Re: Doctor's dumping patients

[Guest guest]

Yes, I agree with what you say.

Jennette

> Bennie wrote:

> Disagree here and medical community disagrees. If I were dumped off my

narcotics without replacement for a intractable pain I have like Steve with

Cancer, my blood pressure would elevate and my blood pressure stays up EVEN with

blood pressure pills because the pain is causing the blood pressure.

[Guest guest]

I did not think anyone mentioned anything about hating you.

I am screwed when it comes to pain control because I can have tylenol (no

effect), ibuprofen with benadryl (currently taking but really does very little,

but I sm trying), IV Fentanyl (can only have in the hospital) and possibly

something called Nucynta (although I hsve never had before). Other than that I

am SOL for pain control unless I am intubated and on a vent. no MD will risk

their license to do this unless absolutely necessary, like for surgery, etc.

> Bennie wrote:

> I didn't think the group here hated me that much but guess there is some pride

in saying you don't have to take narcotics so I can say that and slowly die.

Which should I chose ?

[Guest guest]

People actually told you its better to stop narcotic pain therapy and risk high

blood pressure caused from pain? That is not sympathy or help. My blood pressure

went up. I had been taking a half pill a day but got up to 3 of them a day and 2

beta blockers. No one can diagnose you. People here are for support not

demeaning you because you need narcotics to control your pain. I normally do not

post much. Do not come to groups to be judged for getting pain down so I can

live life outside of my bedroom. Shame on them all sorry you were put thru

needle brain opinions.

> Bennie wrote:

> Disagree here and medical community disagrees. If I were dumped off my

narcotics without replacement for a intractable pain I have like Steve with

Cancer, my blood pressure would elevate and my blood pressure stays up EVEN with

blood pressure pills because the pain is causing the blood pressure.

[Guest guest]

I have a short attention span. I will just say this: (1) I think Dr. Tenent is

great (2) I thought once you went on Methadone that it was for life.

> Bennie wrote:

> Disagree here and medical community disagrees. If I were dumped off my

narcotics without replacement for a intractable pain I have like Steve with

Cancer, my blood pressure would elevate and my blood pressure stays up EVEN with

blood pressure pills because the pain is causing the blood pressure.

[Guest guest]

Moderator's Note: Anne R is no longer subscribed to this group, but I approved

this message because I thought Steve brought up good points (as usual) and it

might benefit someone else.

Moderator

****************************************

Anne R.

I think that we've talked before (your story sounds familiar), but with my

memory is can't be sure of anything.

Nucynta is essentially a slightly stronger version of tramadol. It may be worth

trying just to prove that you're willing to try it.

As far as fentanyl goes, you mentioned that you can only take IV fentanyl, but I

am wondering if you tried more than one brand of fentanyl patches (at least one

gel reservoir and one matrix). Have you tried the immediate release fentanyl

products? (Actiq, Fentora, Onsolis, Abstral, Lazanda, or OTFC)

Have you considered an intrathecal pump? (if you're interested in more

information, I can give you a link to Pumpsters) I'm allergic to morphine and

codeine and can't tolerate IM hydromorphone (Dilaudid) (oral hydromorphone was

fine, but I was on antihistamines at the time, do who knows). I had an

intrathecal morphine pump trial and I was fine, but many doctors also use

preservative free fentanyl in intrathecal pumps.

Could they administer IM fentanyl through an external pump, like they do with

insulin?

If I may ask, who is your insurer? Do you have a pain management doctor? Someone

needs to help you. Your drug allergies/sensitivities make it difficult, but

there has to be some way for you to get relief.

I apologize if. I'm being too nozy, helping people on these groups is one of the

few things that keeps me from off-ing myself from a total lack of pain control.

I've been without the Actiq 1200mcg lozenges that made life livable for about

six months and I can't find anything to give me relief from the intractable

pain. I can't find anyone willing to help me except for my PCP, who has been

unwilling to prescribe Actiq since the FDA instituted the new REMS program. My

oncologist gave me a thirty day supply of Actiq 800mcg, but dropped me (with no

warning) when the time came for a refill.

Steve M in PA

> Anne R wrote:

> I am screwed when it comes to pain control because I can have tylenol (no

effect), ibuprofen with benadryl (currently taking but really does very little,

but I sm trying), IV Fentanyl (can only have in the hospital) and possibly

something called Nucynta (although I hsve never had before).

[Guest guest]

Sue

1) Dr. Forest Tennant and his Intractable Pain Patient's Survival Guide are

amazing.

2) that's a matter of opinion. Many people say that once you get on

methadone, you're on it for life because withdrawal from methadone lasts for

months, but it is possible to stop any opioid, including methadone.

Steve M in PA

> sioux wrote:

> I have a short attention span. I will just say this: (1) I think Dr. Tenent is

great (2) I thought once you went on Methadone that it was for life.

[Guest guest]

I think there was a misunderstanding! If someone needs opioid medication - no

matter what kind, they should NEVER have that medication taken away from them.

Medication that is taken away could cause a very serious illness or death.

Sue, susan, susiie, sioux

[Guest guest]

Matrese wrote:

> Many people say that once you get on methadone, you're on it for life because

withdrawal from methadone lasts for months, but it is possible to stop any

opioid, including methadone.

I had absolutely no trouble stopping methadone. I tapered off by taking

first 3/4 of each tablet for two days, then half of each tablet for four

days, then 1/4 of each tablet, etc. until I was down to 1/4 of one

tablet. It took two weeks and that was it. I had zip for withdrawal

symptoms. The only thing that happened was my pain level increased.

Then I waited a week before taking any new opioid medication. I wanted

to see what my body was really doing. The pain for the week was no fun

at all, but I know my organs thanked me for the short break.

Lyndi

[Guest guest]

The symptoms of methadone withdrawal are milder than oxycodone or, God

forbid, fentanyl.

How low was your dose? For chronic pain, methadone only comes in 5mg and 10mg

tablets, so most patients take several methadone tablets several times per day.

Most patients take over 100mg (ten tablets) per day. I took two tablets three

times per day IN ADDITION TO the Duragesic, oxycodone, and BTP (breakthrough

pain) medication, Actiq.

In addition to taking a low dose, you may just be one of those people who have

an easier time discontinuing opioids.

Opioids do not hurt any internal organs. They are the one class of pain meds

that is truly safe for long term use. See Dr. Forest Tennant's Intractable Pain

Patient's Survival Guide bit.ly/PainGuidePDF

Is your new opioid helping you more than, less than, or equal to methadone?

Which opioid are you taking? I hope you are getting decent relief.

Steve M in PA

> Lyndi wrote:

> I had absolutely no trouble stopping methadone.

[Guest guest]

Matrese wrote:

> Opioids do not hurt any internal organs. They are the one class of pain meds

that is truly safe for long term use.

My liver would beg to differ with the good doctor's take on it. I avoid

acetaminophen, but my liver almost immediately becomes slightly enlarged

when I take narcotics.

> Is your new opioid helping you more than, less than, or equal to methadone?

Which opioid are you taking? I hope you are getting decent relief.

I switched back to oxycodone. Not my choice though. My pain doc got

tired of the DEA counting the number of patients he had taking

methadone. Now, none of us are, so the DEA has backed off. Sheesh, I

wish that agency would go back to doing what it was organized to do and

leave the rest of us to hall alone.

I was getting decent relief, but now with the damage to my leg and foot,

my already damaged knee and hip have decided to get into the act. If

it's now one thing, it's another.

Good thing that no one ever told me that life was fair or easy :-)

Lyndi

Owner/Moderator

[Guest guest]

So sorry, Lyndi. At least there is hope for a better life in the future if

science keeps trying.

TX USA zone 9a/Sunset 28. gumbo soil. about 58 inches of rain/year

> Lyndi wrote:

> I switched back to oxycodone. Not my choice though. My pain doc got

> tired of the DEA counting the number of patients he had taking

> methadone.

[Guest guest]

Lyndi,

What does the DEA have against Methadone. It's the best, the cheapest, and the

least likely to cause addiction. (in my humble opinion)

, Susie in CA

I would like to go to work for them.

> Lyndi wrote:

My pain doc got tired of the DEA counting the number of patients he had taking

methadone. Now, none of us are, so the DEA has backed off.

[Guest guest]

Lyndi,

I thought Methadone was ok for internal organs?

I do not believe I could go without opioids for a month. Everybody has a

different type of pain and tolerance, I guess.

sue, susan, susie, in CA

> Lyndi wrote:

> The pain for the week was no fun at all, but I know my organs thanked me for

the short break.

[Guest guest]

I went off an opioid one time. It was difficult. Very difficult. I didn't have

any guidance from doctor who knew his business.

I was fortunate to know three pharmacist who worked all day and ALL night. Many

times I would call them at 3AM and they would give me guidance. I was just taken

off this medicine too fast. Oh, I cannot think of the name.

> M wrote:

> Many people say that once you get on

methadone, you're on it for life because withdrawal from methadone lasts for

months, but it is possible to stop any opioid, including methadone.

[Guest guest]

, I absolutely would not make more pain and distress “for monthsâ€

Oooooh no!

Sue in CA

How are you today?

> M wrote:

> Many people say that once you get on

methadone, you're on it for life because withdrawal from methadone lasts for

months, but it is possible to stop any opioid, including methadone.

[Guest guest]

I am not doing too well. I still have nothing to keep my pain under

control. We are experiencing thunderstorms, which are making the pain

worse. Thanks for asking.

Steve M in PA

> sioux wrote:

> How are you today?

[Guest guest]

Sorry you are having a rough day, Steve.

Sending you HUGS

Vivien

> M wrote:

> I am not doing too well. I still have nothing to keep my pain under

control. We are experiencing thunderstorms, which are making the pain

worse. Thanks for asking.

[Guest guest]

> M wrote:

> We are experiencing thunderstorms, which are making the pain

> worse.

Steve, the weather is killing me and I forgot to get my neurotin and I felt so

bad off it. So I have been curled up in a ball staying still.

I always think of the members in our group and welcome to all the new members.

Hang in there Steve

Thinking of you all. Bennie

[Guest guest]

,

Go to keyword " hypnosis " See what you think. See if it helps. It cannot hurt.

Sue,

Orange light is supposed to be healing. Be well, friend.

> M wrote:

> I am not doing too well. I still have nothing to keep my pain under

control. We are experiencing thunderstorms, which are making the pain

worse. Thanks for asking.

[Guest guest]

,

I live in CA where Marijuana is legal. I had a prescription for it and tried it

a couple of times. It was a terrible experience. I got kinda paranoid and

thought the smoke would go up my chimney or roll out under the door.

I have heard that it helps other people. Just throwing these ideas out.

You need a doctor who is willing to prescribe.

Sue, , Susie in CA

Actually, I would love rain. We are in drought. It is 104 degrees today.

> M wrote:

> I am not doing too well. I still have nothing to keep my pain under

control. We are experiencing thunderstorms, which are making the pain

worse. Thanks for asking.