Re: haven't been around much lately

[Guest guest]

...

Good you are feeling better enough to post.

I like docs who aren't such a big fan of prednisone and that your doc

is interested in weaning you from it. I am usually the one who

brings that up in my docs office. I prefer not to use it at all but

if understand it is sometimes needed to bring inflammation under

control. I really believe it's why my hips need replacing so soon,

that and enbrel would give the hips a searing pain to crazy to

describe with each injection. I used to call enbrel liquid

prednisone. LOL!

Of course we can totally understand you needing to be away during

flares and painful times. Just missed your input. Take gentle care.

peace,

Ebony

>

> I haven't been able to keep up with my emails for a while, just

wanted to

> stop by and hi and hope everyone is doing better.

>

> Once again, as soon as I started feeling better, my rheumy decided

it was

> time to adjust my meds. We're trying to wean me off the

prednisone, but

> every reduction means a few weeks of feeling bad until my body gets

> adjusted. This time, he also took me off my Trazadone and lowered

my

> Celexa. My eyes were dry enough that he worried about a corneal

abrasion,

> and felt that it might be those meds causing it. My eyes are much

better,

> but I just had my first good nights sleep in over a month! I was

taking the

> Trazadone for a sleep aid and for pain. This is also the first day

I have

> felt like doing anything normal. I've been very tired, achy, and

depressed

> - the fibro has taken over. Well, apathetic and listless, not

caring much

> about anything. And enveloped in the fibro fog!

>

> This is the one group I feel like I can explain my absence to, and

be

> understood. thanks for being here, for all the support.

> Gentle hugs,

>

>

> South Pasadena, CA

> See my galleries! - http://www.pbase.com/arenared986

>

>

>

[Guest guest]

Hi :

I, too, have been enveloped in that painful fibro fog

mess! Are you taking any meds for your fibro? I take

muscle relaxants, nerve pain meds, sleep med, and pain

med. I have a lot of pain in my legs on a daily

basis, especially near my hip area and down into my

shins.

Icy Hot helps, but it is the nerve pain meds that have

really been of help to me. Fibro causes sleep

problems. Have you had a sleep study done? That

found that I have obstructive sleep apnea and I now

use CPAP which allows me to breathe better and sleep

better. Also Ambien CR and Zanaflex before bedtime

help lots.

I take an antidepressant for both depression and pain

relief - Cymbalta. Maybe you could bring some of

these meds up to your doctor.

I understand you doctor wanting to wean you off the

Pred - you don't want to take it for too long - but it

does take adjustment from your body with each drop of

the Pred - more pain. I hope that you are able to get

off of it without too much pain cropping up again.

What other meds are you on? I am glad that your eyes

have improved - I have dry eyes too and sometimes they

blur up, and I use a steroid ointment at night for

about a week, and that clears it up. Normally I just

use Systane Free eye lubricant - it works great -

several times a day.

Hope that this is a less painful day for you and the

fibro gives you a break. Take care - prayers coming

your way -

Kathe in CA

--- Overell <patricia.overell@...>

wrote:

> I haven't been able to keep up with my emails for a

> while, just wanted to

> stop by and hi and hope everyone is doing better.

>

> Once again, as soon as I started feeling better, my

> rheumy decided it was

> time to adjust my meds. We're trying to wean me off

> the prednisone, but

> every reduction means a few weeks of feeling bad

> until my body gets

> adjusted. This time, he also took me off my

> Trazadone and lowered my

> Celexa. My eyes were dry enough that he worried

> about a corneal abrasion,

> and felt that it might be those meds causing it. My

> eyes are much better,

> but I just had my first good nights sleep in over a

> month! I was taking the

> Trazadone for a sleep aid and for pain. This is

> also the first day I have

> felt like doing anything normal. I've been very

> tired, achy, and depressed

> - the fibro has taken over. Well, apathetic and

> listless, not caring much

> about anything. And enveloped in the fibro fog!

>

> This is the one group I feel like I can explain my

> absence to, and be

> understood. thanks for being here, for all the

> support.

> Gentle hugs,

>

>

> South Pasadena, CA

> See my galleries! - http://www.pbase.com/arenared986

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Kathe, I do hope your hand continues to heal! So far, I have been very

lucky and haven't done anything too terrible to myself. I try to be very

careful - but some days, I'm just fumbled-fingered and clumsy. Your

daughter sounds like a dear.

I've talked to both my rheumy and my PCP, and they both think lack of sleep

is my biggest problem. I'm exhausted, but can't get to sleep, then wake up

every couple of hours because I need to change position, and rearrange my

pillow collection - one for between the knees, one for under the arm, etc.

And I'm hot! Something has thrown my temperature regulating mechanism off,

I used to be the one who wore a sweater unless it was 80 outside, now I'm

always hot and sweating, even when it's cool.

Right now, I don't have a lot of acute pain, just tired and achey, like I

have the flu. Mostly my upper back and shoulders. I'm just disappointed

because I felt so good when I started the Humira, then to have the aches

come back so soon when the other meds were reduced . . .I desperately want

to get off the prednisone, I've been taking it for over two years now, and

have had most of the side effects. But every step of the weaning process

has been difficult, it seems to take my body a month or more to adjust to

the lower dose, and just when I start to feel ok again, it's time for the

next reduction.

My PCP is running some tests, they use urine and saliva, collected over the

course of a day, to check out hormone levels and serotonin levels. She

thinks low serotonin levels may be more of a problem than fibro right now,

if the tests show what she thinks they will, she will put me on a new med -

and of course, I've totally forgotten it's name. She's also started me on a

very low dose of estrogen, thinking that might be part of the problem. I

was on the estrogen patches until I had a (benign, but possible

pre-cancerous) lump removed from my breast last Feb. and had to quit using

them, this is supposed to be a much lower dosage. I love all of my docs,

especially the way they work together, sending each other notes to keep them

updated. So everyone knows what I'm taking, and what side effects I've

noticed. Makes me feel good that their approaches are coordinated!

Take care, no more accidents!

Gentle hugs,

On 9/12/06, Kathe Sabetzadeh <lv2ryd@...> wrote:

>

> Hi :

>

> I, too, have been enveloped in that painful fibro fog

> mess! Are you taking any meds for your fibro? I take

> muscle relaxants, nerve pain meds, sleep med, and pain

> med. I have a lot of pain in my legs on a daily

> basis, especially near my hip area and down into my

> shins.

> Icy Hot helps, but it is the nerve pain meds that have

> really been of help to me. Fibro causes sleep

> problems. Have you had a sleep study done? That

> found that I have obstructive sleep apnea and I now

> use CPAP which allows me to breathe better and sleep

> better. Also Ambien CR and Zanaflex before bedtime

> help lots.

> I take an antidepressant for both depression and pain

> relief - Cymbalta. Maybe you could bring some of

> these meds up to your doctor.

>

> I understand you doctor wanting to wean you off the

> Pred - you don't want to take it for too long - but it

> does take adjustment from your body with each drop of

> the Pred - more pain. I hope that you are able to get

> off of it without too much pain cropping up again.

> What other meds are you on? I am glad that your eyes

> have improved - I have dry eyes too and sometimes they

> blur up, and I use a steroid ointment at night for

> about a week, and that clears it up. Normally I just

> use Systane Free eye lubricant - it works great -

> several times a day.

>

> Hope that this is a less painful day for you and the

> fibro gives you a break. Take care - prayers coming

> your way -

>

> Kathe in CA

>

>

>

>

>

> --- Overell <patricia.overell@...>

> wrote:

>

> > I haven't been able to keep up with my emails for a

> > while, just wanted to

> > stop by and hi and hope everyone is doing better.

> >

> > Once again, as soon as I started feeling better, my

> > rheumy decided it was

> > time to adjust my meds. We're trying to wean me off

> > the prednisone, but

> > every reduction means a few weeks of feeling bad

> > until my body gets

> > adjusted. This time, he also took me off my

> > Trazadone and lowered my

> > Celexa. My eyes were dry enough that he worried

> > about a corneal abrasion,

> > and felt that it might be those meds causing it. My

> > eyes are much better,

> > but I just had my first good nights sleep in over a

> > month! I was taking the

> > Trazadone for a sleep aid and for pain. This is

> > also the first day I have

> > felt like doing anything normal. I've been very

> > tired, achy, and depressed

> > - the fibro has taken over. Well, apathetic and

> > listless, not caring much

> > about anything. And enveloped in the fibro fog!

> >

> > This is the one group I feel like I can explain my

> > absence to, and be

> > understood. thanks for being here, for all the

> > support.

> > Gentle hugs,

> >

> >

> > South Pasadena, CA

> > See my galleries! - http://www.pbase.com/arenared986

> >

> >

>

--

South Pasadena, CA

See my galleries! - http://www.pbase.com/arenared986

[Guest guest]

Boy, it sounds like exactly what has been happening to me! I was so

thrilled when the Embrel seemed to be really helping, but as soon as

we started weaning the prednisone again, I started having more

trouble. I went from 15mg, to 12.5 for a month which was not TOO

bad, to now I've been on 10 for 3 weeks and am absolutely miserable

still.

The current plan is that after I've been on 10 for a full month, I'm

supposed to start decreasing by just 1mg per month from then on.

But if I never get on an even keel at 1mg, I'm afraid of what a

further reduction will bring.

I REALLY want to get off the prednisone. I haven't been on it as

long as you have, but I've been on it since January, and have gained

25 pounds since then. I haven't had any other serious problems from

it yet, but I don't want to get them either!

OTOH, my quality of life right now is pretty miserable, and at this

rate of reduction, it's going to take me 10 more months to be off

the stuff. I'm not serious, and I know you can't do this, but

sometimes I wish it were safe to just stop " cold turkey " and get it

over with, even if it meant I was going to feel REALLY terrible for

a couple of weeks!

Then I was talking to my new " case manager " nurse who is assigned by

my health care plan, and she told me that some people have to take

prednisone indefinitely to control their RA, even with other drugs.

I'd heard of that, but the people I'd heard of doing that were

taking really small doses, like 2-5mg daily, not 15 (which is where

I've been comfortable) She said that there are people who end up

taking that much long term, that anything under 20mg was

considered " low dose " , and that although it was best not to need

any, when you were balancing quality of life vs. the meds, sometimes

you just need to take the prednisone.

So now I don't know what to think.

> >

> > > I haven't been able to keep up with my emails for a

> > > while, just wanted to

> > > stop by and hi and hope everyone is doing better.

> > >

> > > Once again, as soon as I started feeling better, my

> > > rheumy decided it was

> > > time to adjust my meds. We're trying to wean me off

> > > the prednisone, but

> > > every reduction means a few weeks of feeling bad

> > > until my body gets

> > > adjusted. This time, he also took me off my

> > > Trazadone and lowered my

> > > Celexa. My eyes were dry enough that he worried

> > > about a corneal abrasion,

> > > and felt that it might be those meds causing it. My

> > > eyes are much better,

> > > but I just had my first good nights sleep in over a

> > > month! I was taking the

> > > Trazadone for a sleep aid and for pain. This is

> > > also the first day I have

> > > felt like doing anything normal. I've been very

> > > tired, achy, and depressed

> > > - the fibro has taken over. Well, apathetic and

> > > listless, not caring much

> > > about anything. And enveloped in the fibro fog!

> > >

> > > This is the one group I feel like I can explain my

> > > absence to, and be

> > > understood. thanks for being here, for all the

> > > support.

> > > Gentle hugs,

> > >

> > >

> > > South Pasadena, CA

> > > See my galleries! - http://www.pbase.com/arenared986

> > >

> > >

> >

>

>

>

> --

>

> South Pasadena, CA

> See my galleries! - http://www.pbase.com/arenared986

>

>

>