Re: MTX, Orencia & a short whine

[Guest guest]

Was the other one perhaps Enbrel? Enbrel and Humira are not by

infusion. You give yourself injections. I'm on Enbrel, and it is

working very well to control my pain and inflammation. I inject into my

stomach, where I have plenty of extra room, and it doesn't hurt at all.

Enbrel or Humira might be good options to try first if you have problem

veins.

Sue

On Friday, April 25, 2008, at 03:33 PM, tombstone1968 wrote:

> Orencia was his first

> suggestion followed by Humira and remicaid? I already forgot the last

> one. Honestly, I am afraid of at least the 3 drugs I listed- they are

> all I.V. dosed. My veins are a problem- every time they draw blood at

> the Dr. appts my veins roll around and collapse. I end up getting

> stuck 2-4 times. Is getting an additional needle poke really worth

> this extra pain?

[Guest guest]

I suggest Enbrel, also. It has made such a difference for me. My level of

fatigue was better

in a matter of weeks!

School trips are so hard! Take a break and sit out while the kids are in

museums, etc.

Volunteer to be the adult to watch over backpacks, etc. while the kids are

engaged in

activities. Rest up before you go and have a quiet, restful time scheduled for

when you

return. Let your son know that you may have to take it easy a little and ask for

his help.

Being honest with him and engaging his help should go a long way. Be sure to

take your

Advil!!!

Have a good time with your son!

Pat

>

> I have been hovering around the edges here for a month or so.

> Currently I'm on 7 MTX per week with the required folic acid,

> Plaquenil...the MTX has quit working now. My RA doc wants me to stay

> on the MTX and folic while he waits to see if Orencia will be

> approved by my BlueCross insurance. If it IS approved I have to wait

> 3 more weeks to take the first I.V. dose.

>

> Does anyone have any experience with Orencia? Is it really that good?

> My doc gave me a choice of 4 drugs, described them, & allowed me to

> make the decision which to try first. Orencia was his first

> suggestion followed by Humira and remicaid? I already forgot the last

> one. Honestly, I am afraid of at least the 3 drugs I listed- they are

> all I.V. dosed. My veins are a problem- every time they draw blood at

> the Dr. appts my veins roll around and collapse. I end up getting

> stuck 2-4 times. Is getting an additional needle poke really worth

> this extra pain?

>

> Right now I'm taking all the NSAIDs (which don't help much) I can

> because I'm one of the few that can't take Prednisone while on MTX or

> Plaquenil. I break out faster than fireworks!

>

> My quick whine: next week I've promised my 11 yr old son that I'll

> attend his 5th grade school trip to the new Lincoln Museum and events

> in Springfield (Illinois) next week. Already I hurt so much that I do

> housework in the am and then collapse in pain on the couch in the pm.

> This trip will mean I have to be up and walking/functioning from 8am

> til 7pm. Anybody got any ideas on how I can survive this? I HAVE to

> go- my boy is so looking forward to this " trip with Mom " that he's

> talked about it for the last month.

>

[Guest guest]

May I suggest you bring a portable folding chair available in camping stores.

Attatch straps and wear it like a back pack. Bring some over the counter pain

meds and water.

Enjoy your precious time with your son.....

tombstone1968 <tombstone1968@...> wrote:

I have been hovering around the edges here for a month or so.

Currently I'm on 7 MTX per week with the required folic acid,

Plaquenil...the MTX has quit working now. My RA doc wants me to stay

on the MTX and folic while he waits to see if Orencia will be

approved by my BlueCross insurance. If it IS approved I have to wait

3 more weeks to take the first I.V. dose.

Does anyone have any experience with Orencia? Is it really that good?

My doc gave me a choice of 4 drugs, described them, & allowed me to

make the decision which to try first. Orencia was his first

suggestion followed by Humira and remicaid? I already forgot the last

one. Honestly, I am afraid of at least the 3 drugs I listed- they are

all I.V. dosed. My veins are a problem- every time they draw blood at

the Dr. appts my veins roll around and collapse. I end up getting

stuck 2-4 times. Is getting an additional needle poke really worth

this extra pain?

Right now I'm taking all the NSAIDs (which don't help much) I can

because I'm one of the few that can't take Prednisone while on MTX or

Plaquenil. I break out faster than fireworks!

My quick whine: next week I've promised my 11 yr old son that I'll

attend his 5th grade school trip to the new Lincoln Museum and events

in Springfield (Illinois) next week. Already I hurt so much that I do

housework in the am and then collapse in pain on the couch in the pm.

This trip will mean I have to be up and walking/functioning from 8am

til 7pm. Anybody got any ideas on how I can survive this? I HAVE to

go- my boy is so looking forward to this " trip with Mom " that he's

talked about it for the last month.

Raniolo

[Guest guest]

Re: [ ] MTX, Orencia & a short whine

May I suggest you bring a portable folding chair available in camping stores.

Attatch straps and wear it like a back pack. Bring some over the counter pain

meds and water.

Enjoy your precious time with your son.....

tombstone1968 <tombstone1968> wrote:

I have been hovering around the edges here for a month or so.

Currently I'm on 7 MTX per week with the required folic acid,

Plaquenil... the MTX has quit working now. My RA doc wants me to stay

on the MTX and folic while he waits to see if Orencia will be

approved by my BlueCross insurance. If it IS approved I have to wait

3 more weeks to take the first I.V. dose.

Does anyone have any experience with Orencia? Is it really that good?

My doc gave me a choice of 4 drugs, described them, & allowed me to

make the decision which to try first. Orencia was his first

suggestion followed by Humira and remicaid? I already forgot the last

one. Honestly, I am afraid of at least the 3 drugs I listed- they are

all I.V. dosed. My veins are a problem- every time they draw blood at

the Dr. appts my veins roll around and collapse. I end up getting

stuck 2-4 times. Is getting an additional needle poke really worth

this extra pain?

Right now I'm taking all the NSAIDs (which don't help much) I can

because I'm one of the few that can't take Prednisone while on MTX or

Plaquenil. I break out faster than fireworks!

My quick whine: next week I've promised my 11 yr old son that I'll

attend his 5th grade school trip to the new Lincoln Museum and events

in Springfield (Illinois) next week. Already I hurt so much that I do

housework in the am and then collapse in pain on the couch in the pm.

This trip will mean I have to be up and walking/functioning from 8am

til 7pm. Anybody got any ideas on how I can survive this? I HAVE to

go- my boy is so looking forward to this " trip with Mom " that he's

talked about it for the last month.

Raniolo

[Guest guest]

tombstone,

Please do a search on wheelchair rental locations in the area of the

center. I am pretty sure you can find a place that rents the

motorized wheelchairs similiar to the Jazi and such you see advertised

on TV. I have rented them several times when I travel. They deliver

the chair to your location and pick it up. Check with the museum

itself (their website is http://www.alplm.org/home.html). They may

even be able to provide you with info on renting these chairs.

The fourth drug you could not remember was probably Enbrel. I take

Enbrel and have done very well on it. It is an injection that you

give yourself once a week. I am also on MTX, Plaquenil and

prednisone. This combination has worked well for me for about 4 years

now.

--- In , " tombstone1968 " <tombstone1968@...>

wrote:

>

> I have been hovering around the edges here for a month or so.

> Currently I'm on 7 MTX per week with the required folic acid,

> Plaquenil...the MTX has quit working now. My RA doc wants me to stay

> on the MTX and folic while he waits to see if Orencia will be

> approved by my BlueCross insurance. If it IS approved I have to wait

> 3 more weeks to take the first I.V. dose.

>

> Does anyone have any experience with Orencia? Is it really that good?

> My doc gave me a choice of 4 drugs, described them, & allowed me to

> make the decision which to try first. Orencia was his first

> suggestion followed by Humira and remicaid? I already forgot the last

> one. Honestly, I am afraid of at least the 3 drugs I listed- they are

> all I.V. dosed. My veins are a problem- every time they draw blood at

> the Dr. appts my veins roll around and collapse. I end up getting

> stuck 2-4 times. Is getting an additional needle poke really worth

> this extra pain?

>

> Right now I'm taking all the NSAIDs (which don't help much) I can

> because I'm one of the few that can't take Prednisone while on MTX or

> Plaquenil. I break out faster than fireworks!

>

> My quick whine: next week I've promised my 11 yr old son that I'll

> attend his 5th grade school trip to the new Lincoln Museum and events

> in Springfield (Illinois) next week. Already I hurt so much that I do

> housework in the am and then collapse in pain on the couch in the pm.

> This trip will mean I have to be up and walking/functioning from 8am

> til 7pm. Anybody got any ideas on how I can survive this? I HAVE to

> go- my boy is so looking forward to this " trip with Mom " that he's

> talked about it for the last month.

>

[Guest guest]

you can also rent a portable walker that folds up not much bigger than an

umbrella and has a seat on it.  it is good to prop up on or sit on.  very

lightweight.  rita

Re: [ ] MTX, Orencia & a short whine

May I suggest you bring a portable folding chair available in camping stores.

Attatch straps and wear it like a back pack. Bring some over the counter pain

meds and water.

Enjoy your precious time with your son.....

tombstone1968 <tombstone1968> wrote:

I have been hovering around the edges here for a month or so.

Currently I'm on 7 MTX per week with the required folic acid,

Plaquenil... the MTX has quit working now. My RA doc wants me to stay

on the MTX and folic while he waits to see if Orencia will be

approved by my BlueCross insurance. If it IS approved I have to wait

3 more weeks to take the first I.V. dose.

Does anyone have any experience with Orencia? Is it really that good?

My doc gave me a choice of 4 drugs, described them, & allowed me to

make the decision which to try first. Orencia was his first

suggestion followed by Humira and remicaid? I already forgot the last

one. Honestly, I am afraid of at least the 3 drugs I listed- they are

all I.V. dosed. My veins are a problem- every time they draw blood at

the Dr. appts my veins roll around and collapse. I end up getting

stuck 2-4 times. Is getting an additional needle poke really worth

this extra pain?

Right now I'm taking all the NSAIDs (which don't help much) I can

because I'm one of the few that can't take Prednisone while on MTX or

Plaquenil. I break out faster than fireworks!

My quick whine: next week I've promised my 11 yr old son that I'll

attend his 5th grade school trip to the new Lincoln Museum and events

in Springfield (Illinois) next week. Already I hurt so much that I do

housework in the am and then collapse in pain on the couch in the pm.

This trip will mean I have to be up and walking/functioning from 8am

til 7pm. Anybody got any ideas on how I can survive this? I HAVE to

go- my boy is so looking forward to this " trip with Mom " that he's

talked about it for the last month.

Raniolo

[Guest guest]

Welcome to central IL. I'm in Mahomet. I here the museum is real

nice, although I have not had a chance to go myself. Take advantage

of every sitting oportunity, try to relax and enjoy yourself. If

your body quits at lunch time, maybe you could sit the rest of the

afternoon, explain to your son your problem. Above all, take care of

yourself & make sure your needs are met.

>

> I have been hovering around the edges here for a month or so.

> Currently I'm on 7 MTX per week with the required folic acid,

> Plaquenil...the MTX has quit working now. My RA doc wants me to

stay

> on the MTX and folic while he waits to see if Orencia will be

> approved by my BlueCross insurance. If it IS approved I have to

wait

> 3 more weeks to take the first I.V. dose.

>

> Does anyone have any experience with Orencia? Is it really that

good?

> My doc gave me a choice of 4 drugs, described them, & allowed me to

> make the decision which to try first. Orencia was his first

> suggestion followed by Humira and remicaid? I already forgot the

last

> one. Honestly, I am afraid of at least the 3 drugs I listed- they

are

> all I.V. dosed. My veins are a problem- every time they draw blood

at

> the Dr. appts my veins roll around and collapse. I end up getting

> stuck 2-4 times. Is getting an additional needle poke really worth

> this extra pain?

>

> Right now I'm taking all the NSAIDs (which don't help much) I can

> because I'm one of the few that can't take Prednisone while on MTX

or

> Plaquenil. I break out faster than fireworks!

>

> My quick whine: next week I've promised my 11 yr old son that I'll

> attend his 5th grade school trip to the new Lincoln Museum and

events

> in Springfield (Illinois) next week. Already I hurt so much that I

do

> housework in the am and then collapse in pain on the couch in the

pm.

> This trip will mean I have to be up and walking/functioning from

8am

> til 7pm. Anybody got any ideas on how I can survive this? I HAVE to

> go- my boy is so looking forward to this " trip with Mom " that he's

> talked about it for the last month.

>

[Guest guest]

Thanks! Yes, Enbril was the other drug I'd forgotten. After reading

all your suggestions I do feel more positive about all this. My

husband got on me tonight about being so negative...he's been dealing

with 2 severely bulged discs in his lower back for 6 years now. He

reminded me that I'm not to his level of pain yet and to suck it up

and take my medicine. After all, one Eeyore in the family is

enough!

So. I will take my Advils and patiently await my insurance co.

decision. For the school trip I have a little camo camping stool that

folds flat- I'd forgotten about it! I know it will fit in the

backpack since I have taken it hunting before, duh! I'm going to set

up my backpack as my " RAyBag survival kit " . Advils, a couple of

instant ice packs, a bottle or two of water, my Advils, neck pillow,

wrist supports, and extra batteries for the digital camera. I'm gonna

look forward to this trip and enjoy the heck out of it.

Thank you, folks! I really feel better about this little trip on

Tuesday now and I'm not so apprehensive about the Orencia or the

other medication options. Your suggestions are great!

>

>

[Guest guest]

To all of the folks who gave me such great suggestions: THANKS!

We got home tonight at 7pm, having left at 8am. Taking a school bus to

Springfield was no picnic, a 2.25 hour ride one way. I took a bag with

my NSAIDs, instant ice packs, Biofreeze, and my MP3. The museum had

seats scattered about, making it very nice.

We also went to the capitol building. They didn't have any wheeled

chairs/scooters available so I got smart- I rode the elevator. I'm

tired but not exhausted like I was expecting. This wasn't nearly as bad

as I was afraid it would be. My boy had a great time and so did I.

This stupid RA was starting to get the best of me mentally but after

this success? I'm not giving in. I know roughly how far I walked

yesterday and I'm going to go about the same tomorrow as exercise- I

need to lose about 100 pounds to make my RA doc happy and I think I can

do it if I start tomorrow after the bus picks up the kids. Thanks,

ladies, for the suggestions and also for making me feel like I could

really handle this school field trip.

[Guest guest]

I am so pleased for you. Wonderful to have a day to remeber with your son.

Good luck tomorrow. If you can do it grand but be kind to yourself a day of

rest may be necessary.

tombstone1968 <tombstone1968@...> wrote:

To all of the folks who gave me such great suggestions: THANKS!

We got home tonight at 7pm, having left at 8am. Taking a school bus to

Springfield was no picnic, a 2.25 hour ride one way. I took a bag with

my NSAIDs, instant ice packs, Biofreeze, and my MP3. The museum had

seats scattered about, making it very nice.

We also went to the capitol building. They didn't have any wheeled

chairs/scooters available so I got smart- I rode the elevator. I'm

tired but not exhausted like I was expecting. This wasn't nearly as bad

as I was afraid it would be. My boy had a great time and so did I.

This stupid RA was starting to get the best of me mentally but after

this success? I'm not giving in. I know roughly how far I walked

yesterday and I'm going to go about the same tomorrow as exercise- I

need to lose about 100 pounds to make my RA doc happy and I think I can

do it if I start tomorrow after the bus picks up the kids. Thanks,

ladies, for the suggestions and also for making me feel like I could

really handle this school field trip.

Raniolo