Re: How many need morphine? (Long post)

August 25, 2006

, if you have any pictures of the country side....can you post and

share your web site again? I loved seeing the photographs a few years ago. Glad

to hear your uveitis is under control. Best regards, Connie

August 25, 2006

Hi Fr. Dave

I am so, so, sorry for what you are going through at

present. I am glad you have a faith that helps you deal with

it also.

I wondered how long it took for your doctor's to realise

that you needed morphine for your pain? I am dealing with

this very issue at the moment. The pain from my flare is

getting worse on a weekly basis. (The pain used to be

restricted to my knee and hip, but has now spread to every

joint in my body). It used to be controlled by 60 mg codeine

(I take 150 mg total of indomethacin daily also), then that

didn't work. Ultram/tramadol was then tried and worked for a

few days and then had to be accompanied by the codeine to

make things bearable.

Yesterday, in unbearable pain, my husband went with me to my

doctor, but I could only see a 'locum'. I have an

appointment next week with my rheumatologist and requested

help for the pain, until I see my rheumy. The locum was

going to send me away with nothing (wouldn't give me even a

few morphine) but I convinced him to phone my

rheumatologist. The rheumy prescribed 60mg prednisone for 2

weeks (and then to taper it, of course) and also gave me

sufficient morphine until I see him on Wednesday. He is my

hero!

Thankfully, the prednisone reduced the inflammation to a

level that today can be controlled with the Ultram/codeine

combination.

I reached 'rock bottom' yesterday. I was frightened for the

first time, as the pain was unbearable and no help seemed

forthcoming: As I said to the unsympathetic locum, " if I had

cancer, you would not hesitate to prescribe me morphine " . He

didn't disagree, but said I was 'too young' (I'm 40) to take

morphine. (Sub-text: instead, you must suffer for the next

40-odd years.) I am going to ask my rheumy to write a note

that I can carry, (explaining my disease and appropriate

medications) for when dealing with ignorant medics.

How many others of us have had to face this issue?

August 25, 2006

wendy, i can partially understand your feelings regarding morphine and an

unsympathetic medic, as i live in china.

fortunately, my symptoms arent that bad, because being in china can present

certain difficulties that most people back home dont face. i've only needed to

see doctors here for uveitis problems so far, perhaps a few times a year and the

treatment is much the same as at home, however the language barrier is there and

is problematic. i can speak mandarin in many situations, but at the hospital i

dont have the vocabulary, not to mention the fact that every region of china has

its own variant of mandarin and or local dialect of some other language. so

while i get decent treatment here (so far) i often have questions that arent

answered the way i would like or would expect. but if i dont like it i could

always go home. so far, i choose to stay. bangkok isnt far away and that would

be my first stop if i need an english speaking doctor, if things get really bad,

then i would just head home.

this list is particuarly valuable to me since i'm so far from home.

best wishes to all ~ james

wjkh@... wrote:

I reached 'rock bottom' yesterday. I was frightened for the

first time, as the pain was unbearable and no help seemed

forthcoming: As I said to the unsympathetic locum, " if I had

cancer, you would not hesitate to prescribe me morphine " . He

didn't disagree, but said I was 'too young' (I'm 40) to take

morphine. (Sub-text: instead, you must suffer for the next

40-odd years.) I am going to ask my rheumy to write a note

that I can carry, (explaining my disease and appropriate

medications) for when dealing with ignorant medics.

How many others of us have had to face this issue?

---------------------------------

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August 25, 2006

Thanks . You certainly must face extra challenges

being so far from home!

August 25, 2006

Hi

Thanks for your prayers. I was popping up to 10 Percocet per day for two years

when he finally upped it to plain OxyContin SR 20 mgms twice daily along with

Percocet for breakthrough pain. It was upped to 3 - 20 mgm tablets daily within

3 days. It stayed that way for roughly a year and a bit, then it was up to 4

OxyContin SR per day a month and a half ago. It has since been upped to 5 per

day if necessary. For breakthrough pain he gave me Voltaren SR 75 mgm SR and I

was pleasantly surprised that it worked. I have also added Ibuprofen 400 mgms

or Extra Strength Tylenol when needed. Again I was surprised when they worked

as well. He does not want to increase it any further until they get another MRI

to see if surgery will help. I can tell you one thing, up here in Canada,

anytime you get a years supply of OxyContin SR dispensed at one months supply at

a time, all sorts of bells and whistles go off in the halls of justice. It is

only available on a 3 part prescription, one part for the drug store, one part

for the health care agency and one for the College of Physicians and Surgeons.

God help anyone caught selling their prescribed pills to someone else.

I have another observation to make, and that is the amount of Tylenol and

Ibuprofen we all take on an individual basis. If a person who never had Tylenol

before took the dosages we take, they would be D E A D. As little as 8 regular

Tylenol is enough to kill an adult. Less to kill a child. Much similar

problems with Ibuprofen but I am not sure of the dosage. That is scary. As for

Prednisone, back in the early 60's I was prescribed Prednisone for Asthma

brought on by allergies which seemed to be centralized in one area of Ontario,

Canada but there was a problem. The Armed Forces specialist that prescribed it

forgot to discontinue it so they kept on refilling my prescription. I wondered

myself what was going on. Anyway, I took the stuff for 7 years and had to taper

off the drug very, very slowly and under strict medical supervision. Not really

a problem as I was a Medic and X-ray Tech. But I am still breathing, which is

half the battle first thing in the morning.

Fr. Dave

Hi_,___

August 25, 2006

Hi Fr. Dave

Boy, have you thought of writing a book on all this?! I

mentioned earlier that my brother died (of lung cancer) last

year. He was on morphine and still had break-through pain.

To cope, he started using marijuana (but I am not suggesting

this to us on the list!), which he said helped with both

pain and nausea. By the time he died, he had cancer in his

bones and brain too.

I mention this, as it seems so wrong that non-cancer pain

seems to not be taken seriously enough. I sincerely hope

your pain is controlled sufficiently now.

Here is a link to an article on arthritis pain (from the

Arthritis Society) that I found very insightful

http://www.arthritis.ca/programs%20and%20resources/news%20magazine/1997/pain/def\

ault.asp?s=1

Best wishes,

August 25, 2006

Thanks . Actually I qualify for a medical exemption from the drug laws to

use Marijauna and the Canadian Government will pay someone to grow it. Either

that or I could grow my own. Only one little problem!!!!!!!!!!! I am allergic

to it!!!!! I break out with great, huge red welts all over me if I come

anywhere near it. That made for some interesting days in a costume at games. I

was the unofficial Police drug bird, etc. Inside in a Hockey Rink was ever worse

as it is so enclosed.

There is a doctor up here in Canada that writes a syndicated column on medical

matters for newspapers. He has campaigned for years for stronger drugs for non

cancer related pain. He also was instrumental in the governments approval for

Heroin for use in terminal cancer patients. Heroin is the strongest and most

effective drug for that type of pain. So in Canada a doctor can prescribe

Heroin in certain controlled ways. Certainly do not want a terminal cancer

patient getting hooked on Heroin.

OxyContin SR has become a favourite drug of choice for junkies. They disolve

the whole tablet and shoot it directly into their veins. That negates the slow

release formulation and they get a wild high from it, only to come down in a mad

crash a short time later. In our neck of the woods in Alberta the street price

for one tablet of OxyContin SR can be as high as $80.00 CDN and I pay roughly

$0.72 per tablet so the law looks very closely at my usage. I could be a rotten

drug dealer if I use more than my alloted monthly prescription. I could just

see it if the pharmacist made a mistake and gave me my whole years supply at one

time. In fact when I first was prescribed it the doctor wrote out a

prescription for 300 tablets and the pharmacist filled it. I had to rearrange

it so I only received 100 per month. The cops would have been at my door in an

instant if I had that many standing by.

The pain is well under control at the moment but believe it or not, a change in

barometric pressure sends the pain levels soaring. Just can't figure out which

one of the mix causes that. Maybe it is all in my head.

I have actually thought about a book and do have quite a bit written down and

documents to prove it but I do not think the world is ready for it yet.

I have downloaded the page and will read it closely and bookmark the site.

Blessings

Fr. Dave,_._,___

August 26, 2006

Wow! That is so interesting. I clearly do not have a

criminal mind, as I'd rather be free of pain than wealthy

from illegal dealings

I'm glad your pain is under control too.

August 26, 2006

<<The pain is well under control at the moment but believe it or not, a

change in barometric pressure sends the pain levels soaring.>>

It's not all in your head, Fa. Dave. The change in the barometric pressure

hits most kinds of arthritis. For many years, I thought it was the change to

the cold weather...until I realized that my joints reacted to the warm

weather in Florida. The articles say that any " sudden " change or swing in

pressure

numbers, whether up or down, can cause this. I'm a better weatherman than

most of TV! Best regards, Connie

August 26, 2006

+Dave said:

> The pain is well under control at the moment but believe it or not, a

> change in barometric pressure sends the pain levels soaring. Just

> can't figure out which one of the mix causes that. Maybe it is all in

> my head.

+Dave, its not in your head. AccuWeather.com even has an Arthritis

Index along with their UV and Pollen Indexes. I laughed when I saw that

- validation!

On a more serious note, I am on a pain medication, Suboxone, that I

haven't seen anyone else mention here. When I was considering

switching back in Jan or Feb I asked about it and Connie gave me some

very helpful information. I took the plunge and I'm really glad I did

since it is working very well for me. I had been taking OxyContin,

which worked well for me but I had had my back surgery and my pain was

greatly relieved so my rheummy took me off of it. She wanted me to go

to an addiction doctor that she had been working with and had great

results but I was scared of the stigma and wouldn't and got off the oxy

on my own - loads of fun! I was then on Vicodin and later, Norco,

which is like Vicodin but with a lesser amount of Tylenol. I had a

couple more surgeries and the pain level and the Vicodin/Norco levels

went up and I was not reacting well to them and they weren't working.

My rhuemmy wasn't happy with the situation and urged me to go to the

addiction doctor again. I trust her so I finally agreed. Besides

addiction he also specializes in chronic pain patients. At my first

appointment with him, he spent 45 minutes with me really talking to me,

not down to me like I was afraid of, and gave me his cell phone number

to call if I had questions. I have never had a doctor be that upfront

and real before and I have had some great doctors(and some terrible

ones!). He put me on Suboxone which is used to wean addicts off opioids

and is starting to be used for pain relief somewhat like methodone. It

is a partial opioid agonist which means that it doesn't make you high

and blocks the other opioids which is why it works for addicts but it

also is long lasting without the up and downs and withdrawal symptoms

that I was having everyday from the Norco. He " detoxed " me in the

office which meant that I went in after not having any pain meds for 12

hours - in withdrawal - and he gave me a dose and we waited to see if

anything happened. The pain went away and nothing weird happened so I

went home and played with the dosage and called him every few hours

until I was comfortable. I can control things with 3 1/4 tablets a day

altho I can take up to 3 a day and I have when I was off methotrexate

and hadn't started the Enbrel yet. I feel very in control with it, I

can take as little or as much as I want within the 3 tablets a day -

dosage could go higher but I haven't needed it - without having the

withdrawal reaction I got if I changed the dosage of the Vicodin, Norco,

or OxyContin too quickly.

I kind of rambled on there but I kind of have felt like a guinea pig

since I don't know anyone else who has done this and I thought I'd share

my experiment. It may be something that people want to consider if they

are having problems with pain control although it seems to be pretty new

so I don't know how available it is. I could give you my dr's website

if anyone is interested.

Meg

August 26, 2006

I just re-joined the group after being gone for several years, but wanted to

post after seeing Meg's notes. I just got a certified letter from my

rheumatologist saying he won't see me anymore. It's a long story, but he says

I'm not following his instructions, which isn't true, but basically I've been

very unhappy with him. He says he's concerned that I'm taking oxycodone for

pain, but he hasn't given me any alternatives. I've never heard of Suboxone and

now I'm curious. This doctor threatened to not give me ANY oxycodone and make me

go cold turkey through withdrawals which I've experienced before and know is not

fun. I don't want to take oxy any more because it makes me so tired and I'm not

getting much relief anymore but I don't know what alternatives there are and now

I'm going to be looking for a new doc. I started Enbrel about two months ago

with some minor improvement. I have Reiter's Syndrome. Thanks for this group!!

Jody - Wisconsin

Reiter's - 1992

August 26, 2006

Thanks Meg, for the very interesting information.

August 27, 2006

hi jody..... if your rheumatologist has that kind of attitude then you're better

off without him. wishing you well in finding a new and more understanding one.

james

" , Jody L. " <jcooper@...> wrote: