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Musing about opioid use etc

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Chronic Pain
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theswan
Veteran Member
Joined : Nov 2005
Posts : 1153
Posted 1/25/2021 2:36 PM (GMT -7)
I have posted now and again here but now with prostate cancer I'm spending time on that forum.
This month was a nightmare. The radiation therapy caused retention that led to catheterization and finally a paraphimosis which is very painful. That was followed by a very painful procedure to release my damaged foreskin then a bad UTI
Urinary retention had me on the verge of passing out. The added pain and emotional distress led me to taking too many pain pills
I used Subutex or buprenorphine which works well but the pharmacy will not allow me to get a new prescription until tomorrow. I have half a pill left so it will be a bad night. NYS law allows for a day or two early fills but I don't want to argue as many chain stores are worse and will not fill until the 30th or 31st day
Just blowing off steam because I'm sick of the war on opioid use.
Frankly people are dying because doctors are cutting them off leading to street use and Russia rollete with fentanyl.
Doctors ought to at least offer alternatives such as detox or medications like buprenorphine for pain and maintenance

Have others had horror story's?

Glen Heinsohn
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theswan
Veteran Member
Joined : Nov 2005
Posts : 1153
Posted 1/25/2021 7:30 PM (GMT -7)
Had half of the pill left and hope that my prescription will be there at 9am as promised.
The good news is buprenorphine has a long half life so withdrawal is not an issue for several hours but my pain may flair up.
I hate myself for running short this month. They say to take it every 6 hours but the fact is after 4.hours.the pain returns so I half my dose except for the AM dose

Glen Heinsohn
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oceanfisher58
Regular Member
Joined : Aug 2017
Posts : 387
Posted 1/27/2021 12:09 PM (GMT -7)
Glen,
I am in the same boat as you are. I have cancer and degenerative disc disease. I am constantly juggling pain meds. It is impossible to control pain when you are given nowhere near enough pain meds. I take a pain pill and wait two hours. If no relief then I do as you do and take another half a pill. This usually helps but results in being short at the end of the month.

I am constantly ranting about how the CDC controls our meds and makes drs cut back on meds or give them less effective meds for pain. For those of us who have imaging evidence of spine/cancer issues or some other problem-give us a break and let drs prescribe meds to improve our quality of life. I cant tell you how many times I have been up all night with pain.

I always thought when I reach retirement age I would NOT have to worry about pain. It seems in the world we live in now we must worry about every little thing. Pain causes depression and anxiety. People turning to street drugs for relief just breaks my heart.

Rant all you want Glen.
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theswan
Veteran Member
Joined : Nov 2005
Posts : 1153
Posted 1/27/2021 1:26 PM (GMT -7)
Thanks Oceanfisher

I got to the pharmacy at about 10 after 9am They waved for me to wait a minute then singled for me to enter the store. (Covid-19 has forced people to wait outside-it's a small store so they can see who is outside) Anyway they handed me 3 bottles with 30 pills each and said they will have the 4th bottle today. I use 4 eight milligram pills a day which is actually very generous because the usual max is 24mg a day so I'm happy to get the 32mg amount.
I do not blame them as they have given me my medication several times on the 29th day so it was my fault in the end (but one gets used to those extra 4 pills a month and of course will use them when you awake at 2-3am screaming because you laid in one spot too long)
I have to be a little long here so bear with me because it may help another down the line.
Opioid history goes back to around 1995 but was off and on often off completely for a couple of years at a time. An auto accident made my condition much worse and I ran the gamut from failed surgery to percocet to morphine and even methadone. Toward the Spring on 2008 I was so dependent on Percocet that I'd go into withdrawal after 2 to 3 hours.
I searched Google for "Safer opiates" and came upon a clinical trial at Columbia Presypeterian/NYS psychiatric center. It has a long title along the lines of "Pain patients on opioid medications who take more then prescribed amounts of medications" So I went and applied and got accepted into an inpatient study. One had to be in moderate withdrawal before they started with their regimen which was differing dose's of buprenorphine.
First however they'd give you a starting dose to take away the WD's and that was wonderful. After 20 some odd hours of hell, it was fairly rapid relief. I was given the real buprenorphine then some was mixed with placebo so I never knew how much I was exactly getting. I'd report my pain in a log and by the time I felt it was decided for me that 16mg worked best and twofold. First it helped my pain and second, WD was held at bay.
I'd have stayed the 4 weeks but they wanted me to take other opioid medications and "rate" them. I said to them all I wanted was to find out of buprenorphine would work on my pain. I apologized for leaving early and they set me up with a doctor who would prescribe it.
Long story short, that was 2008 and in late 2009 I tapered off to get a baseline on my pain. I went a year without any opiate medications but my pain got worse and I found a clinic that prescribed buprenorphine. I went back on 2mg twice a day but have worked up to my present 32mg (a combo of increased pain for various reasons and tolarance)
I hope buprenorphine can offer help to others as it has for me. It may work or may not however for example, my pain clinic stopped prescribing all opioid medications which was horrible for so many but lucky for me, continue buprenorphine prescribing.

Oceanfishing? I used to love it!

Glen
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oceanfisher58
Regular Member
Joined : Aug 2017
Posts : 387
Posted 1/29/2021 6:18 AM (GMT -7)
Hi Glen,
I had brackytherapy for my cancer. What a nightmare that was also. Knowing what the right treatment plan is --is next to impossible. I used to post on the prostate cancer forum here but left after one person was rude. Others on the forum said he was always this way but I don't understand why he wasn't banned.

I take both short acting and long acting opiates for my DDD. Do you find your meds work good for your pain? I am not familiar with Subutex. I refuse methadone as it labels the user as a drug addict. Drs look at your records and then jump to conclusions. The opiate crisis has ruined pain control for those who most need it.

Best of luck to you Glen
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theswan
Veteran Member
Joined : Nov 2005
Posts : 1153
Posted 1/29/2021 6:39 PM (GMT -7)
Buprenorphine is usually a combo of buprenorphine and naloxone. The naloxone is there to prevent abuse by IV use or snorting. It's called Suboxone and is used to detox and or maintain a opiate addiction. However it came out as just buprenorphine for pain but was never popular until someone found it's potential for addiction.
Subutex is pure buprenorphine. It work's as both agonist and antagonistic. In layman's terms it excites opioid receptors and de-excites them.
This leads to less euphoria and less slowing of breathing so it's much safer. It does have some euphoria but it's limited and does not induce much craving.
Important thing is it does kill pain and to be honest can make one feel mellow and has been used as an antidepressant.
I am a big fan obviously and wish others would give it a try.

Glen
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theswan
Veteran Member
Joined : Nov 2005
Posts : 1153
Posted 1/29/2021 6:47 PM (GMT -7)
Oh about my Pca troubles. I'm 90% sure I'll have surgery. If TURP was a sure cure that would allow me to return to radiation therapy without danger of urinary retention, I'd opt for that. My sleep apnea makes me very afraid of surgery as the trendenlburg position will push my abdomen into my diaphragm and I have to trust some doctor to maintain a patent airway.
On the other hand 50 treatments in a painful position with a balloon up my butt is no fun.
So yeah surgery may be my best option

G
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oceanfisher58
Regular Member
Joined : Aug 2017
Posts : 387
Posted 1/30/2021 4:14 PM (GMT -7)
Glen,
The people over on prostate cancer forum are some really smart people. They can help you in making a decision. I chose radiation through seeds as I just didn't want to deal with a catheter and the surgery. I was given an almost as high result of curative rate as with surgery. That being said I was NOT prepared for the pain upon waking and the burning and pain day two post op.

I have both a radiation oncologist and a urology surgeon together to place the seeds. Only time will tell if I chose wisely. I wish you the best of luck with whatever choice you make.

On the chronic pain side of things I am glad you found something which works for you. I stay away from methadone and suboxone as the stigma my drs relate to me is not a path I want to go down. Being labeled a drug user who needs rehab is not something I want to deal with. I must say its a shame the way chronic pain patient have to jump through hoops for pain control. I always thought I would NEVER have a problem being prescribed sufficient meds after being diagnosed with degenerative disc disease, having surgeries and having cancer. My surgeon wants to do another TWO FUSIONS and I flat out tell them I REFUSE to have this done if I cannot count on pain meds when I need them. I still remember being told how after my first fusion I would never need opiates again. I now know to expect the unexpected.
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theswan
Veteran Member
Joined : Nov 2005
Posts : 1153
Posted 1/30/2021 5:30 PM (GMT -7)
I understand. My fusion failed and the surgeon said I should not be in pain. Well I was and still am. What happens after surgery nerve blocks, ablation after ablation one builds up scar tissue that press on the nerves. So what once helped becomes the problem

By the way buprenorphine for pain is accepted and they even have a pain patch. The key is to get buprenorphine for pain not Suboxone. Suboxone has the stigma not buprenorphine.
I listens to the advice on the forums and it's excellent. As said surgery is my best bet unless I can be 90% sure TURP will cure the retention issues. I do not think they will guarantee that. Meantime I work on weight loss and do Kegel exercise

Glen Heinsohn
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theswan
Veteran Member
Joined : Nov 2005
Posts : 1153
Posted 2/28/2021 10:52 AM (GMT -7)
Update: I found a solution to me taking more then my limit of 4 pills a day. I used a small zippered pouch that has two zippers that meet allowing them to actually lock (with a small padlock) My wife has the key and each evening I take out a tiny container with 4 pills (a few have 12 for when I go upstate for 3 days)

This worked well and I had no anxiety over it this past month. Sure I could break the lock or use a knife to open the pouch but that would be kinda dumb.

I just deal with it if i need more
Saved one pill last month

Glen
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Mercy&Grace
Veteran Member
Joined : Jun 2013
Posts : 1914
Posted 3/3/2021 3:17 PM (GMT -7)
Do you remember where you bought the small zipper pouch with the lock? A friend of mine has been looking for something like that for another use.
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theswan
Veteran Member
Joined : Nov 2005
Posts : 1153
Posted 3/3/2021 3:23 PM (GMT -7)
No sorry, it is similar to a carry on bag and happens to have a big zipper and a side compartment with a smaller zipper and they come together when both are closed.

"Staples" has cash boxes that are lockable from pretty cheap to expensive

Glen
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