Small Victory- PCP on July 3

[Guest guest]

As many of you know, I have been in hell for the past six months. My PCP

forced me to lower my Duragesic from 300 to 200, discontinued my methadone

and Actiq, and replaced my oxycodone 360mg/day (30mg two 6x/day) with

hydrocodone 120mg/day (10-325 two 6x/day). I still can't get an intrathecal

morphine pump. I was told that three 100mcg/hr Duragesic was just too much.

Today (technically yesterday, July 3) or had a follow up and begged,

pleaded, and threatened to have surgery with an approximately 75% fatality

rate. When I asked him if there was absolutely anything we could try that

we hadn't already tried he spent a long time looking through my electronic

chart and making notes, and while I waited for him to do that I mentioned

the tumor resection (biopsy- 10% fatality rate; surgical resection- 70-85%

fatality rate) and mentioned that it has a more than fifty percent fatality

rate and said that the high fatality rate might be a good thing, it would

help with the pain or kill me. I think that it finally got through to him

that I'm not alive and that I'd rather be dead than bedbound and unable to

go outside, play with my daughter, cook, clean, shower, keep my wife

" satisfied " (don't get me wrong, it still happens, just not nearly

frequently enough to keep her happy; 2-3x/day ==> 3-4x/month), or anything

else that makes life worth living. Anyway, faced with the fact that I have

tried every oral opioid available in the US and his crippling bias against

oral fentanyl and injected opioids, he actually INCREASED my Duragesic back

up to 300mcg/hr (three 100mcg every other day).

It is a small victory, but a victory none the less. Unfortunately, I just

refilled my 90 day supply of two 100mcg every other day, so the insurance

is going to refuse to pay until they would have been used up, so I don't

know when I will be able to safely* start the new dose, but at least it has

been ordered!

* safe being defined as not having to worry about running out due to the

insurance company screwing my over

Thanks to everyone who has been helping me get through this difficult

process. I know I'm not through just, but I've made a small step. Now, I

just need someone to prescribe Actiq and someone to prescribe the meds for

and manage a pump. I also need to talk to my PCP about restarting the

methadone, but one thing at a time. Plus, I'm afraid that I might scare him

off by mentioning methadone again. He abandoned me just after I asked him

to prescribe it (with the PM doctor's recommendation) the first time. The

PM prescribed in for the two to two & a half months before he kicked me out

of his office and it helped a lot, but not nearly as much as the Actiq,

Duragesic, or intrathecal morphine, so it isn't worth risking my current

meds to maybe get the relief from the methadone back.

I feel so beyond exhausted from dragging myself to the appointment, but it

was worth it! For once, it was worth it. To think, I almost canceled this

appointment twice (I canceled it a month ago, but they didn't finalize the

cancellation so I got a reminder call on Saturday for said canceled

appointment). I guess the appointment was just meant to be :-)

Steve M in PA

PS Sorry to post this across multiple boards, but I want everyone to know

what is going on and writing a separate message for each board is more than

I can handle right now. I apologize to those of you who belong to more than

one of these boards and get multiple copies of this message*.*

[Guest guest]

Happy to hear, Steve, that you succeeded in getting your Duragesic increased.  I

hope that as soon as you can start using it, you feel some relief from this

g-d-awful pain.

Keep fighting!

Vivien