Re: Oxycontin - Really need help

[Guest guest]

Dear Group,

I am fairly new to the group since my computer crashed last year. I

have not been able to keep in touch and I apologize for not being

able to keep up with everyone. I had a question I hope someone could

answer. I have had CP for twenty-five years and I'm not too hip on a

lot of the new drugs available. Recently my doctor after trying for

about a year got me to try oxycontin. Due to all the bad publisity I

was terrified. I'm having problems with it helping my pain, I'm up to

taking 80mg. three times a day. I've heard from other paitients on

another group about some drugs called MS Contin & oxy IR. Can you

tell me the difference between those and the medication I'm on. Am I

the only one who is still having pain on this medication?

Sincerely,

Janet

janetlcombs@...

[Guest guest]

MScontin is Morphine Sulfate - delayed / sustained release like

the OxyContin (which is oxycodone - delayed / sustained

release).

OxyIR is oxycodone immediate release. It is also known as just

plain oxycodone tablets or capsules depending on the

manufacturer.

I take 30mg oxycodone a day and it basically gets me to a pain

level of 4 when it is working. So no, you are not the only one who

has considerable pain while taking narcotic pain meds. The trick

is to find the right meds to take at the right time. For example,

morphine really doesn't work well for me at all...dilaudid works

nicely, oxycodone if I take enough of it works well. So you need

to keep trying until you find the right ones.

Laurie

[Guest guest]

Janet,

Haven't been able to post that much lately. I have actually been doing a lot

better in regard to my panc pain but on the days I haven't had doctor's appts

I have been incredibly tired. I just found out on Monday that when I was in

the hospital last time (Nov 19-21), my liver enzymes were elevated to about 6

times the normal limit. In addition to CP, I have autoimmune liver disease.

My meds were stopped in July because they felt I was in remission because my

liver enzymes were staying normal or near normal. I feel pretty sure the

liver disease has relapsed and that's the reason for the horrible fatigue

despite the fact that my panc is probably doing better than it has for about 2

years. Well, as usual I've gone off on a tangent. Now, I'll get around to

trying to answer your question.

I was taking MS Contin (extended release morphine) 30 mg three times a day and

Oxy IR (oxycodone immediate release) 5 mg up to 4 a day for breakthru pain. I

was probably on that amount/combination for a year. Yes, there were MANY

times that that pain med was not enough to control my pain. That's part of

why I've been in the hospital an average of more than once a month for the

last 2+ years. Once my pain gets beyond about a level 8 (after taking my oral

meds) I know the only thing that is going to settle it down is IV pain meds

and at least 24-48 hours of nothing by mouth. Sometimes I am throwing up so I

can't keep the oral meds down (despite trying phenergan suppositories). I try

to head off the nausea with either oral phenergan or zofran before it gets to

the point that I can't keep anything down. However, sometimes nothing I can

do at home will get things under control. Also, I can throw up once or just

have one round of diarrhea and my potassium often reaches a dangerously low

level.

I did find that keeping a pretty steady rate of extended release pain med and

then having immediate release pain med for the times that the extended release

just doesn' keep the pain to a tolerable level. Are you only taking

oxycontin? If so, perhaps your doctor would consider a short acting med for

breakthru pain.

You asked about the difference of MS Contin, Oxycontin, and Oxy IR. MS Contin

is simply extended release (long acting) morphine. Oxycontin is extended

release (long acting) oxycodone. Oxy IR is immediate release (or shorter

acting) oxycodone. Oxycodone is a synthenic codeine. It is similar to

hydrocodone (which is Lortab, Vicoden, etc.) but is basically a step above

hydrocodone in regard to how strong it is. According to my pharmacist,

Oxycontin is a very good and safe pain medication as long as it is taken as

prescribed. It got such a bad name from people crushing the Oxycontin to get

the entire amount into your system quickly instead over the intended extended

time period (as with any 'time release' med). In my case, oral meds are

pretty limited because I also have liver disease so the amount of tylenol I

can take is pretty limited. There are not very many oral pain meds that don't

have either tylenol, ibuprofen, or aspirin added to them. I also cannot take

aspirin or ibuprofen because I am on blood thinners for an autoimmune clotting

disorder, which causes my blood to clot too easily. If you can take tylenol,

adding Lortab or Vicodin for breakthru pain might help keep your pain under

better control. If your doctor okays that, I recommend asking for half the

amount of Lortab 10 vs Lortab 5. My reasoning behind that is that you can

break the Lortab 10 in half (if all you need is Lortab 5) and you only get

half the amount of tylenol that you would get in a Lortab 5. In my opinion,

anyone with cp needs to limit the amount of tylenol when possible since cp can

sometimes cause irritation to the liver.

In the last several months, I was having increasing problems with lower belly

pain, abdominal distention, and horrible constipation. All of which seemed to

irritate the pancreas and cause increased flare ups of my pancreas pain. I

was in the hospital so many times from the end of May to October that I lost

count. My internal med doc and I decided it was time for me to talk to a

surgeon regarding testing and possible surgery for SOD. I was sent to Mayo

Clinic in rochester, MN in June - which was pretty much a major waste.

However, the doctors at Mayo did say that they thought it was possible that my

cp was caused by SOD. I've had a gastric bypass so a full ERCP and manometry

testing for SOD via ERCP is no longer possible for me. Just in case you're

wondering, I had my first 'documented' attack of acute panc almost two years

prior to the gastric bypass so the pancreatitis was not caused by the gastric

bypass. anyway, the surgeon that I asked my internal med doc to refer me was

a major idiot. He did a whipple on a friend of my husband's sis with

pancreatic cancer and she is doing quite well, so I assumed he would be a good

choice and he's only 100 miles south of where I live so going to him was

possible in just a day trip vs going further away and all the cost and stress

involved in that. To make a long story short, he ended up insisting that my

cp and all my GI problems are totally caused by lupus. He then called my mom

into the exam room and proceeded to tell me and my mother that there

was 'absolutely nothing mechanical' causing the cp and my continued abdominal

pain, etc. He also said I was on 'way too many medications', that I was on

the amount of morphine they give people who are dying with cancer and that I

was obviously 'addicted' to morphine. the only good thing about the appt was

that he told me that the morphine was probably the worst thing to give someone

with GI problems. He said that immodium and lomotil (given for diarrhea) is

the same med as morphine with the narcotic taken out. He said if you want to

totally shut down the GI tract, you give a patient morphine. He told me that

it would take me at least a year to stop the morphine and that I'd

need 'professional help'. I told him I was under the care of a pain mgmt

doctor, had been for over two years, and followed all of his rules to a tee.

He was an absolute pompous ass who decided in 20 minutes that he knew more

about me and my health than the doctors who have been caring for me for 1 1/2

years + (my internal med doc/pcp, rheumatologist, GI/hepatologist, and pain

mgmt doc). This surgeon specifically used the word addicted, not clinically

dependent, in regard to the MS Contin, both to me and my mother as well as

saying it several times in the letter he wrote to my internal med doc, GI, and

rheumatologist - suprisingly, he did NOT write the letter to my pain mgmt doc

despite the fact that he had my pain doc's name, address, and phone number.

Even before reading the letter and his 'assessment' of my problems that he

sent to my doctors, I was very mad about the way he had handled the appt.

Since he made sure to tell me the things he told me in front of my 69 year old

mother, he obviously assumed that I was not going to be honest with my family

about what he had told me. I decided that maybe the morphine was adding to my

relatively new (started in about June) increasingly worse lower belly

problems. Also, I was determined to prove to myself that I was not 'addicted'

to morphine. clinically dependent, yes, ADDICTED, NO! I went from taking MS

Contin 30 mg three times a day to none at all in just over 3 weeks. The

only 'professional help' I needed to stop the MS Contin was a short visit with

my pain doc's physician assistant to find out exactly how long I should taper

the MS Contin before stopping completely. By the time I had the appt with the

pain doc, I'd already tapered the MS Contin to one 30 mg tablet every other

day. He gave me a couple of weeks worth of MS Contin 15 mg (lowest dose) and

I didn't even need the full two weeks worth before I was able to stop it

completely. As soon as I started tapering the MS contin, my lower belly

problems and constipation improved. I've been off the MS contin totally for

about 8 days and my constipation problems are gone and most of the lower belly

trouble has stopped as well.

In saying all this, I'm not trying to say that the surgeon was totally right

about the MS contin being the worst pain med for someone with GI problems. I

know that all narcotics tend to cause problems with constipation. According

to my pain doc, the narcotic that causes the most problems varies from patient

to patient.

I just had another appt with my pain doc's phys. assistant today to make sure

I'm doing okay without the MS Contin. I've had a few flares since seeing the

jerk surgeon on Nov 3rd - one bad enough to be hospitalized for 3 days.

However, overall, I am doing much better since tapering and then stopping the

MS Contin. On the bad days, my previous four daily Oxy IR 5 mg is not enough

without the MS Contin. However, since on most days I've been okay without the

long acting pain med, I really didn't want to go back to a long acting pain

med, even if it was something different from morphine. so, we decided that

we'd increase my Oxy IR 5 mg to an average of 6 per day. The doctor was going

to give me an average of 8 per day but I told him that I thought for now, an

average of 6 per day was the right amount.

Thankfully, my doctors know me much better than the surgeon who decided he

knew me so well after only 20 minutes. My internal med doc was totally

disgusted with the letter and assessment he got from the surgeon. The first

thing he said was, " Well, I must say that in all my years of practice, that is

the first time I've had a consulting doctor send me xeroxed pages from a

medical textbook! I was not at all impressed with him. " I told my internal

med doc that I hoped that if he ever felt I had a problem with 'addiction' or

abusing pain med that he would address it and insist that I get help. He

assured me that he would do it in a minute and that he had never once had any

doubt that I was totally honest with him and everyone else regarding my pain.

He said, " I know that pancreatitis is incredibly painful and that you cannot

rely on the labwork to determine how severe the pain is. "

today, I told the pain doc's phys assistant about the letter from the surgeon

and he assured me that the doctor was obviously an idiot. He said, " Any

patient that comes to me telling me they have tapered down morphine as quickly

as you did and then continued tapering and stopped it completely in under a

month most certainly does NOT have a problem with addiction. We are very

careful to scrutinize our patients for any signs of addiction or abuse and at

the fist hint, we address the problem pronto! " He also said that if the

surgeon felt I had a problem with abusing pain med, he had both a legal and

ethical responsibility to notify the doctor prescribing the pain meds. to me,

that was just further proof that the surgeon was simply a pompous idiot! I

won't bother going into much more detail about the letter and assessment he

sent to all my doctors EXCEPT my pain doc, but suffice it to say he all but

said that all my doctors were stupid. In just 20 minutes, he had all the

answers to my health and 'mental' problems so my other doctors must be pretty

stupid to not figure out that everything going on with my health was just

caused by lupus and 'way too much' medication.

I am very, very fortunate that I have earned the trust and respect of my

current doctors, as well as my entire family. If that were not the case, I

could be in dire straights because of this surgeon's assessment of me. That

is very scary and the thing is I know there have been members of this group

that have had that happen to them.

Well, obviously I needed to vent one more time about this surgeon. I'll do my

best to just forget about him and be thankful for my wonderful doctors and

wonderful family who do totally trust me. Believe me, I do not take that

trust lightly and I would NEVER EVER want to do anything to put it in jeopardy.

Okay, it's almost 4 a.m. and I've got to make myself go to sleep!

W

[Guest guest]

Janet,

Laurie answered your question about the differences between MSContin and

Oxycodone. When I was taking MS Contin (Morphine Sulfafe), I did not feel

that it was effectively helping with my pain. I was taking 20 mgs., twice a

day,

and after trying this for two weeks, my Pain Management doctor switched me

back to a Duragesic patch (75 mgs.) and Oxycodone for BT pain. I take 20

mgs. of the Oxycodone, up to three times a day, if needed.

This particular combination seems to be working the best of anything else I've

tried. There are many days that I don't even need the oxycodone at all.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina State Rep.

SE Regional Rep., PAI

http://pancassociation.org/anthology.htm#Heidi

Note: All comments or advice are based on personal experience or opinion,

and should not be substituted for consultation with a medical professional.