Re: [

[Guest guest]

Hi :

Sounds like you are doing better, I sure hope so. Has

the Enbrel kicked in yet? How are you doing as far as

getting out to ride your horses? We have been in a

very bad humid heat wave which made riding, and even

going outside to feed, unbearable. Well, the heat has

now broken, thank goodness, so my body feels better

(RA and fibro kick in sooo bad with humidity), and I

want to ride so much. However, I have gotten second

degree burns to the top of my right hand a week ago,

and the doctor told me yesterday that it might take

another 3 months to heal. Have to keep it covered,

burn creamed, wrapped, dry, and clean. No way can I

do clean when riding! So, I am sitting in my house

watching my horse get fatter and more spunky - should

be an interesting ride when I finally am able to! I

hope you and Oliver are starting to enjoy some

pre-fall riding together -

take care, my friend -

Kathe in CA

--- Randall <krandall@...> wrote:

> Hi Sadie,

>

> I had a lot of trouble with the Mtx in the

> beginning, particularly

> before I switched to the injectable form. But I

> have to say, it

> really doesn't bother me much any more. I'm a

> little more tired the

> day after I take it, but RA itself causes fatigue

> too. Over all,

> I'm much LESS fatigued than before I started on the

> meds I'm on

> now.

>

> Prednisone helped a lot with the pain, swelling and

> stiffness, but

> it didn't do much for the fatigue for me... By

> mid-afternoon every

> day, I was dropping in my tracks. My younger son

> goes to a charter

> school in another town, and we carpool with other

> families. I was

> scared to death on the days I had to frive in the

> afternoon, because

> I was so tired, I was afraid I might fall asleep

> driving the car. I

> still often need to take a nap in the afternoon, but

> I don't often

> have that overwhelming bone-wearying fatigue I had

> in the beginning.

>

> I was really afraid of Mtx in the beginning too.

> But I've read a

> lot about it (and about RA!) since then, and it

> really is one of the

> safer RA drugs, and it is effective for a lot of

> people. The way I

> see it is that it's a whole less dangerous than the

> RA is without

> treatment!

>

> Good luck in finding drugs that work well for you!

>

>

>

>

__________________________________________________

[Guest guest]

Hi Kathe,

I've had my ups and downs. I am trying to keep riding as close to

every day as I can so that I stay strong. Some days I bull through

it inspite of knowing that I'll hurt (more) later, and some days I

just can't.

Embrel seems to be helping, but now I am trying to taper off the

prednisone, and every step down it seems to take me at least 2 weeks

of feeling pretty miserable before I level out again, even with the

Enbrel and 20 mg of Mtx. (plus Voltaren twice a day)

The rheumatologist and I talked about the various options yesterday

though, and I REALLY want to get off the prednisone. So we decided

that I'll keep tapering off the Prednisone, but reduce it only by 1

mg per month. At that rate, it will be 10 months before I'm off it

completely, but she says that considering how my body has reacted to

the dose reductions so far, if we don't go that slowly, I'm likely

to be really miserable.

She's also not thrilled with my incomplete response to the Enbrel,

but we decided to give it at least another month. (for a total of 3

months) I forgot to remind her that we were going to try the 2x

weekly version to see if that helped it last through the week

better, so I'll call her next week, and see if we can arrange that.

I feel like I should use up the doses I have left of the once a week

kind first, though... that stuff is just too expensive to toss!!!

Overall I feel MUCH better than I did in the beginning, but there

are still days that are bad enough that I end up needing Percocet to

get comfortable enough to sleep, and most nights I still need at

least Ultram. Since the last time she injected my hips, they've

been pretty good. At this point, it's my hands and feet that bother

me most.

Besides the reduction in prednisone, I think the other thing that

has made me feel worse is that between family vacations and the

horse show in August, followed closely by the start of school, my

life has gotten much busier than it was earlier in the summer. I

really did feel better when I didn't have to do so much!

I'm still trying to balance holding out hope that I'll get

my " normal " life back again with trying to find more time to rest so

that I feel better. I HATE looking at my gardens all full of weeds,

and my aquariums all over-grown, and forget about the scrapbooking I

used to do. But if I ride, and work, and take care of my family

responsibilities, there is nothing left. I've already given up

these other things, I refuse to give up riding at this point. I'm

not sure which is better... living the life I want, in pain, or

giving up so much of what I love to do and feeling better.

Now aren't you sorry you asked ;-)

Hope you're hands are feeling better soon... how did you burn them

so badly?

>

> > Hi Sadie,

> >

> > I had a lot of trouble with the Mtx in the

> > beginning, particularly

> > before I switched to the injectable form. But I

> > have to say, it

> > really doesn't bother me much any more. I'm a

> > little more tired the

> > day after I take it, but RA itself causes fatigue

> > too. Over all,

> > I'm much LESS fatigued than before I started on the

> > meds I'm on

> > now.

> >

> > Prednisone helped a lot with the pain, swelling and

> > stiffness, but

> > it didn't do much for the fatigue for me... By

> > mid-afternoon every

> > day, I was dropping in my tracks. My younger son

> > goes to a charter

> > school in another town, and we carpool with other

> > families. I was

> > scared to death on the days I had to frive in the

> > afternoon, because

> > I was so tired, I was afraid I might fall asleep

> > driving the car. I

> > still often need to take a nap in the afternoon, but

> > I don't often

> > have that overwhelming bone-wearying fatigue I had

> > in the beginning.

> >

> > I was really afraid of Mtx in the beginning too.

> > But I've read a

> > lot about it (and about RA!) since then, and it

> > really is one of the

> > safer RA drugs, and it is effective for a lot of

> > people. The way I

> > see it is that it's a whole less dangerous than the

> > RA is without

> > treatment!

> >

> > Good luck in finding drugs that work well for you!

> >

> >

> >

> >

>

> __________________________________________________

>

[Guest guest]

Hi :

Good for you to keep riding! I'm with you about the

riding - it's the only activity I have left of my

pre-RA life, and I'm not giving up either! Even if it

is just once a week in good weather, that one time is

worth every ache and pain I have later, for the way it

makes me feel " normal " again, if only for a while

....... I just love to ride, it's good for the soul.

That is probably a good move to not reduce your Pred

too quickly if you have that much trouble with it. No

need to suffer any more than you have to. Sorry about

the Enbrel not working better for you, but it could be

that the twice weekly shot will be more effective, so

at least give it a try before moving on to another

med.

I couldn't get along without my pain med either - I

take Ultram ER too. My RA is doing pretty well, the

fibro is flaring, especially in my hips, legs and

ankles. One day maybe both will be in better control,

I sure hope so!

I burned only the right hand, entire top of the right

hand and into the thumb and first finger and down onto

my wrist, not both, thank goodness. It was a stupid

thing - I decided not to ask for help in emptying a

large pot full of boiling water and pasta into the

strainer, and my right hand grip suddenly let go and

it all went pouring over that hand before I could jump

out of the way. It brought back, again, that there

are simply things that I cannot do on my own any

longer, and I need to ask for help or I will hurt

myself. So, a lesson learned the hard way. Watch out

for your aching hands and wrists when you do these

sorts of things too - when in doubt, ask for help.

Take it easy as much as possible, but keep those

really important things in your life, and let the

little stuff go. Take Oliver and your other horse out

to do some weed wacking for you! That is what I do

with mine! Work, your family, and your riding - not

necessarily in that order! - those are the important

things, and I would definately encourage you to not

give up anything else that is meaningful to your soul

and your heart. Sometimes we have to suffer a bit for

the simple pleasures in life, unfortunately.

Take care and good luck with the twice weekly Enbrel -

let us know how that goes - and I hope today is a less

painful one for you -

--- Randall <krandall@...> wrote:

__________________________________________________

[Guest guest]

Dear Michele,

I have had R.A. for 8 months and took 6 Remicade infusions and MTX

(Methotrexate) the MTX made my hair fall out at 12 1/2 a week. At 7 1/2 it

gave no results the Remicade didn't do anything. The rheumey is putting me

on Orencia in 2 weeks. How are you doing with that I hope it helps me. I

will let you know how I do.

None of the other DMARD's sound like I want to take. I tried Sulfasalazine

and after 11 days my face blew up like a ballooon. Had to stop.

I don't want to take MTX as I am growing my hair back after the last

episode.

Good luck with the Orencia!

Sincerely,

Bunny

[Guest guest]

In a message dated 3/26/2007 10:39:53 A.M. Eastern Daylight Time,

michelebrooks04@... writes:

MTX is chemo but I didn't expect my hair to fall out it's a lose/lose

situation isn't it?

yes MTX is a chemo drug and is used for that in higher doses.... fun huh?

************************************** AOL now offers free email to everyone.

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[Guest guest]

Hey Bunny, I used tgo take Remicade for about two and a half years

then it stopped working for me the Orencia is working really well for

me but it did take several months for it to " kick in " so to speak. I

took Methotrexate and my hair broke off about an inch from the scalp

it was quite lovely heehee I am giving myself MTX injections now and

so far nothing's happened with my hair. isn't this a fun disease?

MTX is chemo but I didn't expect my hair to fall out it's a lose/lose

situation isn't it? Thanks for your response I hope we can be

friends, Michele

--- In , " monica pullern " <Eightbunny@...>

wrote:

>

> Dear Michele,

> I have had R.A. for 8 months and took 6 Remicade infusions and MTX

> (Methotrexate) the MTX made my hair fall out at 12 1/2 a week. At

7 1/2 it

> gave no results the Remicade didn't do anything. The rheumey is

putting me

> on Orencia in 2 weeks. How are you doing with that I hope it helps

me. I

> will let you know how I do.

>

> None of the other DMARD's sound like I want to take. I tried

Sulfasalazine

> and after 11 days my face blew up like a ballooon. Had to stop.

>

> I don't want to take MTX as I am growing my hair back after the

last

> episode.

>

> Good luck with the Orencia!

>

> Sincerely,

> Bunny

>

[Guest guest]

If I may ask what amount of dosage are you taking of the MTX?? I

been taken it for the past year, and didnt seem to have a problem

with much hair falling off.

>

>

>

> In a message dated 3/26/2007 10:39:53 A.M. Eastern Daylight Time,

> michelebrooks04@... writes:

>

> MTX is chemo but I didn't expect my hair to fall out it's a

lose/lose

> situation isn't it?

>

>

> yes MTX is a chemo drug and is used for that in higher doses....

fun huh?

>

>

>

>

>

> ************************************** AOL now offers free email

to everyone.

> Find out more about what's free from AOL at http://www.aol.com.

>

>

>

[Guest guest]

The rumeys have just recently up my dosage to 8 pills a week. In

reading somewhere I recall them saying that it takes months for the

MTX to actually work before you feel a difference.

> >

> >

> >

> > In a message dated 3/26/2007 10:39:53 A.M. Eastern Daylight Time,

> > michelebrooks04@ writes:

> >

> > MTX is chemo but I didn't expect my hair to fall out it's a

> lose/lose

> > situation isn't it?

> >

> >

> > yes MTX is a chemo drug and is used for that in higher doses....

> fun huh?

> >

> >

> >

> >

> >

> > ************************************** AOL now offers free email

> to everyone.

> > Find out more about what's free from AOL at http://www.aol.com.

> >

> >

> >