Re: Progression of RA.... I hate this disease

August 29, 2008

YES KAMI I'M GOING THROUGH THAT RIGHT NOW. IT SUX!!!!!!!!!!!! MY RIGHT HAND AS

WELL & I DON'T C MY RHEUMMY TILL ANOTHER MONTH.

I'M SORRY FOR ALL U R GOING THROUGH BUT TRY TO HANG IN THERE KAMI. DO U KNOW THE

SONG I WILL SURVIVE? WE R SURVIVORS GIRL!

I TAKE FORTEO INJECT. IT HELPS ME ALOT MAYB ASK YOUR DR. ABOUT THAT TREATMENT..

U WILL BEAT IT! TAKE CARE & GOD BLESS.

I'M HERE IF EVER U NEED TO VENT! MELYNDAGAMEZ 8/29/08 8:40P.M.CT

[ ] Progression of RA.... I hate this disease

Hello everyone! :-) I hope everyone is having a great day and an even

better weekend! Welcome new members. My name is Kami and I am 38 years

young and live in PA. My road to diagnosis started on my 38th birthday

last year with a case of scleritis. I used to think... " Wow! My

birthday SUCKED! " however I am now in the frame of mind that getting

scleritis MIGHT have been the best bday present ever because it led to

the formal diagnosis and treatment of RA. Okay now that I've gotten

all warm and fuzzy.... I neeed to vent a bit about the beast called RA.

I cannot believe the rapid progression I am seeing of this disease. I

FINALLY get on the right track with meds (8 MTX per week and Humira

every other week) and am thrown a curve. HA! I made a pun. The curve I

have been thrown is actually the curving of my right fingers away from

the thumb, otherwise known as ULNAR DRIFT.

So I am at the doctor yesterday and we are busy talking about my quasi-

success with Humira (it helps but doesn't last 2 weeks)and we decide

to give it another month before trying weekly yada,yada,yada when he

decides to look at my hands. I have been having alot of problems with

my right hand strengthwise and swelling so I hold up my hands and he

says " Your hands have changed dramatically over 6 weeks " I am

like... " well yeah I can't do this and that blah blah " and it occurs

to me.....He is really concerned about this! So he showed me what

concerned him... the drifting of my fingers away from the thumb.

Apparently, I didn't have it 6 weeks ago. WTF? I can't believe how

fast this crap happens! He tried to talk me into having a brace made

and I was like um.... Can't I give the Humira a bit more time to see

if it stops??? So.... He agreed to give me a month and then I will

probaby have another MRI (had one in Feb) to see what, if any, changes

have happened.

Has anyone else experienced anything similar? I swear evry day is

something new with this disease.... I cannot wait to tame this beast!

On another note... Anyone injecting Humira WEEKLY? I would love to

talk to you!

Take care everyone!

Kami

------------------------------------

August 29, 2008

Hi Kami,

I am on my second try with Humira, along with mtx. I did try the

weekly Humira a couple of years ago. It worked for awhile, and then

just stopped, the story of my life. I am very sorry to hear about

the progression in your hand. I've been having the same problem in

my fingers, toes, and elbow. I can't even pick anything up, because

of my elbow. It's very frustrating, and I don't know what to do

anymore. But, I suppose just keep taking it, or it can get EVEN

worse. The brace might help you. Take care of yourself, and I'm

here if you need to talk, Tawny

>

> Hello everyone! :-) I hope everyone is having a great day and an

even

> better weekend! Welcome new members. My name is Kami and I am 38

years

> young and live in PA. My road to diagnosis started on my 38th

birthday

> last year with a case of scleritis. I used to think... " Wow! My

> birthday SUCKED! " however I am now in the frame of mind that

getting

> scleritis MIGHT have been the best bday present ever because it led

to

> the formal diagnosis and treatment of RA. Okay now that I've gotten

> all warm and fuzzy.... I neeed to vent a bit about the beast called

RA.

>

> I cannot believe the rapid progression I am seeing of this disease.

I

> FINALLY get on the right track with meds (8 MTX per week and Humira

> every other week) and am thrown a curve. HA! I made a pun. The

curve I

> have been thrown is actually the curving of my right fingers away

from

> the thumb, otherwise known as ULNAR DRIFT.

>

> So I am at the doctor yesterday and we are busy talking about my

quasi-

> success with Humira (it helps but doesn't last 2 weeks)and we

decide

> to give it another month before trying weekly yada,yada,yada when

he

> decides to look at my hands. I have been having alot of problems

with

> my right hand strengthwise and swelling so I hold up my hands and

he

> says " Your hands have changed dramatically over 6 weeks " I am

> like... " well yeah I can't do this and that blah blah " and it

occurs

> to me.....He is really concerned about this! So he showed me what

> concerned him... the drifting of my fingers away from the thumb.

> Apparently, I didn't have it 6 weeks ago. WTF? I can't believe how

> fast this crap happens! He tried to talk me into having a brace

made

> and I was like um.... Can't I give the Humira a bit more time to

see

> if it stops??? So.... He agreed to give me a month and then I will

> probaby have another MRI (had one in Feb) to see what, if any,

changes

> have happened.

>

> Has anyone else experienced anything similar? I swear evry day is

> something new with this disease.... I cannot wait to tame this

beast!

>

> On another note... Anyone injecting Humira WEEKLY? I would love to

> talk to you!

>

> Take care everyone!

>

> Kami

>

August 29, 2008

Kami

No doubt about it RA is tough to nail down. Never really knowing from one day to

the next just how things will be, it can be very depressing at times. Seems we

go along fine for awhile then wake up one morning and there's a change we can

see, feel or both. Like I've said before, it's much like RA tapping on the

shoulder saying " hey, don't forget about me " .

On your question....

" On another note... Anyone injecting Humira WEEKLY? I would love to

talk to you! "

I started Humira 08/04/04 and it worked great for me till 09/06/06 when I

started the once weekly try. ly taking it every week didn't seem to do much

for me. On 12/13/06 my Dr started me on Arava 20mg daily as well. By 01/31/07 I

went back to once every two weeks with the Humira and Arava daily.

Everyone is different but you might think about adding something rather than

doubling up on the Humira, just another option.

Judy in OK

August 30, 2008

Hi Kami,

Sorry to hear of your recent troubles.

Just a brief comment/ suggestion about your hands. I think that mechanical help

can and should go alongside the meds to protect against long term

changes,earlier rather than later. From my experience a soft individually

moulded resting 'splint', worn at night might help. It would hold the hand and

wrist in a good position for function in the day to come . Don't forget our

limbs take up different, somtimes undesirable positions when asleep, and that is

some hours each day! It should be a time for rest and healing!

Tendons are pulling on the fingers to cause that drift,the wrist often goes

forward too. and power in the hand will be much less even if it is temporary, it

will add to pain and poor function.

Just an impression but I think in these days of great medical drug advances, the

other aspects Physio/OT foot orthotic, mechanical aspects are not considered

so important early,but it is too late if irreversible damage has occurred. The

orthopedic surgeons seem more aware earlier!! Prevention is better than cure!

Physio assessment does not just mean 'exercises' alone. The team approach is a

good one.

Sorry to have stood on a soap box. I did a rheumy internship many moons ago.

My friend with Ra also suffers these problems.

Good luck,

retired doc UK

From: ~Kami~ <kamilleon@...>

Subject: [ ] Progression of RA.... I hate this disease

Date: Saturday, 30 August, 2008, 2:15 AM