Re: OUCH - Everything hurts AGAIN

[Guest guest]

Hi OKD,

You need to give your self a chance & try Prednisone. Our bodies are so

different that we do not know what will work unless we try. I had to try Embrel,

Prednisone, Lefluimide & now Retuxzin before I got some relief. You will know if

Prednisone is for you if not keep trying the different options we have out

there. Hope you feel better & not fear the MEDS out there for you.

Mousie in Calif.

>

> Hi guys:

>

> Thanks all who answered me. Breakthru pain all weekend, feeling really blue,

angry, then I laugh. Just when I thought I was going into remish - POW - BANG -

Back to pain...

>

> Called pain doc. She says I need something for breakthru pain, cause Fentanyl

patches take HOURS to start working, so she gives me LEVO-DROMORAN?? (anybody

take that?. Not sure what it is, but I am going to try it. Its supposed to

come today. Hate narcs, pills, thats why I opted for patches, but they take a

longgg time to absorb into your body. At least a pill will hit you within 20

mins-1 hour.

>

> Refusing to take prednisone still. There must be a better way than long-term

steriod use.

>

> I was happy the Enbrel was working, I am much better, but I am hurting, I dred

the coming cold winter (its cold a little bit already here in NY).

>

> With the RA its not one spot that hurts, its all over, everywhere I have a

bone and a joint, even my jaw hurts. I want to curse at the disease, but it

wont listen - L0L:)). I know, I know RA is incurable. Even the word Incurable

makes me mad.

>

> Laughing helps though.....whistling/singing " Always look on the bright side of

life " by Monty Python........

>

> the only bone in my body thats not aching is the one I am sitting on!

>

> OKD

>

[Guest guest]

Thank you Barbara, your words are always so comforting when I read them.

Thanks to the others that responded too about the Predni. I know i am going to

have to breakdown for 4 days and take it tonight, cause I the aching is so bad,

I even can't sleep. I did try.

Felled by inflammation, funny thing is that I am not that swollen, but the pain

is THERE.

Well, the " bright side of life " is that at least there is something that brings

the inflammation down forcibly, I hope.

Ugh.....

[Guest guest]

Hi OKD,

I am sorry that you have been going through all of this and hurting so much.  I

know how you feel about the prednisone.  I have been taking it since my first

flare in December '08.  I guess I have a love hate relationship with it because

I know that I would turn to stone without it but oh! the side effects and the

scary long term use stories I have heard about it.

This just had to hit you when you had been feeling better??  That hit home with

me too.  I had seen my rheumy in August when I was on top of the world after

having a great response to MTX after only about 6 weeks of taking it.  I felt

better than great, my energy level was back up and my pain was minor.  My rheumy

and I discussed the 10 mg of Prednisone I was taking daily - I really wanted to

cut back.  He agreed to cutting it down to 7.5 mg daily.  I had visions of one

day being Prednisone free.

Late September / early October I was starting to hurt again.  I left work early

so many times in Ovtober that my coworkers were looking at me first thing in the

morning and asking : " You gonna make it all day? " ,  I stayed home several days

too, hurting too much to barely move.  I had been calling my rheumy regularly

and was first told to go back to 10 mg Prednisone daily - give that about a week

& call back if I was still having problems.  Needless to say, I called back and

was prescribed a Medrol pack.  I felt a bit better when the dosage was high. 

When the dose tapered, my face blew up - my jowls had jowls and my joints were

red, hot, swollen and so very painful.  I called my rheumy again and got an appt

that day to see him (10/26). He upped my Prednisone to 10 mgs daily again,

discontinued the Mobic I was on & put me on Voltaren and increased my MTX from 3

tablets to 4 weekly.  I also got a scrip for Vicodin.  Up until then I had been

toughing it out with no pain meds.  The Vicodin has helped me get through the

day and I take 2 most nights so I can sleep.

 I stll cannot wear my shoes, the only thing I can get on my feet are these Dr.

Scholl slip on things with gel insoles built in.  They are pretty comfortable

but I feel like my feet bones are going to pop out of my skin when I walk. 

Walking is quite a challenge for me, I feel like if this keeps progressing at

the rate it did last month I will be in a wheelchair by May.  Everything hurts

but my ankles & feet are getting hit the hardest.

  My doctor says he is going to get me through this and I wil feel better again

one day.  That is my prayer for you and everyone here.  Incurable makes me mad

too - I am opting to think  that it's not incurable - they just haven't figured

out how to do it yet.  Maybe that is naiive but it gets me by.

Take care,

Connie

From: OKD <Cofade_2000@...>

Subject: [ ] OUCH - Everything hurts AGAIN

Date: Wednesday, November 4, 2009, 12:53 PM

 

Hi guys:

Thanks all who answered me. Breakthru pain all weekend, feeling really blue,

angry, then I laugh. Just when I thought I was going into remish - POW - BANG -

Back to pain...

Called pain doc. She says I need something for breakthru pain, cause Fentanyl

patches take HOURS to start working, so she gives me LEVO-DROMORAN? ? (anybody

take that?. Not sure what it is, but I am going to try it. Its supposed to

come today. Hate narcs, pills, thats why I opted for patches, but they take a

longgg time to absorb into your body. At least a pill will hit you within 20

mins-1 hour.

Refusing to take prednisone still. There must be a better way than long-term

steriod use.

I was happy the Enbrel was working, I am much better, but I am hurting, I dred

the coming cold winter (its cold a little bit already here in NY).

With the RA its not one spot that hurts, its all over, everywhere I have a bone

and a joint, even my jaw hurts. I want to curse at the disease, but it wont

listen - L0L:)). I know, I know RA is incurable. Even the word Incurable makes

me mad.

Laughing helps though.....whistlin g/singing " Always look on the bright side of

life " by Monty Python...... ..

the only bone in my body thats not aching is the one I am sitting on!

OKD

[Guest guest]

OKD...

I know how you feel. I am just going through another flare. Fentanyl Patches

ARE a narcotic. It is long acting and gives a steady dose of Fentanyl while you

are wearing the patch. One thing about the patches, get the brand name

(Duragesic). The MD needs to write " brand necessary " in order for your

insurance to not charge a high copay (they will charge the brand copay as

opposed to making you pay even higher. If the MD says you need the brand they

can't charge anymore than the brand name copay). The generic does absolutely

NOTHING! I do recommend the patches. You can get something to get you through

the first day or so the patch is getting in to your system, but once it starts,

you will love it!

I just posted about my flare up. I didn't mention it but I am also itching

where I am swollen. I suspect that has to do with the skin stretching so much.

Take the prednisone. It will get you out of this flare you are in. In about 24

hours of taking it, the pain will be significantly better! I still hurt, but

nothing like I did prior to taking the steroids. You don't want to take it long

term, that is why the DMARDS are so much better for you.

Feel better!!!

Robin

>

> Hi guys:

>

> Thanks all who answered me. Breakthru pain all weekend, feeling really blue,

angry, then I laugh. Just when I thought I was going into remish - POW - BANG -

Back to pain...

>

> Called pain doc. She says I need something for breakthru pain, cause Fentanyl

patches take HOURS to start working, so she gives me LEVO-DROMORAN?? (anybody

take that?. Not sure what it is, but I am going to try it. Its supposed to

come today. Hate narcs, pills, thats why I opted for patches, but they take a

longgg time to absorb into your body. At least a pill will hit you within 20

mins-1 hour.

>

> Refusing to take prednisone still. There must be a better way than long-term

steriod use.

>

> I was happy the Enbrel was working, I am much better, but I am hurting, I dred

the coming cold winter (its cold a little bit already here in NY).

>

> With the RA its not one spot that hurts, its all over, everywhere I have a

bone and a joint, even my jaw hurts. I want to curse at the disease, but it

wont listen - L0L:)). I know, I know RA is incurable. Even the word Incurable

makes me mad.

>

> Laughing helps though.....whistling/singing " Always look on the bright side of

life " by Monty Python........

>

> the only bone in my body thats not aching is the one I am sitting on!

>

> OKD

>