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Author Topic: How to make pain killers more effective  (Read 12952 times)
Deanne
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« on: March 20, 2015, 01:38:27 PM »

This probably doesn't belong here, but I'm not sure where to put it. I've been prescribed 20 tablets of oxycodone/Tylenol that I need to make last for about three weeks. To be reasonably comfortable, I need to take one at 9:00 pm and two at 1:00 am (about 60 tablets for three weeks). I tried taking one tablet at 9:00 and one at 1:00 am and it was ineffective, and now I'll be limited to just one at 1:00 am. Is there anything I can take with them to make each tablet more effective? I don't think one tablet at 1:00 am will even take the edge off and I don't know if it's worth taking it if there's nothing that will give it a performance boost.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Simon Dog
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« Reply #1 on: March 20, 2015, 02:32:39 PM »

Is there some reason your MD has prescribed painkillers at a level less than what you need?   Does (s)he think that you are using too many, staying on them too log, or just paranoid about being hassled by the DEA?
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Deanne
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« Reply #2 on: March 20, 2015, 03:04:36 PM »

I think because he's never seen me before / doesn't know me, so he gave me one tablet/night since I told him I only take them at night. It's the surgeon who'll remove my parathyroids. I had my initial consultation with him today and asked for oxycodone to help me get through until surgery. With the new restrictions on it, it's hard to get. I think it requires an in-person visit to the doctor to get a prescription. My neph is always very booked up and I make appointments with her months in advance and I don't have a primary care doctor. I've survived three weeks with nothing, so I guess if I have to do without, I'll make it, but nighttime has been very painful.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
MooseMom
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« Reply #3 on: March 20, 2015, 03:24:48 PM »

Why do you take painkillers only at night?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Michael Murphy
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« Reply #4 on: March 20, 2015, 03:28:49 PM »

One warning on dialysis the pills last longer.  The kidneys remove the drug and with reduced kidney function the effect of the pills last.  Just before starting dialysis I had rotator cuff surgery and was prescribed oxy I was out of it for a week.  I knew I was in trouble when I started talking to my iPad and it was answering.  It was not turned on at the time. Recently a patatientbarived at the dialysis center stoned to the gills.  Her doctor prescribed oxy and she was so bad she had her shoes on the wrong feet.  After dialysis she was fine. The nephroligist had her take a half a pill after every dialysis session.
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iolaire
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« Reply #5 on: March 20, 2015, 03:33:06 PM »

Is the idea that on three weeks you will no longer need them?  If so could you use more initially and taper of later as you feel better?
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Deanne
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« Reply #6 on: March 20, 2015, 04:21:23 PM »

I'm only in pain at night. With or without pain meds, it's a very consistent pattern:

With oxycodone, I take a tablet at 9pm and go to bed. I wake up at 1:00 to go to the bathroom and take two oxycodone tablets. As soon as I get back into bed, the pain level increases, but it's quickly knocked down and I can get back to sleep. It seems to have something to do with getting up during the night. I wake up at 3 am in more pain, but it's tolerable and although I'm aware of it in my sleep, I can still get back to sleep until 5 - 6 am when I can no longer ignore it and I get up for the day. I'm able to walk fairly normally, with just a slight shuffle, and the pain is mostly gone by 8 am.

Without oxycondone, I go to bed at 9:00 and the first twinges generally hit at about 11 pm. I can usually get back to sleep, but I'm aware of the pain in my sleep. At midnight the pain level starts to get increase and is harder to sleep through. Sometimes it's fairly intense by then. By 2 am, there's no hope of sleeping anymore. By 3 am, I'm torn between crying and screaming. I've tried to get up and walk it off, but that isn't effective and any movement seems to make it worse. I've thought about calling 911 or trying to drive to the emergency room. Instead, I just lay as still as possible on a heating pad and focus on trying to stay relaxed, watch TV, or listen to meditation recordings to try to distract myself from it. I give up at about 5 am and get up for the day. Then I can barely walk for another hour. I sort of shuffle around, hang onto walls, etc. The pain level finally starts to decrease at 8 am and I'm able to function normally at around lunchtime.

The rest of the day I'm fine. I have some muscle weakness, but I think that's a separate symptom of hypercalcemia that would be there with or without the pain at night.

I've been considering going floating (sensory deprivation float tank) during the night, but at $65/session, I can't do that very often. I might still consider booking a 2 am appointment to see what happens.

I haven't had a problem with my transplant clearing with the drug. No weird visions, voices, anything else. Maybe it would make me feel better to be stoned to the gills. But it's a good thought - Pot becomes legal here in July and I bet it wouldn't be difficult to find someone who makes brownies that I could try.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Deanne
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« Reply #7 on: March 20, 2015, 04:23:06 PM »

Is the idea that on three weeks you will no longer need them?  If so could you use more initially and taper of later as you feel better?

The idea is that I should have my parathyroids removed in about three weeks, and this is all caused by hypercalcemia, which is caused by hyperparathyroidism. I'm hoping as soon as my parathyroids are removed, this will all go away, like turning off a water faucet.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Deanne
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« Reply #8 on: March 20, 2015, 04:48:26 PM »

Thanks Michael!!! Your statement "stoned to the gills" made me think about "stoned" in general. I sent a text message to the friend who might know where to get brownies. She does know someone! I won't smoke anything. I know the potential for fungus in the lungs is a huge risk, but brownies..... I'm willing to try them.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
jeannea
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« Reply #9 on: March 20, 2015, 11:52:19 PM »

I see no reason not to call him back and saying you're still in terrible pain and need more help until the surgery. Tell his nurse the same thing you told us here. I believe you have to pick up a physical prescription but I don't think you need another appt.
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Charlie B53
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« Reply #10 on: March 21, 2015, 06:54:33 AM »


A few of the OTC name brands of acetaminophen have caffeine added to enhance the pain reduction.   Don't know how much.   Some people swear by it.

I know that I can drink a cup of coffee and go straight to bed.  The pain effectively cancels any 'alertness' from the coffee, I can get right to sleep.
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MooseMom
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« Reply #11 on: March 21, 2015, 08:20:00 AM »

Deanne, I wonder if it might be an idea to try taking just extra strength Tylenol on a 24 hour basis, following the dosage recommendations on the package.  Since it is for only three weeks, I see no harm in it.  The idea is to prevent the pain from taking hold.  This is the general idea in dealing with any pain; catch it before it catches you.  So maybe take your first dose in the afternoon, even if you are not in pain yet, and then take the next dose at 9 like you usually do, and so on.  It may be an experiment worth trying. 

I know that you may not have enough oxy to last you for three weeks if you were to try this, so that's why I suggest Tylenol.

This must be very frustrating for you.  I'm really sorry, and I hope the surgery will solve the problem.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Charlie B53
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« Reply #12 on: March 22, 2015, 03:38:52 PM »


I try not to buy name brands like Tylenol, opting for the most often cheaper acetaminophen in the 500MG tabs.

USED to be allowable 4000 units daily which I am still taking.  Two 500's every 6 hours.  Dr's have since REDUCED the daily intake setting the limit now at 3000.  Some people may have developed liver problems at the higher dose.

Be aware of your use.   If you are taking any of the traditional pain pills, check to be sure, many include acetaminophen and this should be figured into your daily intake so as NOT to exceed those limits.

It simply would do well in dialysis if you were to start damaging your liver.

Take Care,

Charlie B
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Deanne
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« Reply #13 on: March 23, 2015, 09:13:30 AM »

Thanks Jeannea - sometimes I miss the obvious about calling to ask for an additional prescription. I was making an assumption that he wouldn't allow any more, but then I didn't ask, either.

I tried your suggestion MooseMom - didn't work.

I'll keep an eye on the Tylenol dose, Charlie.

My friend with connections got a cookie to me yesterday with instructions to have a small nibble, wait 20 minutes, and then another small nibble if necessary and if my mouth got dry, I could know it was taking effect. I didn't notice anything after two small nibbles, but I stopped there anyway. I slept pretty well until 3 am, took only one oxycodone and then was able to go back to sleep until my normal time to get up. My joints ache this morning, but I feel much better than I have in about three weeks. Now to see if I have the same results tonight.

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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Charlie B53
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« Reply #14 on: March 23, 2015, 09:55:22 AM »


If that cookie recipe is similar to the brownies I used to make, it may work far better than most of the pills prescribed, and have less of the numbing side-effects of the pills.

I just finished ordering empty gelatin capsules that I plan to partially fill for my wife's eyes.  Diabetic and doesn't watch her sugars well enough.  Ocular pressure is too high, already had three lazer procedures to control bleeds.  Dr won't even consider removing her cataracts until she gets pressures under control.  I'm hoping these 'pills' will make a positive difference.  I don't need her to lose her eyesight.
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Deanne
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« Reply #15 on: March 24, 2015, 09:31:05 AM »

I'm convinced. I slept all the way through the night last night on only a small bite of a cookie. I also did some web surfing on the effects of edibles on kidney transplants to make sure I'm not doing anything to put myself at risk. From what I'm seeing, the opposite might be true. It looks like studies have been done that show it has immune suppressant and anti-inflammatory effects that might be beneficial to transplant recipients.

PDF file attached from http://download.springer.com/static/pdf/596/art%253A10.1007%252Fs11481-013-9485-1.pdf?auth66=1427214294_f8dd4f0cd75e6cdb06e3a77c2940a266&ext=.pdf


At the end of the abstract: "... these data support the potential of this class of compounds as useful therapies to prolong graft survival in transplant patients."
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
MooseMom
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« Reply #16 on: March 24, 2015, 10:45:36 AM »

Oh Deanne, I'm thrilled that you've found something that helps you!!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Charlie B53
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« Reply #17 on: March 24, 2015, 10:55:53 AM »


The link doesn't work for me, give some 'Error'.  I was curious to see when this information came about.

State and Fed government is so slow to admit that there ARE definate medical benefits from THC in it's various forms.   A simple plant that can assist with many afflictions.  And we are repeatedly told 'No' and treated like criminals simple trying to improve our healtlh.  Yet they, the Gov,  approve and allow al sorts of poisons to be used in our foods.

Doesn't make a lot of sense, does it?
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Deanne
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« Reply #18 on: March 24, 2015, 11:16:35 AM »

I attached the PDF file to my earlier post. It's divided into two pieces.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Jean
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« Reply #19 on: March 25, 2015, 12:44:03 AM »

Deanne, when my late husband was terminally ill with cancer he complained all the time about the pain. His Dr. said to try taking 2 Excedrin exactly between the times you were taking, well, he was taking Dilaudid and it did seem to help him. Kind of like a booster thing I think. But on the other hand, if pot helps you, I say go for it.
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One day at a time, thats all I can do.
Deanne
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« Reply #20 on: March 30, 2015, 06:45:18 PM »

Still no end in sight. My vitamin D level came in high last week and my neph said that because of it, she isn't convinced now that removing my parathyroids will fix anything. Yesterday she called to tell me she wants me to see an endocrinologist. Then today, I had labs run and my calcium dropped below 11, but my PTH went over 200, even though she doubled my dose of Sensipar. My PTH was 140 two weeks ago.

My joints hurt now, I've lost enough muscle mass that it's hard to walk more than a mile or two, and I've been having a lot of stomach upsets and some vomiting.

She called tonight and she just doesn't know and she's going to send me to the transplant clinic instead of to the endocrinologist.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
jeannea
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« Reply #21 on: March 30, 2015, 09:14:37 PM »

This all sounds awful. How soon can you get in at transplant clinic? I would call the coordinator ahead of time and make sure there were lots of rule out tests on the blood test list for that day. Thyroid, PTH, liver function, all your usual kidney function, probably a urine creatinine and protein, whatever else they like. I hate getting 8 or 10 tubes drawn as much as anyone but I hate extra sticks too.

You must be miserable. Make sure they know it. You need help.
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MooseMom
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« Reply #22 on: March 31, 2015, 10:31:20 AM »

How very frustrating for you. I hope you can get to the tx clinic very soon.  I'm just baffled. 

So, your muscles AND your joints are now causing you pain?  Is that right?  Has the overall intensity of your pain decreased at all?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Deanne
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« Reply #23 on: March 31, 2015, 12:37:39 PM »

My muscles don't hurt. I think they're just gone, or at least don't want to work with me right now. The joint pain is new. I tried going to bed without any kind of pain killer last night and I didn't wake up screaming in pain during the night - huge relief! I had trouble sleeping, but maybe I was just getting too used to the pain killers knocking me out for the night. Some things are better, others are worse or new. There might be more better than worse - yay! Maybe I'm slowly getting better overall.

I don't like the mysteries much though. Why did my PTH rise after Sensipar was increased? To me, this says even more that my parathyroids need to go. Why is my Vitamin D level high? That might be why my calcium level spiked. A web search shows the only reason for Vitamin D to spike is an overdose of supplements, but I don't take supplements for it. I drank Ensure and Glucerna for breakfast when I had a cold, but I checked the labels and they don't have a huge level of either calcium or Vitamin D. The multivitamin I use has 200% of Vitamin D in it, but I forget to take them more often than I remember, and comparing that amount to stand-alone Vitamin D supplements, the amount in the multivitamin isn't extreme. The Vitamin D level is what made my neph put a hold on removing my parathyroids and send me back to the transplant center to look for answers.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
MooseMom
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« Reply #24 on: March 31, 2015, 03:09:52 PM »

I LOVE a good mystery, but not this one.

I'm glad you are posting all of the "evidence" as I am so curious to know WTF is going on!  I'm ready to get to the end of this book, though!!!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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