RE: Positive and Negative Maybe!

[Guest guest]

:

It is very infuriating that the media doesn't go talk to actual chronic pain

patients who use this medication to survive. I swear, the news is generally

all bad news as it is. I, like you, don't understand why they can't put in

a positive interview on how many people this medication is helping and how

hard the media themselves are making on people that actually need the

medication to get by.

Could someone give me some suggestions to take to my doctor? I tried to get

put on the Oxycontin instead of the Duragesic patch in the beginning of my

pain management program but the neurologist/pain management doctor

absolutely refused to go that route and instead put me on the patch. I

fought tooth and nail and gave many valid reasons why a pill would be better

for me than a patch. His entire reason for not putting me on the Oxy was

because of " bad press on CNN " . I was furious.

Now, I am fixing to be in a predicament. I have been told by my regular

doctor and my mother's surgeon, who have seen about my left knee and hip

that hydrotherapy exercise is all either of them want me to do. Well, I

bought a membership in our local fitness center that is a part of the

hospital. Well, I can't go without a ride because I am blind. I can't go

in by myself if I don't have a sighted person with me. My mother is on the

enrollment with me for that purpose however, it has been months since we

have been able to go and my membership runs out in April. I can't even get

out of the last few payments. So, I finally sold some property that I have

owned but has sat unrented because of the age and condition of the mobile

home that was on the property. It took a while but I finally was able to

get it sold and I took the proceeds from it, since the title was free and

clear and it was completely paid off with no liens or anything and had been

for many many many years, to purchase a spa and am having my garage closed

in and made into a spa room. The floors are going to be put at the same

height as the house so I don't have to deal with steps. My poor knees and

hips couldn't take that every day.

Here is my first concern. The hot water from the spa, even at the fitness

center, caused my patch to release more medication than it was supposed to

but it was, again, due to hot water and even warm water. I will be using

this spa at home every day and most-likely in the beginning it will probably

be a couple times a day until I get back to where I was after the two months

of doing 5 days a week. I felt like a million bucks when I got out of the

spa there. I was able to reduce my breakthrough meds to at least a third of

what I was taking pre-spa.

Now with a spa at home, it will be an issue again. Also, the patch leaves

horrid little red marks all around the patches adhesive. The bioclusive

cover doesn't bother me at all it is just the patch glue. I am also blind

so it is hard for me to make sure the patch is on flat and even and where it

won't come off, hence the need for the covers. Now for the covers, it is

hard for me to line up the covers over the patch. I have tried to put the

patch on the cover before putting it on my skin but it crinkles up just a

little and that just a little makes my skin irritated so it is best put on

after the patch has been placed on my body. With the lupus as I am sure is

the same with the many problems the rest of you face, I often times can't

remember when I put the patch on and when it needs to be changed. I have to

literally made a note on my computer and have it announce when I need to

change my patch. Well, if I am out and don't hear the ding reminder, then I

forget to take it off and change it. When I do change it, I go through the

entire process mentioned above. I also cannot get the patch in but so many

places by myself. My teenager works and goes to school. She is also in

clubs in high school and gets after school tutoring to help her with her

grades to give us a better shot at grants and such because she wants to go

to a four-year university. My 7yo is just too young. My husband isn't home

much and is generally gone most of the time so I can't rely on him being

here to change it. My mother can't come every three days to change it. She

has two adopted children and a house to run as well. The lady that comes

out to help me during the day is not allowed to dispense medications, which

is what she would be doing if she helped me with the patch to get it in a

higher place. I generally do not even ask her because I don't want her to

get into trouble with her job. She has helped me a couple of times but I

don't make it a habit because she needs her job.

My regular doctor is very good but I am concerned as to how to approach him

on the subject and am afraid that he might decrease or eliminate my

breakthrough meds. Those breakthrough meds get me through cold, damp, icey

weather and lupus flares. I can't use my patch as a barrier for the flares

anymore because I am on the 100 now. When I was on the 25 and the 50, I

could just put on another patch, per doctor's instructions, and where the

both of them until time to change them to get through the flare.

Any ideas? The men are here today putting in the floor today and will be

tearing out the panelling in the garage today. They probably will not

finish it today but I am going to have to wait on the linoleum to be put

down before the spa can be delivered anyhow then I will have to have an

electrician to bring in the wiring from the breaker box to the spa and

another line from the breaker panel to allow more electricity to that room

so it won't trip the breaker when I run my dishwasher at the same time hubby

uses his air compressor, which by the way, also causes my freezer to lose

power. We are keeping the front of the garage for a utility room and

putting in a door between the spa room and the utility room and then one

from the utility room to the outside. My freezer, air compressor,

daughters' bikes, and our lawnmower will be able to stay in the garage

ulility section. We will have double doors put in so hubby can drive the

lawnmower in.

I hope all that makes sense. I am so tired today. I was up most of the

night trying to find out whether the kids would go to school today because

of the snow and ice we have had. I tend to either repeat myself or babble,

if you will, when I am this exhausted.

Thank you for listening. This is going to be a beautiful day but I am not

going to feel like the day is. The sun is shining outside for a change and

the heat from it is wonderful. I just hurt like the dickens today because

of not sleeping last night.

When a man screams, you must learn to whisper. - Graffiti Bridge.

[Guest guest]

Sam,

May I suggest that you talk to your doctor about Avinza. It is extended

release morphine. I take it once a day and it is so much better than the

patch. I feel like my old self again and not over medicated and have the

headaches I had with the patch. I also used to get the red rash all around

the patch area. In fact - I have pictures of it I took just to show my

doctor. I bought a digital camera just so I could email them to him.

Avinza is only 2 years old. Gets no bad press. I was on the 50 patch

taking hydro 6 tablets a day. I switched to Avinza 180mg per day. It's so

nice only to have to take your medicine in the morning (or evening - if you

prefer) and be done with it.

You are not supposed to have to take any breakthrough medicine with it, but

I've found that sometimes I do need to take a hydro or two. But it is not

often - maybe 2-3 times a week.

Hope this helps,

-Jeff

RE: Positive and Negative Maybe!

> Could someone give me some suggestions to take to my doctor? I tried to

get

> put on the Oxycontin instead of the Duragesic patch in the beginning of my

> pain management program but the neurologist/pain management doctor

> absolutely refused to go that route and instead put me on the patch.

[Guest guest]

Jeff:

Now that I have a new print cartridge in the printer, I can print out your

note so I can get my daughter to get the medication wrote down for me. I

will definitely be getting him to check into it. The sores from the

Duragesic patch do get painful at times. My skin may be toughening up a bit

because it isn't as bad as it was in the beginning but I still have little

sores, especially when I have to put them on my lower stomach area. I have

had two children and the first one caused me to be all belly when I was

pregnant so my stretch marks are terrible. The patch just seems to pull on

that already stretched and damaged skin and make it worse. A couple of

years ago I actually had an infection within one of the stretched areas. I

don't know what made it happen but all of a sudden the stretch area started

forming a knot and then it got infected. I was put on an antibiotic and a

cream and it went away. But, as you probably know, there are only so many

places you can put the patch on, especially when it is just you putting it

on without help from another person.

Thank you so much for the information. I hope it will help when I see my

doctor. The contractors were here again today but only another half-day

because the head guy had a funeral wake to go to yesterday and the actual

funeral today. They have gotten in most, if not all, of the floor joists.

I think tomorrow they will start some serious tearing out of the walls and

such to get ready for insulation and drywall/sheetrock and possibly the

flooring that goes beneath the linoleum. I am just waiting with such

anticipation for the day when the spa can be delivered and I can actually

fill that rascal up, get the chemicals right, then have a long soak. I miss

that soooo very much from the fitness center's spa.

Once the spa goes in and the majority of the room is finished and the

electricity is pulled in, I will go ahead and make the appointment with my

doctor. I had almost considered a wait-and-see approach as to how it will

affect me, the patch in hot water that is, but I had my teen reread the

insert of the box and it plainly stated that it was not recommended for

heavy bathers or for those that spend time in saunas and spas because this

causes the medication to be released to quickly. Also, back when I was

going to the spa at the fitness center every day, I had the hardest time

keeping that darn patch on even with the bioclusive cover on it. The water

just seeped between my skin and the cover then under the patch. I think a

change in medication is in order. I don't want to overdo it.

What is so sad is that other than the rash from the patch, I find it works

rather well. I don't get sleepy feeling on it. I don't feel drugged or

anything like that. It just makes me functional. The only sleepiness I

encounter is the outright fatigue. I would though prefer to just take a

tablet once or maybe twice a day instead of wearing this patch for three

days.

Thanks for the info. I will be carrying as ammunition along with the insert

to the patch box. I hope he doesn't start changing around my other

medications though. Everything is working great as far as keeping the

inflammation down, the nerve pain at a minimum, the joint pain at a minimum,

the restless leg syndrome under control, and the new anti-depressant along

with the dose of estrogen has made a huge difference in how I feel each day.

I fear upsetting that.

Sam

When a man screams, you must learn to whisper. - Graffiti Bridge.

Sam,

May I suggest that you talk to your doctor about Avinza. It is extended

release morphine. I take it once a day and it is so much better than the

patch. I feel like my old self again and not over medicated and have the

headaches I had with the patch. I also used to get the red rash all around

the patch area. In fact - I have pictures of it I took just to show my

doctor. I bought a digital camera just so I could email them to him.

Jeff