/9 for some time, and it is weird when your pain gets down to a 5. I am still trying to figure out the right dose of my LA medication, but I am hoping that I will only need to take that and Tramadol daily, and then only use my BT meds (Vicodin) for bad days. I usually take my BT when I am at an 8. I was wondering at what point do others take their BT meds? I know everyone's rating system is different, but it would be interesting to know.

 
Old 08-13-2008, 07:12 PM   #6
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Re: As a Cper How much medication........

Hi Pepper,

Well, for me, I average around a 3-4. Of course, I can easily spike up to a 10 when my kidney flares up and I start passing either a stone or blood clots. I can easily pass up to 4 stones per week. Anyway, I'm happy with my 3-4 average. I will never get below that.

We were hopeful when I had my left kidney removed (2 years ago), my pain would fall below the 3-4, but not so. Now, as most of you know, my only kidney is starting to fail, so I assume my pain average will get increasingly higher as the function gets lower.

I'm grateful just to be at the 3-4 average. I know most people are not that lucky. For many years, 21 to be exact, I lived daily at a 9-10 level. Then, I entered PM and have been there the last 7 1/2 years. So, I understand what it's like to live at that level. I consider myself very fortunate to have the caring PM doc that I have. Bye for now!!

Shay

 
Old 08-13-2008, 08:49 PM   #7
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Re: As a Cper How much medication........

Hey Pepp...This is a tough one! Everyone is different, as you know. Because everyone's pain is different, and some pain doesn't respond well, it just depends. For example, my pain is very bad. I don't complain about it because I've learned it doesn't do any good and I function best if I can focus on other things. I rarely dip below a 7, and hover between 7 and 8 most of the time. When it gets real bad and makes me bed ridden, it's a 8.5 or 9. I don't think I've ever had a 10.

I'm on some pretty heavy stuff....I feel quite sure I could get it down to a 5-6, but it would require so much med, that I would be sedated....My Doc and I have experimented and I don't feel that it is functional. Plus, it would establish a new "set point" and then eventually require even more meds.

So, to answer your question, I think it just depends on one's individual situation, and pain scale. I know that's probably not the answer you wanted, but it's the best way I can answer the question. I think everyone has to establish a pain level they can live with and go from there.

Take care,

Ex

 
Old 08-13-2008, 10:35 PM   #8
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Re: As a Cper How much medication........

Pepper darlin', I have to agree with Ex. I also have pretty bad pain and it would take enough meds that I wouldn't be able to function, to get my pain levels down below a 5 or 6. Actually, I can't really remember when I felt anything lower. My PM and I discussed this at my first appointment. He asked me, flat out, what I could live with. And when I said 5, he agreed that this was a reasonable expectation for me to have.

I try to look at it as a "wants" and "needs" type of scenario. I consider my "needs" to be the things I do for my home and family. Like prepare a few meals a week, keep my house relatively clean (with help from hubby) and get some very light, very low impact exercise. I still have pain, but it's tolerable.

As for the "wants", I choose very carefully and plan everything as much as possible ahead of time. Like hosting Thanksgiving dinner for 25 or 30 of my family members. Hubby always takes the week off, and I start getting as much done ahead of time as I can. I also have others bring some of the sides, etc. and everyone helps with the clean-up. I pay for it for at least the next week or two, but I love to do it, so I accept the payback.

I don't know if this answers your question, but it's the best way I could think of to describe how I live with my pain. As Ex said, it really depends on the person and their tolerance. I certainly don't want to live in agony, but I don't want to be comatose, either. I guess "happy medium" would be the best definition. Good question Pepp. I hope some of what I said was helpful. Many hugs, and congrats on the newfound relief! It's about time! CMP/MM

 
Old 08-14-2008, 01:42 PM   #9
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Re: As a Cper How much medication........

I got terribly spoiled at one point - I was at a 0-2 for a year and I have to admit that I want this back - I had no bad side effects other than the constipation when my pain was at this level. I am now much higher - I have to be able to work - my pain is usually neck and headache pain. I find I have trouble concentrating and thinking sharply if my neck pain and headaches go much above a 4. I don't know what to do about this since my work requires ??complex thinking/writing. If I can't focus/concentrate, I'm in trouble. I have to say that I would like to get back to a 1-2. I know many have posted that the side effects get to be too much at certain doses. I haven't found that to be the case for me [but my tolerance is high, too high and seems to jump very quickly - once I've gone up, it's very hard for me to go down - my body seems to adjust so quickly [in the up direction only however, it doesn't seem to adjust very quickly going down].

I'm not sure why docs and patients feel 50% if sufficient. I think the main concern is respiratory problems. Pain usually (almost always??) prevents respiratory problems and docs feel safer if a patient is in pain. Some studies have suggested that drs. worry way too much about respiration issues w/ chronic pain patients. I can understand the concern however - if you die from respiratory failure, the dr. is held responsible.

Personally, I think the goal should be to get it down to 1-3. I *do* worry, however, that having pain at a low level may encourage me to do things I really shouldn't and that I could wind up doing more damage to my neck in the long run if pain levels are masked. However, chronic pain - if I understand correctly, often reflects a problem w/ the pain signals going to the brain. There is a often a malfunction in the pain signaling process. I wish I understood this better. I would talk to your PM about what she thinks is a realistic goal. Personally, I think that shooting for 2-3 is reasonable but I don't feel like I know enough to back up my assertion!

There is also the worry about needing ever increasing doses to handle pain as tolerance occurs over time. Doctors don't want to get you on so high a dose that they don't have anything left to treat the pain [except a pump].

Last edited by Confused089; 08-14-2008 at 01:44 PM.

 
Old 08-14-2008, 03:43 PM   #10
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Re: As a Cper How much medication........

Pepper,

This is highly individual and it cannot be determined by comparing to other CP sufferers.

Therapy with medication is pretty much the same regardless of the condition. The goal is always to get the most benefit with the least amount of undesirable side effects, using as little medication as possible. That's the working formula across the board. Oftentimes we focus on the amount of meds we take, or the amount needed to get reasonable relief. But the focus should be on the pain, not the amount of meds. No one should have to suffer with intractable pain, not when modern medicine has so many tools at its disposal. And that's the motive behind PM and Palliative Care.

If it were possible to completely remove all the pain and not suffer from undesirable side effects, that would/should be the goal. For most that's not possible, as these are potent medications. But we should be careful to remember that there is more in the way of pain killing medications in the world than there is pain. So what should we do? IMHO, we should start low and slow. Once a med is found that is tolerated, and works to some degree, then we titrate. The process is simple. We titrate upwards until either the pain is relieved or the side effects become intolerable. The lowest dose which relieves the pain, with the least side effects is the dose we settle on. So what if takes 500mg of morphine to control my pain. If it works and I can tolerate it, and don't suffer intolerable side effects, then who has a problem with that? And what about the next guy who's in the hospital on 2,000mg of oxycodone daily to control his cancer pain? If it works and he can tolerate it then who has a right to object?

If pain can be removed, that's absolutely wonderful. And if a person can achieve such a state with tolerable side effects, then you have success. The nature of these meds and their side effects usually precludes removing all the pain. So we get as close as we can. This is how the "good docs" work. Unfortunately, many docs are opiophobics, and cannot see past the number of milligrams to the actual pain being suffered. This is so unfortunate.

Pure opioid agonists have no ceiling, and neither should the docs that treat pain professionally. There is no perfect dose. There is no dose that's too high - that applies to everyone. But there is a dose that's too low - and that dose is one that leaves the sufferer in severe pain when higher doses are available and would not cause intolerable side effects.

What's too high for you may not even touch my pain. And vice versa. Comparing one's pain and one's dose to another is a useless exercise. It's meaningless. Some folks require very high doses of BP meds to prevent stroke, while others can get by with the lowest available dose to achieve the same outcome. Some require high doses of injectable insulin to control blood sugar, while others can do it with diet. And some folks require seemingly astronomical doses of opioids to get decent relief, while others can use four Vicodin a day to get to the same place.

It's all relative. And it's my hope that as we move forward more and more docs will learn under the teaching of physicians like yours Pepper, and like mine. I hope that opiophobes become the exception, the rare exception. Of course I'm not talking about handing out narcotics like candy - I'm talking about legitimate patients and legitimate docs working aggressively to treat severe, chronic pain in order that people can live fulfilled, meaningful lives. I firmly believe that this is possible, if we reject fear and embrace compassion and science in the pursuit of lives that are productive and joyful.

steve

 
Old 08-14-2008, 09:11 PM   #11
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Re: As a Cper How much medication........

Thank you everyone. This really helps me. I am thinking if I can keep it consistently or pretty near 4/5. I would be thrilled. I think it is really important that I can feel the pain still because it will serve as a reminder to this type A individual not to overdo. To me being a 4/5 is a miracle.

 
Old 08-14-2008, 09:26 PM   #12
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Re: As a Cper How much medication........

The other thing you have to keep in mind Pepp is that you always need to "reserve" somewhere to go....i.e. higher doses will eventually be needed to keep you out of the high ranges. Therefore, the higher you go now, the higher you'll need to go later as a result. It's a trade off....That's for sure. If it weren't for "tolerance", it wouldn't be an issue. But as we all know, that's not the case.

Take care, and I'm really happy for you.

Regards,

Ex

 
Old 08-14-2008, 10:36 PM   #13
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Re: As a Cper How much medication........

Quote:
Originally Posted by 123dietdrpepper View Post
Thank you everyone. This really helps me. I am thinking if I can keep it consistently or pretty near 4/5. I would be thrilled. I think it is really important that I can feel the pain still because it will serve as a reminder to this type A individual not to overdo. To me being a 4/5 is a miracle.
I would go for a lower level [I posted something short to this effect on your other thread].There might be other ways to restrain yourself from type A behavior :-). I think that there are costs and benefits of going up and of lower pain levels. For example, I read an article today that discussed the effects of long term pain med use on hormones and immune system depression - the research showed that these effects were usually dose dependent. And tolerance, as Ex, discussed is an issue. I really wouldn't worry about this now. You're not at a super high dose at this point [even w/ the increase], and you could wind up staying at a dose that leaves you with 0-2 pain for a while. You won't know until you try it. Sometimes a small increase can make a big difference.

Why not try to get as much of your life back as possible now? If you really want to weed ;-), then that's a benefit from going up! As I mentioned in my other post, it might be harder to go up later. It's a personal decision, and one you have to work out with your doctor. But, I think there are few reasons to stay in pain - you might mention your concern about overdoing it to the PM and see what she thinks. She sounds easy to talk to. . . . It is almost as if chronic pain patients forget that it's ok not to have a lot or any pain sometimes...it has become such a big part of one's life that it's hard to imagine living life w/o much pain.

I imagine your views will shift with time as well. A 4 or 5 must seem like heaven now. For me, a 5 is hard to handle (my definition may be different than yours however) after being lower on the scale [which I suppose might be a reason not to get to a 1 or 2, but life is short...why endure more pain than necessary?

Last edited by Confused089; 08-14-2008 at 10:40 PM.

 
Old 08-15-2008, 10:59 AM   #14
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Re: As a Cper How much medication........

Wow! I just have to say wow to Steve's post. I wanted to quote it but the whole thing was well stated and to the point. I agree that everyone is different and that our definition of a '5' may be different too. My doc is very flexible about dosing and such but I've apparently reached my limit(I should say 'her' limit) in terms of milligrams. The last time my meds were increased she mentioned that another girl had reached the same level as mine and was taken completely off of her meds because of hyperalgesia. This terrifies me. I am sooooo grateful to get the treament I do get but it's frustrating when doctors look at numbers and do not thing about how different everyone is.

I wish I could go to Steve's doc....trials and all. She(it is a she, isn't it? Forgive me if I'm wrong) sounds just wonderful. I shouldn't be bad mouthing my doc when I'm trying to get my bt meds filled early because I want to go on one more trip before school starts. Bad karma!!

Pepper, again I am glad that you are finally dropping to a lower number and hope tolerance does not rear it's ugly head for you for a long, long time.
Take care, Mush
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