Re: Re: Can anyone help or advise please?.........My first post.

[Guest guest]

 Graham,

    This is my first post to the group. Like Missie, I am in the same boat as

your wife.   I have RA for at least 15 years.   And have " out grown " many

medications as they do not work anymore.  Placquenil, enbrel, Cimzia.  I

thought

I finally found the the perfect one in Cimzia when I started in the trail

earlier in the year as it stopped the pain within a few weeks.   But recently

the pain come back again fiercely, so I was started on methortrexate about a

month ago with the Cimzia and prednisione.  I have been on prednisone last 2 to

3 years daily with  lots of calcium and vitamin D.  My goal is to get off

prednisone completely.  Unfortunately, the pain increased expecially in my feet

and legs so much so that I could not tolerate a blanket on them at night.  And

within the last 2 weeks my toes have become disfigured sliding toward the outer

part of my foot.  If I didn't think I was in trouble with this disease before I

do now.  Ibuprophen, percocet does not help when I have the pain.  It makes me

sleepy but does nothing else.  I finally fall asleep around 7 am exhausted and

sleep till 11 am when I have the luxery of not working.  Thankfully, my job has

decreased to 2 days a week for a few hours because we are in a slow period.  I

am afraid if the job's hours pick up I will not be able to fulfill my

responsibilities. Doctor does not want me to take for than 1/2 pill of percocet

right now so that we can tell which joints are being effected.   He is afraid

with complete pain relief I will damage more joints.  I can understand that

because years ago I did that with prednisone with Osteoarthritis in my knee. 

The prednisone completely masked damage I was doing to the knee and when I came

off of it.....boy was there pain....I had to have arthroscopic surgery to remove

arthritis and bone chips.  Eventually I will have knee replacements.

Well yesterday I had my appointment with the rheumatologist again we both agreed

that Cimzia was doing nothing for me anymore and he is starting me on Rituxan as

soon as my insurance approves it.  I think he was shocked at the condition of

my

feet.  He tells me most of my joints are swollen and the RA is worse

ever.  Funny thing is that my perception of my swollen joints are " normal "

because I have had swollen joints for so long. I tell if there is an

exacerbation by the pain level. He tells me that it will take between 2 to 3

weeks to get approval.  I am to continue with methotrexate. and he took me of

prednisone and put me on a stronger steroid (Medrol dose pack) for a few days

and I am to start my previous dose of prednisone after that.

I am hoping the Rituxan works and and I never grow out of another RA med

again.   It is an ongoing battle and like Missy I WANT MY LIFE BACK . If that

means another medication fails   I will probably try a new one.  Losing weight

helps but it is hard to lose weight when you have a sedentary lifestyle as I do

right now.  Right now I am so frustrated with this disease that I am depressed,

but I have to keep on trying.

Let your wife know she is not alone in the fight against this disease.   Keep

on

trying to fight the good fight.

To the group,  I am so happy to have found you.  It gives me some emotional

support when I need it.

Janice

[Guest guest]

God bless you Janice, you are truely a fighter. we get tired and

discouraged trying so many different meds, ... when one stops working

then go on to another one. my dr. said he has run out of options with

me, just giving me something for the pain now. you know, after awhile

they stop working too. right now i'm on oxycontin 40gm, every 12 hrs.

, then lortab10mg every 6 hrs. for breakthrough pain. the DDD gives me

more pain than the OA and RA . then they all get to hurting and you

don't know which one is worse.....lol.....swollen and dis figured

joints...... i'm 69 yrs. old..... got to keep on smiling.....

Betty

On 1/12/11, Janice Cline <englishrose_08066@...> wrote:

>  Graham,

>     This is my first post to the group. Like Missie, I am in the same boat

> as

> your wife.   I have RA for at least 15 years.   And have " out grown " many

> medications as they do not work anymore.  Placquenil, enbrel, Cimzia.  I

> thought

> I finally found the the perfect one in Cimzia when I started in the trail

> earlier in the year as it stopped the pain within a few weeks.   But

> recently

> the pain come back again fiercely, so I was started on methortrexate about a

> month ago with the Cimzia and prednisione.  I have been on prednisone last 2

> to

> 3 years daily with  lots of calcium and vitamin D.  My goal is to get off

> prednisone completely.  Unfortunately, the pain increased expecially in my

> feet

> and legs so much so that I could not tolerate a blanket on them at night.

> And

> within the last 2 weeks my toes have become disfigured sliding toward the

> outer

> part of my foot.  If I didn't think I was in trouble with this disease

> before I

> do now.  Ibuprophen, percocet does not help when I have the pain.  It makes

> me

> sleepy but does nothing else.  I finally fall asleep around 7 am exhausted

> and

> sleep till 11 am when I have the luxery of not working.  Thankfully, my job

> has

> decreased to 2 days a week for a few hours because we are in a slow period.

> I

> am afraid if the job's hours pick up I will not be able to fulfill my

> responsibilities. Doctor does not want me to take for than 1/2 pill of

> percocet

> right now so that we can tell which joints are being effected.   He is

> afraid

> with complete pain relief I will damage more joints.  I can understand that

> because years ago I did that with prednisone with Osteoarthritis in my

> knee.

> The prednisone completely masked damage I was doing to the knee and when I

> came

> off of it.....boy was there pain....I had to have arthroscopic surgery to

> remove

> arthritis and bone chips.  Eventually I will have knee replacements.

> Well yesterday I had my appointment with the rheumatologist again we both

> agreed

> that Cimzia was doing nothing for me anymore and he is starting me on

> Rituxan as

> soon as my insurance approves it.  I think he was shocked at the condition

> of my

> feet.  He tells me most of my joints are swollen and the RA is worse

> ever.  Funny thing is that my perception of my swollen joints are " normal "

> because I have had swollen joints for so long. I tell if there is an

> exacerbation by the pain level. He tells me that it will take between 2 to 3

> weeks to get approval.  I am to continue with methotrexate. and he took me

> of

> prednisone and put me on a stronger steroid (Medrol dose pack) for a few

> days

> and I am to start my previous dose of prednisone after that.

> I am hoping the Rituxan works and and I never grow out of another RA med

> again.   It is an ongoing battle and like Missy I WANT MY LIFE BACK . If

> that

> means another medication fails   I will probably try a new one.  Losing

> weight

> helps but it is hard to lose weight when you have a sedentary lifestyle as I

> do

> right now.  Right now I am so frustrated with this disease that I am

> depressed,

> but I have to keep on trying.

> Let your wife know she is not alone in the fight against this disease.

> Keep on

> trying to fight the good fight.

>

> To the group,  I am so happy to have found you.  It gives me some emotional

> support when I need it.

> Janice

>

>

--

NUMBERS 6: 24-26

[Guest guest]

 

Hi Betty,

Your right you have to keep on smiling...at least with all my prednisone...my

asthma is not acting up!

Good luck with your journey.   I have the DDD too with my RA and OA.   When

everything starts hurting bad it is hard to discern which disease is causing

the

pain  and then you think am I going into fibromylagia or peripheral vascular

disease or neuropathy too. Your imagination goes nuts with this disease with

each new painful area.   As a nurse I know too much but not enough.  Then

you go

to the dr and he says it's just the progressiong of the RA!

 

I was talking with my friend and had to stop mid word because of pain in my

neck.  I know I scared her half to death.  It took a few minutes before I

could

talk.  Then I look at her and she has RSD and is always in some kind of pain

all

the time and on multiple pain meds and patches.  Her leg is 3 times the size of

the other one and she cannot tolerate shoes she wears flip flops in this weather

and snow!    She keeps on ticking....she doesn't realize how much she gives

me

the strength to keep going and keep fighting.

 

  As my husbands says:  It  is hell to get old.  and his second favoirite

saying..We are all falling apart!

 

God Bless Betty,

Janice