Its been going on for about 6 or 8 weeks now and I guess I just can't deny
it anymore. My ankles, hips, elbows and shoulders are all hurting - bad.
And all the time. Swollen and red. Sometimes itchy. My ankle was so swollen
when I last saw the RD on the 16 of Dec she sent me for x-rays to make sure
the left one wasn't fractured first and then she was going to inject me.
Don't you know the swelling went down on it's own. No fracture. But both
hips had fractures in the pelvic bone and the left on had narrowing of the
joint space. That explains the pain I was having in my hips now wouldn't
you say? And then the shoulders. Oh my -- they are making the worst
grinding and rubbing sounds when I move them in certain positions. Like when
I'm brushing my teeth or any kind of movement crossing the chest. Sometimes
it feels like its rubbing the collar bone on the right side. You can hear it
across the room. This cannot be good! I don't want to stop moving them cause
I have heard of people who's shoulders freeze up on them. Don't want that.
I keep thinking its the weather, its the abscess tooth which is getting
pulled on the 4th or too much walking or any other excuse I can think of but
the bottom line is that Enbrel just isn't doing a damn thing for me anymore.
Maybe I should try 3 shots a week again and see what happens. I did that
back in the beginning for a while and that worked out well. Or maybe the
Forteo just doesn't agree with RA. I started Forteo in June and things have
been going downhill since then. Any ideas on that?
2004 was a really bad year. Too many fractures. Too much pain. Too much
medicne. And it's like nothing is making anything any better. I guess I'll
go to bed before I complain any more. Thanks for listening.

Signature
Cyberhugs,
DianeW
It is only with the heart that one can see rightly; what is essential
is invisible to the eye. --Antoine de Saint Exup?ry
Janet R - 03 Jan 2005 05:58 GMT
{{{{{{Diane}}}}}}}....
Maybe it's time for a sit down with the RD for better control? I know
the shoulder pain (grinding, freezing, popping)....Maybe some ice will
help?
I wish I could help you with all your other aches and ohhhh.....some
more gentle hugs in the interim....
Janet R
| Its been going on for about 6 or 8 weeks now and I guess I just can't deny
| it anymore. My ankles, hips, elbows and shoulders are all hurting - bad.
[quoted text clipped - 22 lines]
| medicne. And it's like nothing is making anything any better. I guess I'll
| go to bed before I complain any more. Thanks for listening.
johnie - 03 Jan 2005 07:06 GMT
{{{{{{{{{{{{{{{diane}}}}}}}}}}}}}, enuff is enuff. i wish it was the
'forteo'. you could fix that. a combo of problems sounds like the
culprit. i betcha when that tooth goes your symptoms go with it.
start feeling better soon...
johnie
> Its been going on for about 6 or 8 weeks now and I guess I just can't deny
> it anymore. My ankles, hips, elbows and shoulders are all hurting - bad.
[quoted text clipped - 22 lines]
> medicne. And it's like nothing is making anything any better. I guess I'll
> go to bed before I complain any more. Thanks for listening.
DeeTee and Bob Taggart - 03 Jan 2005 13:55 GMT
{{{{{Diane}}}}}
DeeTee
________________________________
DeeTee and Bob Taggart
http://www.marykay.com/dtaggart3
http://mysite.verizon.net/vze8fwov/
________________________________
> Its been going on for about 6 or 8 weeks now and I guess I just can't
> deny it anymore. My ankles, hips, elbows and shoulders are all hurting -
[quoted text clipped - 23 lines]
> medicne. And it's like nothing is making anything any better. I guess
> I'll go to bed before I complain any more. Thanks for listening.
Nann Bell - 03 Jan 2005 14:39 GMT
((((((((((((((((Di))))))))))))))))
you're right about the shoulder - keep moving it enough to keep it from
freezing. My DH had frozen shoulder and the pain and movement restriction
was incredible. That shoulder still isn't all the way back. I can see the
difference when he's swimming.
Talk to your RD about trying 3 shots/week - I know it's helped a number of
folks. I surely hope 2005 is a better year for you.

Signature
Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare
DiWitt - 04 Jan 2005 04:42 GMT
Nann - I did three shots a week about the second or third month I was on
Enbrel. Might be a good idea to try that again while I'm starting the
Arava. Thanks.

Signature
Cyberhugs,
DianeW
It is only with the heart that one can see rightly; what is essential
is invisible to the eye. --Antoine de Saint Exup?ry
> ((((((((((((((((Di))))))))))))))))
>
[quoted text clipped - 6 lines]
> Talk to your RD about trying 3 shots/week - I know it's helped a number of
> folks. I surely hope 2005 is a better year for you.
Mary Z - 03 Jan 2005 15:21 GMT
> I did that
>back in the beginning for a while and thatworkedoutwell.Ormaybethe
>Forteo just doesn't agree with RA. I started Forteo in June and things have
>been going downhill since then. Any ideas on that?
Forteo has been out for a little while and there are probably quite a
few folks who are on E and Forteo. I think you have E fade out and
you need a change in Rx. When will you be trying out the new MS drug?
It sounds really promising for RA as well. Hope you are taking the new
drug soon. -- MZ
Visit my website:
http://www.mzuschlag.com
DiWitt - 03 Jan 2005 16:00 GMT
There seems to be a lack of enthusiasm from the insurance company on paying
the 1800 per infusion for it. Also, with it only being tested for one year,
my neuro wants to know what happens when folks stop taking it. In a
nutshell, it holds something back from crossing the brain-blood barrier and
there is a thought that if you stop the med there will be an onslought of
the (T-cells I think it is) when the medicine induced barrier is no longer
there when you stop the medicine and it could have catastrophic effects. So
knowing that, I thinik I would like to see the "exit" data as it were before
I switch to it. So....I'm sort of stuck with enbrel for now. After my tooth
is pulled and the infection is cleared up I am going to go back on arava
and see how I do then. Remicade is contra-indicated with MS. Don't really
know about the others cause we haven't needed them.. :(

Signature
Cyberhugs,
DianeW
It is only with the heart that one can see rightly; what is essential
is invisible to the eye. --Antoine de Saint Exup?ry
>
>> I did that
[quoted text clipped - 11 lines]
> Visit my website:
> http://www.mzuschlag.com
Mary Z - 04 Jan 2005 02:36 GMT
> Also, with it only being tested for one year,
>my neuro wants to know what happens when folks stop taking it. In a
[quoted text clipped - 4 lines]
>knowing that, I thinik I would like to see the "exit" data as it were before
>I switch to it. So....I'm sort of stuck with enbrel for now
Darn sounds like a bummer! I thought this new one might be a magic
bullet. Have you discussed Humira? Combination therapy worked much
better for me. -- MZ
Visit my website:
http://www.mzuschlag.com
melodymom - 03 Jan 2005 21:31 GMT
{{{{{{{{{Diane}}}}}}}}}
Denise
> Its been going on for about 6 or 8 weeks now and I guess I just can't deny
> it anymore. My ankles, hips, elbows and shoulders are all hurting - bad.
[quoted text clipped - 22 lines]
> medicne. And it's like nothing is making anything any better. I guess I'll
> go to bed before I complain any more. Thanks for listening.
Jean - 03 Jan 2005 22:38 GMT
So sorry to hear that Diane. :-( I've been particularly bad the last week
or so also with hips, knees and back screaming all the time. Knock on wood,
the shoulders have been okay and that's what normally gets bad. (And they
have both frozen before and trust me, you do NOT want that to happen.)
Maybe it's the time of year that's causing this? Or the weather? Last week
it was snowing and 30 degrees and today it's humid and 80!!! Ahhh Houston
... gotta love it. ;-)
Hope you are as pain free as you can be VERY soon!!!
Jean
> Its been going on for about 6 or 8 weeks now and I guess I just can't
> deny it anymore. My ankles, hips, elbows and shoulders are all hurting -
[quoted text clipped - 23 lines]
> medicne. And it's like nothing is making anything any better. I guess
> I'll go to bed before I complain any more. Thanks for listening.
Caroline Marold - 03 Jan 2005 23:01 GMT
Oh Diane. None of that sounds good at all. Gentle hugs.
Don't forget you can whine to us anytime you get the
energy. Have you looked at Humira?
Duckie
> Its been going on for about 6 or 8 weeks now and I guess I just can't deny
> it anymore. My ankles, hips, elbows and shoulders are all hurting - bad.
[quoted text clipped - 22 lines]
> medicne. And it's like nothing is making anything any better. I guess I'll
> go to bed before I complain any more. Thanks for listening.

Signature
_('>
(_<_)
_
_('< -quack
(_<_)
_
__('< *QUACK!*
<_{__)
_('< "|,,|_"
(_<_)
_('< "AFLAC!"
(_<_)
DiWitt - 04 Jan 2005 04:40 GMT
No, haven't looked at Humira. Enbrel was still working when it first came
out and dr hasn't mentioned it. If it is similar to remicade, that may be
why. When they tested remicade on MS patients after 6 weeks they had an
increase in lesions in the brain and stopped the trial. Don't know if they
ever tested Humira on MS patients.
Just about time to start the fast for tomorrow's tooth pulling. Gonna get a
nice IV full of drugs for it and he gives me a nice IV of steroids at the
end as well. So if nothing else, that should help for a while. I think it's
called deca-something. Equals about 500mg of IV solumedrol last time I
figured it out. NICE! At least I've got something to look forward to!
I'll be back online tomorrow night I guess. Thanks for the support!

Signature
Cyberhugs,
DianeW
It is only with the heart that one can see rightly; what is essential
is invisible to the eye. --Antoine de Saint Exup?ry
> Oh Diane. None of that sounds good at all. Gentle hugs. Don't forget you
> can whine to us anytime you get the energy. Have you looked at Humira?
[quoted text clipped - 27 lines]
>> medicne. And it's like nothing is making anything any better. I guess
>> I'll go to bed before I complain any more. Thanks for listening.
Nann Bell - 04 Jan 2005 14:39 GMT
According to humira.com, "HUMIRA is the first human monoclonal antibody
approved for RA." Makes me think it's closer to Enbrel than to Remicade,
though I don't know for sure what the issues are with your overlapping MS.
Judging by drugstore.com's quoted prices, 3 shots/week of Enbrel would cost
as much as the new MS drug. So, if you get them to approve the former and
the latter turns out to be viable, it might make it easier to talk the
insurance into a switch! hehe.
It's probably Decadron you'll get with the tooth-pulling. They give it to me
when I have major reactions to allergy testing. I hope the tooth-pulling and
recovery goes well, and I'm still hoping that abcessed tooth has a lot to do
with your flare!

Signature
Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare
> No, haven't looked at Humira. Enbrel was still working when it first came
> out and dr hasn't mentioned it. If it is similar to remicade, that may be
[quoted text clipped - 8 lines]
> figured it out. NICE! At least I've got something to look forward to!
> I'll be back online tomorrow night I guess. Thanks for the support!
Janet R - 04 Jan 2005 20:03 GMT
Can I have some of that too?
Wonder Woman
"DiWitt" <diwitt@cfl.rr.NOSPAM.com> wrote in message
<snippage>
| Just about time to start the fast for tomorrow's tooth pulling. Gonna get a
| nice IV full of drugs for it and he gives me a nice IV of steroids at the
| end as well. So if nothing else, that should help for a while. I think it's
| called deca-something. Equals about 500mg of IV solumedrol last time I
| figured it out. NICE! At least I've got something to look forward to!
| I'll be back online tomorrow night I guess. Thanks for the support!
AudieB68 - 05 Jan 2005 02:28 GMT
so sorry about the pain. i have been on just about every med there is and
nothing helps me either. now i am on humira and oxycontin.i am in constant
pain. sometimes it brings the tears. i hope you find something to ease the
pain. my shoulders are all deteriated and the dr says i cant be operated on
because of my condition. i hope he changes his mind. God Bless, audie
Squirrely - 05 Jan 2005 02:49 GMT
Diane W,
I am so sorry to hear you are flaring so bad. i hope it stops soon for you.
I hope you get that abscess tooth taken care of soon. I hope that will stop
alot of the pain. When you have an infection, it makes all worse.
If you need to vent more, you can email me if you would like. I am here.

Signature
Love and hugs to all
Good thoughts coming your way too.
Squirrely Jo
> Its been going on for about 6 or 8 weeks now and I guess I just can't deny
> it anymore. My ankles, hips, elbows and shoulders are all hurting - bad.
[quoted text clipped - 22 lines]
> medicne. And it's like nothing is making anything any better. I guess I'll
> go to bed before I complain any more. Thanks for listening.