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Rights of Chronic Pain Patients In Jeopardy and Use of Oxycodone

Hello,
To make a long story short, I have severe Crohns disease and have had two resections in my intestines. I still work at the age of 59. I was seeing my GI Doctor and after much debate convince him to put me on oxycodone short release as oppose to extended release as it went through me with any pain relief, because of short bowel from both surgeries. I'm currently on 20 pills a day at 15 mg per pill at dosages of 60MG, 60MG, 90MG and 90MG. I take it every 6 hours and I vary the amounts depending on the pain levels.

The oxycodone does wonderful for my Crohns as I get 90% relief at the end of my last dose and 60 to 70% in between. I have never ever gone above 300MG in a day. My theory is if you take the lowest dose which for me would be 45MG or 60MG in which I do not get 100% relief until I get to the 90MG .I get 92% relief from my pain.  I'm proud to say that I have never gone beyond that dosage after 14 years and after much research found a dosage that works for me. I have been off the pain meds twice when I had my two surgeries by weaning off them and did not miss them

Here is the problem, I have been going to pain center for the last 5 years as my Dr. got scared giving me high amounts of oxycodone. At first the pain center was not happy with the amounts and try to cut me down only to see it was not helping my pain levels so they back off.. The pain center is now getting political pressure from all sides. The FDA, Whitehouse, and the group "PROP" which is trying to hurt chronic pain patients. I would assume these groups have an influence as they are coming down hard on us chronic pain patients from all avenues.

The pain center I go to and they are hard to find, out of the clear blue sky told me last month I must cut down to the equivalent of 200MG to 250MG of morphine which would be that I would need to cut myself to 11 pills or less which is roughly 166.67MG or less compared to 300MG a day. No other meds thrown in just do it. I was waiting for marijuana to get settle in Boston Mass, to give that a try and hopefully cut some of the narcotics but they will not let me do that as they would kick me out if I even try it. I said it may help me get to their goal if it would work and I still got no for an answer.  

They have already cut me 30MG of meds per day. I already feel the effect which is putting pain into my work, exercise, gardening, and walking.  My quality of life is starting to be effected and I'm trying to work with them but I'm afraid they will go all the way to 10 or 11 which would really make life a sucky place to be. I will be able to do it but I will get the things I love in life out. It's not right I should have to pay the price because someone OD on 3 or four prescription drugs. The news does not tell you that but when they OD there are more than one drug in them.

I hope to work with the pain center to cut some out but I should not have to, as I do not abuse the meds and get urine test every month and follow all their strict rules and rightly so. I also lock up my meds and go to one pharmacy as they demand. I can go 18 hours with not meds and not miss the oxycodone but the pain by then is so bad. The point is I do not miss it at all but I need it for pain relief.

Any ideas on how I can get them to feel compassion and work with me not to go that low. I really should not have to cut down at all but in order not to seem like a drug person seeking to hold on to those high amounts, I need to work with them, but I'm afraid they will go to low. Help please if you had any experience in this and what was your outcome?

Anybody with success with high amounts of oxycodone out there that helps you function in every day duties? I would like to hear from you. We are not drug seekers but unfortunate souls with dreadful diseases trying to get by in life but when we go to hospitals, doctors etc.. and we know all about the pain meds to help with our disease we are nothing but drug seekers.

I have no side effects, plus with Crohns the oxycodone works in my favor with bowel movements as the meds slow me down so I'm not in the bathroom all the time. I also feel the oxycodone helps slow the disease down I really do.
In ending, I will keep fighting for my right and all of our rights as chronic pain patients to have the freedom to have pain meds and to have the dosage we need no matter how high it may seem if it helps as live a long and productive life. Let’s stay together and fight these groups who mean to do the right thing but are going about it in the wrong way by hurting us by putting dosage limits on our quest to get pain relief.
15 Responses
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Avatar universal
You should look into a Fentynal patch.  You will find that whatever opioid you are prescribed, you will go up in dose over time to get the same effect IMO.  The patch is much better than the pills.  The benefit is a constant dose instead of an up and down all day.  I hated the pills, have been on the patch for many years, and will probably never get off them as my wounds are too painful to live without.

If you ask for a patch instead they may be more sympathetic because there is less room for abuse.  You may still get some pills for breakthrough pain.
Helpful - 0
Avatar universal

Thanks for the feedback and a special thank you to all of you for your ideas and the stories that you share about your own life experiences.  I will continue to be honest and pray that they listen.

I just started a new job after 8 mos. of being layed off. I never gave up and worked hard to find work while being sick. I'm a Customer Support Engineer which is very stressful on it's own minus the fact I have Crohns. That alone beside trying to cut down is hard. I have tried all the crohns meds and the ones that work for me are prednisone and entocort.

I'm also doing a pain chart which I started in March before they started cutting me down and also adding how I feel, how my day goes on a section called notes. I also compare how my exercise has been effected by cutting down. Hopefully by me taking the time to do this it will show them its really and I hurt very much.
Helpful - 0
Avatar universal
Hi Nighthawk, have they tried you on Humira at all? Another med that may be worth trying is "Welchol", this one just treats the symptoms though, not the disease itself. I have IBS and while its no where near as bad as chrons (I was tested for it but the blood test came back negative) I understand the kind of pain you can get from that. Many people think, oh its just a tummy ache, why do you need narcotics for that, well its way more than just a tummy ache, and what do they think aspercreme will work, but check into the "Welchol" it may help some. Technically its a cholesterol medication, but the side effects are what might help. It acts like "kitty litter" on your insides. That's the way my doc explained it to me. Anyway I wish you good luck.
Helpful - 0
Avatar universal
The only reason I can stay on the same amount is because I take less in the morning by 45MG but have more pain but come evening I take more which makes it work. Otherwise, I would keep upping it and upping it and there would be not stopping. The problem is it does not work at lower dose like say 10 MG then take 30MG it would just barely touch my pain.

Something about allowing your self to feel or taking in more pain during the day to get awesome relief every night .It has work for all these 12 years. One would think the pain center would be thrilled and would like to study why that works but instead do not care and just wants to get me to the new dose  change that is happening across the board where everyone must get down to 250MG of Morphine whether you like or not.

I talked to the  social worker who said do your best work with them and they might adjust the 250MG to be higher. Outside of that I have not seen any compassion and I think they keep forgetting I have crohns..
Helpful - 0
1326416 tn?1370927001
I had severe withdrawals once when my medication was stolen by a family member. I was on high dosages at the time, and had to wait almost 2 weeks for medication refills. I went to the Er when it got really bad (vomiting, hot and cold flashes,diarrhea, legs aching and restless, anxiety, dehydration, and others that I'm forgetting. The Er stabilized me with some iv dilaudid, and recommended a detoxification center. i went to the detox. center. It was quite the place let me tell you! It was a state run facility, and must have been run with a tiny budget. It was a filthy place, and the staff was not very professional at all. You are there for 5 days and start with 40 milligrams of methadone, and taper by 5 milligrams each day. After leaving there, I started to withdraw again, but not as bad as before. It was a terrible experience all around, i must say. I'm lucky it happened 2 weeks into my prescription, and not at the beginning. I could have had to go a full month in withdrawl! My medications are locked in a safe that's bolted to the floor, and much to large to be carried away. I didn't talk to my cousin for about a year (that's who stole my medicines), and then we patched things up. He's sober now, and is actually a part time drug counselor. I think anyone who gets physically dependent can suffer withdrawal symptoms. Some can handle it better than others, and the dosage when they are stopped makes a big difference in the degree of the wd symptoms.
Helpful - 0
3949693 tn?1370816595
ive been on oxyxodene for way 2 many years for acute pain management  8 20MG for years and percocet for breakthrew med and now using Fentanyol 50mcg patchs id really like to stop taking everything but i know i cant i find the perc are not doing anything for breakthrew as ive been taking them for over 15 years n now the Fentanyol patch i need a higher dose does anyone know of a good breakthrew med ?? im in Canada ive got cronic pain withdrew off the oxys pain came back worse then ever
Helpful - 0
Avatar universal
thanks nighthawk----om
Helpful - 0
Avatar universal
When I cut down after my two resection surgeries I was doing 300MG oxycodone daily like I'm doing know but coming off it with no pain because of having surgery was easy for me. Having a blockage with crohns is three or four times a year is 10 times worse that having withdrawals my friend. I would cut down by 30MG a day every 5th day until I was off it. No problem!!!
Helpful - 0
3112530 tn?1434032033
I have gone through withdrawal a few tomes from the drugs I took. FENTANYL was the worse for me. Took a few months for my system to respond and I am still trying to put back on the weight I lost. I was down to 108lbs!
I am used to the withdrawal symptoms. This is a sign that I am taking too much. That is one reason why I stopped them all.
I also developed pancreatic problems which became severe and treated with shot of morphine in the hospital every 4 hours. That didn't help any.
Helpful - 0
Avatar universal
so did you experience any wds at all shinty? Or just quit opiates (with tapering).......or lower...but is it easy for you to do. anxiety levels?  sick tummy?  what?   Know anyone who has minimal wds.   You know you hear horror stories every forum you go to----i imagine if folks have no problem they don't report or share at sites like mh?  I am so curiousd about all these individual differences in wds.......so...how about you.......anybody else----madman?   mollyrae?       i probably should go to addiction places for a better  chance of response  huh?   Duh!
om
Helpful - 0
1326416 tn?1370927001
I have lowered my dosage many times throughout my chronic pain career. I believe it's important to be on the lowest dose tolerable just in case more medication is needed (a dosage increase) for a surgery, or if your pain level just shoots up for some reason. I have been on as much as 6 tablets of 80 mg. oxycontin with 6 tablets of 30 mg. oxycodone daily for pain control. other examples are Mscontin 200 mg. tablets 2 tablets 3x daily with 6 tablets of 30 mg. morphine IR for breakthrough pain. / 150 mcg. fentanyl patches 2 patches every 2 days, with 6 tablets of 30 mg. oxycodone for breakthrough. i consider those all pretty high dosages of different medications. I do know of other people that are on even higher doses. everyone's different. I never had any a problems tapering down to "normal" dosages. I was once on only 6 tablets of 10 mg. oxycodone daily after being on those other dosages mentioned above. I'm lucky i guess, as far as withdrawals, etc.. Like I said, everyone's different when it comes to medications and there effects.
         shinty
Helpful - 0
Avatar universal
would you please share with us (or you could just send note to me) just how you lowered your dosage----or even quit----with no wds.  Or very little?
     I have always wondered if there are folks who do not have any wds.   or "not-so-bad ones".....when they taper or quit opiates.   Hello everybody---do you know of anyone or have you heard of anyone who has no problem with that?  (maybe a new thread?---someone start it).....

om  
Helpful - 0
3112530 tn?1434032033
With all the pain clinics I have been to, I have only signed one contract. Don't know why but I did bring my medical records to show I was not trying to abuse medication but all the pain clinics I have been to, constantly give me opioid's, which caused more harm than good. I developed pancreatic problems due to the heavy amount of drugs I was on. Now I have to watch what medications I take and their side effects.
Please offer the advise to look up the medications and their side effects. I was on methadone in the early stages of my diagnosis and the side effects were severe with vomiting. I couldn't even make it into the doctors office without vomiting in the parking lot. Then he gave me another medication for the vomiting but the pain still persisted. Never want to go through that again.
Each person is different and with my history I always bring my medical records to show what has been treated and what doesn't work. I have even had a few experimental procedures which I was willing to try for pain (something like Capsicum patches but stronger - directly from the drug manufacturer but it only burned my skin).
That has been my experience but I suggest researching the symptoms and the treatment options on line. He help educate as well as focus on what can be treated.
The medical community is starting to wake up and recognize symptoms that were hotly debated before. The census was that if it could not be seen, the treatment options were limited to 'unknown cures' and older treatment options. Now I have read up on new treatment options that were never considered before and the education is worth the read.
Helpful - 0
1326416 tn?1370927001
I'm in the Boston area and go to a pain clinic also. I'm thankful that I have not been asked to go down in my dosage, nor forced to yet, after hearing your story. I think it's ridiculous what's happening regarding people with pain, and pain medications being withheld, or given at insufficient dosages. I think it's because of all the "patients" that abuse the system, and are getting pain killers for all the wrong reasons. As I sit and wait every month at the pain clinic, I'm appalled at some of the conversations that I overhear, and by the way some of the patients look and act. I know you can't look at someone and tell if they are in pain, etc., but there are indicators that tell you that "something isn't right here".  I hear conversations that include things like "I hope I don't get The "op's" from the pharmacy", and "how do you get your dosage increased with this doctor"? The 'op's" are the crush resistant oxycontin tablets. They are the only type of oxycontin being made now, and once the "old style" are gone, they are gone (I'm glad for that!). Asking another patient how to get your dose increased isn't appropriate conversation in the doctor's office, imho. It's this group of "patients" that are really hurting things for the "legitimate" patients, imho. I don't think there is anything we can do about it either. I think doing a urine sample every month is a ridiculous way to enforce compliance with prescribing policy. It's easy to have the medications in your system every month by taking a dose or two the day before your appointment. the urine test is only showing what medications are present, and nothing more. It's very costly to do a "level" check, and simply isn't done at the pain clinic I attend. i think random pill counts would be a great way to see if patients are complying with the "rules". Any missing pills would raise a red flag immediately. Whether anyone is selling, or abusing their medications, they would be caught doing so. It would be inconvenient to go in for a 'pill count", but isn't it already inconvenient? It would also be inconvenient for the doctor's staff to perform this task also, and that's why it isn't done imho. there are simple things that can be done to combat the diversion issue. They just aren't being done because they are inconvenient. Like I said, I'm already inconvenienced.   P.S.- nighthawk56- have you ever tried methadone for your pain? it has a very long half life (stays in your body longer) than most medications. It might help you get consistent pain relief, especially in your situation. i'm on it as a long acting opiate, and it works great for me. Talk with your doctor about it. Good luck.
     shinty
Helpful - 0
Avatar universal
thanks for a relevant post nighthawk---we need more of them!
You have told my story (in relationship to meds etc.) very well and i agree. What i don't get is........as a mature adult----well-informed----in-my-right-mind! (whatever that is)-------and in partnership with my doctor------why can i not have the medication i need to treat my documented pain.  I can go out right now and buy some whiskey and drink myself to death.  Or smoke myself to death. Both behaviors that also kill others-----drunk driving deaths and injuries-----second-hand smoke----you know?     But relieve my pain?  Nope---sorry. Watch out if you speak up----you do not want to get on their list do you?  Want out of pain?  Too bad.
     Thank you for this post. I wish i knew what to do to help. Any ideas out there?

om
Helpful - 0
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