It wasn't an easy thing to go through alone. Actually, I was a member here and relied on the support of friends here. This place has been a Godsend in more than one way!
I did a lot of research and found one article that provided a description of titrating down. Length of time was dependent on dose and willingness to experience a degree of withdrawal. Another article recommended the use of Calcium, Magnesium and Potassium supplements to control the severe restless leg syndrome. I had a horrible time with insomnia. I had one stretch of time when I didn't sleep for 4 days, at all. I couldn't lay down because that's when my lower extremities felt like I had ants crawling inside me! If I sat up or stood up, I got some relief. The supplements did make a difference.
I reduced by a milligram per day until I halved the dose, then 1/2mg daily to 20, then 1/4mg to 10, then I stayed there for a week or two and started shaving them down in strength until one day I quit. It took a some months to accomplish. I was fortunate to have rat holed a supply for the zombie apocalypse and that's what got me through. I still had (have) some very unpleasant days. Now I just dream of what pain control used to feel like and spend many days with limited activity because relief is gone. (I do not recommend this to anyone)
This opioid war has hurt legitimate chronic pain sufferers in a very substantial way. You're right, we are the low hanging fruit. By denying us access, made the decline of opioid consumption and prescription records inaccurately appear successful. In the meantime the illicit, homemade garbage keeps crossing the border or getting cooked up in a kitchen somewhere. Desperate times for many people...
Now, back to renal function!
Yes, Yes and Yes.
If I neglect to take my meds, I can get Really Crampy Legs, like excruciating "In the knee" muscle spasms. I have halved my normal dose over the past year, mostly because my pain levels are not too bad on that half, and because I think in reality, I don't want to be dependent on any drug, especially ones where Customs Officials in foreign countries give you the raised eyebrow. Never had anything seized or anything, but the thought of a sudden complete detox from methadone would be profoundly painful. A real downer for a vacation...
It seems like every decade or so the pendulum sways toward the Jess Sessions approach to pain management. Inflict more pain on people who are pain.
So, renal function...I am pissing like a racehorse all day with the gallon of water regimen. I am trying to front load the bulk of my intake to early in the day, though, since I have the bladder capacity of a rat terrier. That includes about 4 cups of Peet's French Roast in various fashions, Drip, Press, Expressso, pretty much in that order.
Sides are still manageable although I am finding the threat of a Nuclear Holocaust to be an annoying companion to the Edginess of Epclusa...
Tig said
Aug 3, 2017
It wasn't an easy thing to go through alone. Actually, I was a member here and relied on the support of friends here. This place has been a Godsend in more than one way!
I did a lot of research and found one article that provided a description of titrating down. Length of time was dependent on dose and willingness to experience a degree of withdrawal. Another article recommended the use of Calcium, Magnesium and Potassium supplements to control the severe restless leg syndrome. I had a horrible time with insomnia. I had one stretch of time when I didn't sleep for 4 days, at all. I couldn't lay down because that's when my lower extremities felt like I had ants crawling inside me! If I sat up or stood up, I got some relief. The supplements did make a difference.
I reduced by a milligram per day until I halved the dose, then 1/2mg daily to 20, then 1/4mg to 10, then I stayed there for a week or two and started shaving them down in strength until one day I quit. It took a some months to accomplish. I was fortunate to have rat holed a supply for the zombie apocalypse and that's what got me through. I still had (have) some very unpleasant days. Now I just dream of what pain control used to feel like and spend many days with limited activity because relief is gone. (I do not recommend this to anyone)
This opioid war has hurt legitimate chronic pain sufferers in a very substantial way. You're right, we are the low hanging fruit. By denying us access, made the decline of opioid consumption and prescription records inaccurately appear successful. In the meantime the illicit, homemade garbage keeps crossing the border or getting cooked up in a kitchen somewhere. Desperate times for many people...
Now, back to renal function!
LamontCranston said
Aug 3, 2017
Sorry it took so long to reply, but Detox on your own, from 80mg of methadone? Oh man. Methadone is cheap, though, if you can find a doctor to treat you with it. It literally saved my life, sort of. I was a trainwreck of pain in the year I developed MS and basically my days ended at 1030 AM. I'd crawl in to bed, and be grateful for the global fatigue that would pull me in to sleep pretty much for about 18 hours every day.
fast forward through all the usual BS to where I got in front of a knowledgable anesthesiologist......who gave me 100 5 mg tablets of methadone and a thorough explanation of titration as well as the dangers of an opioid naive person dying from respiratory failure. I went off to find my own level, with some detailed advice on how to proceed.
I immediately found relief at 30 a day, in 3 equal 10 mg doses. 6 years later I titrated to 60mg a day, and now I am taking 30-60 depending on the general level of pain I am at. No rescue meds since 2010 either.
I went back to work after 2 years of retraining for a different line of work. I got a job that I liked, stayed 11 years and well, I couldn't have asked for more.
But detox on short notice, on your own? NO Way. That is should be against the law. I estimate that to "comfortably" detox from 60mg it would require at least 18 months. And that last bit is said to be dreadful.
I have noticed that my GP has never been 100% happy after inheriting my pain treatment. I was under the care of my HMOs "Chronic Pain Clinic" for the first 5 years or so then kicked back to my GP. We had a conversation about her "personal views" on pain meds etc. and she seemed fairly neutral, not enthusiastic, but not opposed to the idea of long term opioid treatment. Now I am sensing there is some pressure coming from the HMO, probably due to the DEA or something. In fact, after 10 years of methadone at a stable dose with NO issues or drama, they asked me to sign a Opioid Contract that looked like Jeff Sessions himself wrote it. "I promise this..." and then they started screening me for other recreational drugs on an annual basis. Not randomly, though, but every February. Kind of stupid since I could go on a street drug binge for 10.5 months a year, clean up and do a clean piss test. Silly HMO. Worse DEA. And it will get Way Worse with Sessions as AG, he is a Huge Reefer Madness whack job, and now is the boss of DEA in practice. God help those not protected by a massive HMO.
Right now I do 20 mg when I get up, then 10 mg around 5, plenty of pain control.
It is No Surprise that people start self medicating with black market drugs if they are in pain, and no one will treat them. Anyone who has lived with high pain levels for long stretches gets to the point where they either find a solution, or end it all. I have never understood why even doctors find that the most tolerable pain, is Your Pain, and when push comes to shove they opt for the easiest way out. Doctors in private practice have malpractice liabilities to contend and HMO doctors have policy guidelines to contend with, but the seesaw policy we see here in the states only hurts people who are Already In pain, not the people they say are abusing the drugs for fun. It's like killing all the cats in the country because 1 of them did something naughty. As if the people who suffer in pain are the problem, not the people who obtain prescription drugs on the black market and accidentally overdose. With Sessions, I can see it's all about going after the low hanging fruit, legitimate pain patients....
-- Edited by LamontCranston on Thursday 3rd of August 2017 12:07:27 PM
Tig said
Jul 26, 2017
Ah-sooo, that's probably one of the big reasons for your potassium fluctuation. Anytime you start trying to control things with other medications, it's likely to cause other undesired effects. I was taking HCTZ and gout meds (back when I was drinking) and those two really didn't like each other and caused some levels to go haywire. My GP even listed it on my record as an allergy when combined! Never quite figured that reasoning, but whatever, I don't take either anymore.
I took pain meds for years and years, my last being 80 mg/day of Methadone for a cervical spine injury and repair that stabilized everything but the pain. I lost my docs and insurance during the changeover to the ACA, so I had to detox on my own. There were no doctors willing to take on this broken body with the plan I have. Needless to say, I hurt, a lot... They put me on that during treatment because it doesn't have any interactions with most treatment drugs. It's a good pain killer, too. Cheap as well. The previous meds OxyC and Fentanyl were high dollar and I couldn't get approval for them any longer. What a tangled web of medication.... It's nice not having to rely on them, but I did feel so much better when I didn't hurt all the time. I know others that resorted to street drugs when they lost their insurance. I feel badly about that, seems to be pattern developing around the country like that. We have a community nearby called the Villages, primarily old farts like us (respectable of course) but they too, have a high incidence of street drug use and surprise STD's! I guess people never cease looking for comfort, in whatever form!
Urinary loss. Certain medications can cause excess potassium loss in the urine. Blood pressure medications such as loop diuretics (e.g. furosemide) and thiazide diuretics (e.g. hydrochlorothiazide) commonly cause hypokalemia. ... A low level of magnesium in the blood can also cause hypokalemia.
LamontCranston said
Jul 26, 2017
Tig wrote:
I'm curious what your anti inflammatory drug use might be? Do you regularly use Ibuprofen or other Nsaids? Are you a fitness junkie by chance? Not normal exercise, but frequent and extreme. Does your diet and fluid intake allow for proper electrolyte replacement? These are just questions that come to mind. My wife had similar complaints with these same issues and we found some resolution by stopping some of her habits.
I don't use NSAIDs at all, other than the very occasional Norco as a rescue med. I take 30-60mg daily of methadone to head off MS-Related cervical-spinal-headaches, 2 blood pressure meds, hydroclorothiazide and lisinopril, tamsulosin (helps old men pee drug) I walk at least one mile everyday, but less than 5, but no longer lift weights or do extreme exercise. I am probably guilty of not drinking enough water some days, but most days I drink 3 16oz (48oz) glasses a day, 4-6 cups of coffee and 12oz of Green tea after dinner.
My suspicion is that those BP drugs are the culprit, hydrothiazide with lisonopril works as a diuretic. Still when those creatinine #s fluctuate a lot, even though I am fairly consistent in water intake, it makes me wonder.
I wish I could be a fitness junkie, though, before MS I ran 5-6 miles every morning before work, did some moderate lifting.
-- Edited by LamontCranston on Wednesday 26th of July 2017 12:55:55 PM
-- Edited by LamontCranston on Wednesday 26th of July 2017 12:57:59 PM
Tig said
Jul 26, 2017
I'm curious what your anti inflammatory drug use might be? Do you regularly use Ibuprofen or other Nsaids? Are you a fitness junkie by chance? Not normal exercise, but frequent and extreme. Does your diet and fluid intake allow for proper electrolyte replacement? These are just questions that come to mind. My wife had similar complaints with these same issues and we found some resolution by stopping some of her habits.
LamontCranston said
Jul 26, 2017
My kidney function has been "all over the place" at least in terms of Creatinine and Potassium for a couple of years, several times my lab results have strayed outside of normal ranges. There seems to be some relationship to various types of kidney malfunction and disease, and of course infection via dialysis via contamination.
There are a few very "medical" studies on this and a few papers published here and there. In this one, there are a lot of mentions that there are issues with HCV and kidney disease/malfunction. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3533219/
I've asked my gastro to monitor kidney function as part of the routine labs I'll be doing during treatment, and of course I am sure that guzzling a gallon of water daily will help keep my kidneys busy and hopefully I'll see some better results as it progresses.
I am curious, too, if anyone here has some kidney wisdom to share with us, or knows of a resource with that type of info. This article, posted by Tig mentions HCV-Kidney related manifestations and has some good basic info, by the way
Yes, Yes and Yes.
If I neglect to take my meds, I can get Really Crampy Legs, like excruciating "In the knee" muscle spasms. I have halved my normal dose over the past year, mostly because my pain levels are not too bad on that half, and because I think in reality, I don't want to be dependent on any drug, especially ones where Customs Officials in foreign countries give you the raised eyebrow. Never had anything seized or anything, but the thought of a sudden complete detox from methadone would be profoundly painful. A real downer for a vacation...
It seems like every decade or so the pendulum sways toward the Jess Sessions approach to pain management. Inflict more pain on people who are pain.
So, renal function...I am pissing like a racehorse all day with the gallon of water regimen. I am trying to front load the bulk of my intake to early in the day, though, since I have the bladder capacity of a rat terrier. That includes about 4 cups of Peet's French Roast in various fashions, Drip, Press, Expressso, pretty much in that order.
Sides are still manageable although I am finding the threat of a Nuclear Holocaust to be an annoying companion to the Edginess of Epclusa...
It wasn't an easy thing to go through alone. Actually, I was a member here and relied on the support of friends here. This place has been a Godsend in more than one way!
I did a lot of research and found one article that provided a description of titrating down. Length of time was dependent on dose and willingness to experience a degree of withdrawal. Another article recommended the use of Calcium, Magnesium and Potassium supplements to control the severe restless leg syndrome. I had a horrible time with insomnia. I had one stretch of time when I didn't sleep for 4 days, at all. I couldn't lay down because that's when my lower extremities felt like I had ants crawling inside me! If I sat up or stood up, I got some relief. The supplements did make a difference.
I reduced by a milligram per day until I halved the dose, then 1/2mg daily to 20, then 1/4mg to 10, then I stayed there for a week or two and started shaving them down in strength until one day I quit. It took a some months to accomplish. I was fortunate to have rat holed a supply for the zombie apocalypse and that's what got me through. I still had (have) some very unpleasant days. Now I just dream of what pain control used to feel like and spend many days with limited activity because relief is gone. (I do not recommend this to anyone)
This opioid war has hurt legitimate chronic pain sufferers in a very substantial way. You're right, we are the low hanging fruit. By denying us access, made the decline of opioid consumption and prescription records inaccurately appear successful. In the meantime the illicit, homemade garbage keeps crossing the border or getting cooked up in a kitchen somewhere. Desperate times for many people...
Now, back to renal function!
Sorry it took so long to reply, but Detox on your own, from 80mg of methadone? Oh man. Methadone is cheap, though, if you can find a doctor to treat you with it. It literally saved my life, sort of. I was a trainwreck of pain in the year I developed MS and basically my days ended at 1030 AM. I'd crawl in to bed, and be grateful for the global fatigue that would pull me in to sleep pretty much for about 18 hours every day.
fast forward through all the usual BS to where I got in front of a knowledgable anesthesiologist......who gave me 100 5 mg tablets of methadone and a thorough explanation of titration as well as the dangers of an opioid naive person dying from respiratory failure. I went off to find my own level, with some detailed advice on how to proceed.
I immediately found relief at 30 a day, in 3 equal 10 mg doses. 6 years later I titrated to 60mg a day, and now I am taking 30-60 depending on the general level of pain I am at. No rescue meds since 2010 either.
I went back to work after 2 years of retraining for a different line of work. I got a job that I liked, stayed 11 years and well, I couldn't have asked for more.
But detox on short notice, on your own? NO Way. That is should be against the law. I estimate that to "comfortably" detox from 60mg it would require at least 18 months. And that last bit is said to be dreadful.
I have noticed that my GP has never been 100% happy after inheriting my pain treatment. I was under the care of my HMOs "Chronic Pain Clinic" for the first 5 years or so then kicked back to my GP. We had a conversation about her "personal views" on pain meds etc. and she seemed fairly neutral, not enthusiastic, but not opposed to the idea of long term opioid treatment. Now I am sensing there is some pressure coming from the HMO, probably due to the DEA or something. In fact, after 10 years of methadone at a stable dose with NO issues or drama, they asked me to sign a Opioid Contract that looked like Jeff Sessions himself wrote it. "I promise this..." and then they started screening me for other recreational drugs on an annual basis. Not randomly, though, but every February. Kind of stupid since I could go on a street drug binge for 10.5 months a year, clean up and do a clean piss test. Silly HMO. Worse DEA. And it will get Way Worse with Sessions as AG, he is a Huge Reefer Madness whack job, and now is the boss of DEA in practice. God help those not protected by a massive HMO.
Right now I do 20 mg when I get up, then 10 mg around 5, plenty of pain control.
It is No Surprise that people start self medicating with black market drugs if they are in pain, and no one will treat them. Anyone who has lived with high pain levels for long stretches gets to the point where they either find a solution, or end it all. I have never understood why even doctors find that the most tolerable pain, is Your Pain, and when push comes to shove they opt for the easiest way out. Doctors in private practice have malpractice liabilities to contend and HMO doctors have policy guidelines to contend with, but the seesaw policy we see here in the states only hurts people who are Already In pain, not the people they say are abusing the drugs for fun. It's like killing all the cats in the country because 1 of them did something naughty. As if the people who suffer in pain are the problem, not the people who obtain prescription drugs on the black market and accidentally overdose. With Sessions, I can see it's all about going after the low hanging fruit, legitimate pain patients....
-- Edited by LamontCranston on Thursday 3rd of August 2017 12:07:27 PM
Ah-sooo, that's probably one of the big reasons for your potassium fluctuation. Anytime you start trying to control things with other medications, it's likely to cause other undesired effects. I was taking HCTZ and gout meds (back when I was drinking) and those two really didn't like each other and caused some levels to go haywire. My GP even listed it on my record as an allergy when combined! Never quite figured that reasoning, but whatever, I don't take either anymore.
I took pain meds for years and years, my last being 80 mg/day of Methadone for a cervical spine injury and repair that stabilized everything but the pain. I lost my docs and insurance during the changeover to the ACA, so I had to detox on my own. There were no doctors willing to take on this broken body with the plan I have. Needless to say, I hurt, a lot... They put me on that during treatment because it doesn't have any interactions with most treatment drugs. It's a good pain killer, too. Cheap as well. The previous meds OxyC and Fentanyl were high dollar and I couldn't get approval for them any longer. What a tangled web of medication.... It's nice not having to rely on them, but I did feel so much better when I didn't hurt all the time. I know others that resorted to street drugs when they lost their insurance. I feel badly about that, seems to be pattern developing around the country like that. We have a community nearby called the Villages, primarily old farts like us (respectable of course) but they too, have a high incidence of street drug use and surprise STD's! I guess people never cease looking for comfort, in whatever form!
Urinary loss. Certain medications can cause excess potassium loss in the urine. Blood pressure medications such as loop diuretics (e.g. furosemide) and thiazide diuretics (e.g. hydrochlorothiazide) commonly cause hypokalemia. ... A low level of magnesium in the blood can also cause hypokalemia.
I don't use NSAIDs at all, other than the very occasional Norco as a rescue med. I take 30-60mg daily of methadone to head off MS-Related cervical-spinal-headaches, 2 blood pressure meds, hydroclorothiazide and lisinopril, tamsulosin (helps old men pee drug) I walk at least one mile everyday, but less than 5, but no longer lift weights or do extreme exercise. I am probably guilty of not drinking enough water some days, but most days I drink 3 16oz (48oz) glasses a day, 4-6 cups of coffee and 12oz of Green tea after dinner.
My suspicion is that those BP drugs are the culprit, hydrothiazide with lisonopril works as a diuretic. Still when those creatinine #s fluctuate a lot, even though I am fairly consistent in water intake, it makes me wonder.
I wish I could be a fitness junkie, though, before MS I ran 5-6 miles every morning before work, did some moderate lifting.
-- Edited by LamontCranston on Wednesday 26th of July 2017 12:55:55 PM
-- Edited by LamontCranston on Wednesday 26th of July 2017 12:57:59 PM
I'm curious what your anti inflammatory drug use might be? Do you regularly use Ibuprofen or other Nsaids? Are you a fitness junkie by chance? Not normal exercise, but frequent and extreme. Does your diet and fluid intake allow for proper electrolyte replacement? These are just questions that come to mind. My wife had similar complaints with these same issues and we found some resolution by stopping some of her habits.
My kidney function has been "all over the place" at least in terms of Creatinine and Potassium for a couple of years, several times my lab results have strayed outside of normal ranges. There seems to be some relationship to various types of kidney malfunction and disease, and of course infection via dialysis via contamination.
There are a few very "medical" studies on this and a few papers published here and there. In this one, there are a lot of mentions that there are issues with HCV and kidney disease/malfunction. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3533219/
I've asked my gastro to monitor kidney function as part of the routine labs I'll be doing during treatment, and of course I am sure that guzzling a gallon of water daily will help keep my kidneys busy and hopefully I'll see some better results as it progresses.
I am curious, too, if anyone here has some kidney wisdom to share with us, or knows of a resource with that type of info. This article, posted by Tig mentions HCV-Kidney related manifestations and has some good basic info, by the way
http://hcvadvocate.org/hepatitis/factsheets_pdf/extrahepatic.pdf