Question

May 25, 2009

I have been on Enbrel, not Humira. They are very similar medications.

When I had to choose between the two, I chose Enbrel, partly because

it had been around longer. I think that they have similar side

effects. Each of us reacts in our own individual way to a particular

medication, so you can't predict how you might react.

I've heard some say here that Humira stings going in, but I don't know

if that's always true or not. I still use the twice-weekly 25mg Enbrel

that I have to mix myself. It has no preservatives, so it doesn't

sting. It also seems to last longer for me.

Sue

On May 25, 2009, at 4:45 PM, Kathy Egenbacher wrote:

> HI, has anyone taken Embel and Humira? If so what are the

> differences between the two in side effects?

> thank you,

> Kathy

>

May 31, 2009

Hi Vicki,

I've also been having shortness of breath and heart palpations. The

shortness of breath happens more, then the palpations. I am kind of

worried about it. I will call my docs tomorrow.

Please, try to see your primary care right away. I would give the

rheumy's office a call, and let them know your concerns, and I bet they

will get you in earlier. I know taking humira and mtx is one of the

side effects. So, its very important you let them know.

Please, keep us posted. I know its hard to deal with all this, but its

got to be done. We must try to do the best we can, to keep going. I

know at times, its not easy. I feel your pain, so I understand very

much.

Take care,

Tawny

>

> I have been diagnosed with severe RA, Fibromalga and osteoporosis.

Humira, MTX, Lyrica and Oxycontin do help make the pain tolerable most

of the time. My question is lately I have been having heart

palpitations, shortness of breath, and now involuntary finger, hand and

arm movements. At first I thought it was my imagination, but it is

getting more and more frequent and a whole lot more noticeable. I do

have an appt with my Rheumy in July, but this really has me concerned.

Has anyone else had these symptoms, and if so what do you for them.

>

> Vicki

> Iowa

>

May 31, 2009

Thanks Tawny and all,

Is good to know I am not alone in this battle. I will be sure to call my GP and

my Rheumy tomorrow. Is scary having these concerns and no one around who really

understands.

I was bouncing for quite some time there. Went from several e-mails per day from

the group to zero. Seem to have theproblem fixed now.

I added those of you who sent your links to my face book. Is nice having a face

to go with the e-mails. LOL.

Anyway I have missed you and your advice Tawny. Please let us know how you are

doing. I know how it is to be in constant pain daily. Sending you some warm and

fluffy hugs {{{{Tawny}}}}

Sucks when ever the Oxycontin and Lyrica don't work. I take the extended release

oxy 2 X daily, plus the rapid release every four hours, and 150 mil of Lyrica

twice daily. I still take ambien to sleep or the pain wakes me several times.

Am on vacation now but.......................you all know how that goes. Some

one should tell this disease that it also needs to go on vacation. LOL>

Love to All

Vicki

Iowa

May 31, 2009

Vicki,

Thanks so much for the support and kindess you sent. It makes me feel

better, just to know someone cares. It's really hard to live with all

this pain. I was really out of it last night, or should I say early

this morning. This has been quite a battle for me, its been going on

for 9 yrs, with very little relief. I went to bed still crying, and

woke my hubby up. I had a good cry, and told him how I felt. I hide my

pain, and I try to just be normal. But, of course everyone that knows

me, can tell just by looking at me. The old Tawny is gone, and a new

woman has invaded my life. I like the old girl better,lol

I feel like a failure at times. I have gave up so much, and it hurts.

I use to be so active, and that is a challenge to give it up. I have a

14yr old still at home, and I want to do so much with her, and I'm not

able. I have a 3yr old granddaughter that I love very much. I spent

some time with her Sat, and she wanted me to pick her up, and I

couldn't. I told her, I could hold her hand, and she loved that just as

much, I know. A lot of it, I'm sure is my pride. Why does life have to

suck so much?

I'm glad your on vacation, I wish your RA was too. I know its rough

Vicki, but try to grab things you like to do, and hang on to people

close to your heart.

If your meds isn't working, talk to your doctor. I'm on Lortab for my

pain, and Flexeril for my neck pain. Between the two meds, I can

usually tolerate life, most of the time. I'm scared to ask my doctor to

change my meds. She might give me something that doesn't help at all.

The last time I went to the doctor, I had to do a drug test along with

my lab work. Some kind of new policy, a random drug test on patients

now, never heard of.

You take care Vicki. I'm so glad to get back on the group. When you

don't see me on here, you know I'm not feeling well. Keep me posted on

the doctor.

PS:Thanks for the warm and fluffy hugs, I can use them today:)

Gentle hugs,

Tawny

>

> Thanks Tawny and all,

> Is good to know I am not alone in this battle. I will be sure to call

my GP and my Rheumy tomorrow. Is scary having these concerns and no one

around who really understands.

> I was bouncing for quite some time there. Went from several e-mails

per day from the group to zero. Seem to have theproblem fixed now.

> I added those of you who sent your links to my face book. Is nice

having a face to go with the e-mails. LOL.

> Anyway I have missed you and your advice Tawny. Please let us know how

you are doing. I know how it is to be in constant pain daily. Sending

you some warm and fluffy hugs {{{{Tawny}}}}

> Sucks when ever the Oxycontin and Lyrica don't work. I take the

extended release oxy 2 X daily, plus the rapid release every four hours,

and 150 mil of Lyrica twice daily. I still take ambien to sleep or the

pain wakes me several times.

> Am on vacation now but.......................you all know how that

goes. Some one should tell this disease that it also needs to go on

vacation. LOL>

> Love to All

> Vicki

> Iowa

>

June 1, 2009

Hi Vicki - I'm sorry you are having such a tough time of things. Please get this

checked out soon. It could be something as simple as an anxiety attack or it

could be something much more serious. It could be from your medications or it

could be more serious. Please don't delay getting this checked out. Anytime

shortness of breath and heart palpitations are involved, you should call your

doctor right away. Until you get a firm diagnosis as to what is causing this, I

wouldn't dilly dally.

I hope this doesn't sound too harsh. I know how much we all hate doctors and

dread more appointments or the thought of one more diagnosis. I'm the bossy

worry wart of the bunch. I don't want anything bad to happen to my RA friends.

We're in this together.

Doreen

I have been diagnosed with severe RA, Fibromalga and osteoporosis. Humira, MTX,

Lyrica and Oxycontin do help make the pain tolerable most of the time. My

question is lately I have been having heart palpitations, shortness of breath,

and now involuntary finger, hand and arm movements. At first I thought it was

my imagination, but it is getting more and more frequent and a whole lot more

noticeable. I do have an appt with my Rheumy in July, but this really has me

concerned. Has anyone else had these symptoms, and if so what do you for them.

Vicki

Iowa

June 1, 2009

Awww, (((((Tawny))))) - you are NOT a failure - none of us are. We may not be

the people we used to be, but we can be better than we used to be - maybe not

physically, but emotionally. Find things that you CAN do with your daughter -

rent a movie on PPV, paint each other's nails - or have her paint yours. I'm

looking forward to my daughter getting her learner's permit this summer. Driving

has become so difficult for me, but I can sit back and tell her what to do! LOL

I have 3-year old grandchildren, too. When they want me to hold them, I will sit

in a comfortable chair or on the sofa and have them climb up next to me or on my

lap. Then I can wrap my arms around them and love on them and they don't know

that Mimi " couldn't " pick them up. They just want to feel the love. When they

want me to get down on the floor to play with them, I let them know I can't get

down there, but I can sit in a chair and play just the same. They love it!

We have to be creative. Think of new ways to do the things we love. We may not

be as active as we used to be, but we can certainly be as active as we

physically can. If your pain is not under control - tell your doctor. Mine knows

I'm a whiner and I don't care. His job is to make me as comfortable as he can. I

was totally ticked off that he didn't offer the patient assistance program with

Enbrel. He should have known. I will be changing Rheumatologists as soon as my

SSD is approved. I need one that is going to fight this fight WITH me!

Ok - off on a rant here...Please have a blessed and beautiful day. Find the joy

in all the little things around us.....Doreen

>

> Vicki,

>

> Thanks so much for the support and kindess you sent. It makes me

> feel better, just to know someone cares. It's really hard to live

> with all this pain. I was really out of it last night, or should I

> say early this morning. This has been quite a battle for me, its

> been going on for 9 yrs, with very little relief. I went to bed

> still crying, and woke my hubby up. I had a good cry, and told him

> how I felt. I hide my pain, and I try to just be normal. But, of

> course everyone that knows me, can tell just by looking at me. The

> old Tawny is gone, and a new woman has invaded my life. I like the

> old girl better,lol

>

> I feel like a failure at times. I have gave up so much, and it

> hurts. I use to be so active, and that is a challenge to give it

> up. I have a 14yr old still at home, and I want to do so much with

> her, and I'm not able. I have a 3yr old granddaughter that I love

> very much. I spent some time with her Sat, and she wanted me to

> pick her up, and I couldn't. I told her, I could hold her hand,

> and she loved that just as much, I know. A lot of it, I'm sure is

> my pride. Why does life have to suck so much?

>

> I'm glad your on vacation, I wish your RA was too. I know its rough

> Vicki, but try to grab things you like to do, and hang on to people

> close to your heart.

>

> If your meds isn't working, talk to your doctor. I'm on Lortab for

> my pain, and Flexeril for my neck pain. Between the two meds, I can

> usually tolerate life, most of the time. I'm scared to ask my

> doctor to change my meds. She might give me something that doesn't

> help at all. The last time I went to the doctor, I had to do a drug

> test along with my lab work. Some kind of new policy, a random

> drug test on patients now, never heard of.

>

> You take care Vicki. I'm so glad to get back on the group. When

> you don't see me on here, you know I'm not feeling well. Keep me

> posted on the doctor.

>

> PS:Thanks for the warm and fluffy hugs, I can use them today:)

>

> Gentle hugs,

>

> Tawny

June 1, 2009

I got tears in my eyes just reading this. I am so sorry that you are having such

a tough time. I will be praying for you today as I work.

Wish I could fix it.

Love

jane

> >

> > Thanks Tawny and all,

> > Is good to know I am not alone in this battle. I will be sure to call

> my GP and my Rheumy tomorrow. Is scary having these concerns and no one

> around who really understands.

> > I was bouncing for quite some time there. Went from several e-mails

> per day from the group to zero. Seem to have theproblem fixed now.

> > I added those of you who sent your links to my face book. Is nice

> having a face to go with the e-mails. LOL.

> > Anyway I have missed you and your advice Tawny. Please let us know how

> you are doing. I know how it is to be in constant pain daily. Sending

> you some warm and fluffy hugs {{{{Tawny}}}}

> > Sucks when ever the Oxycontin and Lyrica don't work. I take the

> extended release oxy 2 X daily, plus the rapid release every four hours,

> and 150 mil of Lyrica twice daily. I still take ambien to sleep or the

> pain wakes me several times.

> > Am on vacation now but.......................you all know how that

> goes. Some one should tell this disease that it also needs to go on

> vacation. LOL>

> > Love to All

> > Vicki

> > Iowa

> >

June 1, 2009

Awwww Tawny,

My heart aches for you because I do understand and know exactly where you are

coming from. I have been diagnosed for four years and it has been the longest

four years of my life. I have 5 grandchildren aging from 2 to 9 and another due

in two weeks. They all just spent the week with me, and like you it tears me up

inside that I am not able to tote them around any longer. Especially when we

really don't look sick to them.

I cry myself to sleep many nights, trying hard not to wake my hubby, then I have

an even more awful day at work because I am to tired to move. When I look in the

mirror I do not even see me. I have gained so much weight so quickly, none of my

clothes fit. Is hard to believe that I went from 108 pound to 137 in less than a

year. And I am not even on prednisone.

You are in no way a failure my dear. You will never know what an inspiration you

and a few others were to me when I joined this group. I was so alone, no one

understood me, Many times I wanted to join my son who passed away in 2000, which

is what I was thinking that day. I was honestly beginning to think I was crazy,

that this disease was all in my head. I was deleting all of my support

groups for parents of suicides when this group popped up. On a whim I joined,

approved me, and a world of friends opened up instantly. So NEVER feel you

are a failure my dear, you guys are Totally Awesome in my book,

Love

Vicki

Iowa

June 1, 2009

Please hang in there friends! If we do not understand all of the pain, misery

and life changes, then who can? We all have this burden to bear and hopefully

can do it together. My family does not understand- husband says the usual " But,

you do not look sick " and the kids (ages 7 and 9) do not understand why Mom sits

in a lawn chair outside watching them play instead of me out there with them. I

forwarded the 'Spoon Theory' to my husband and he got mad at me.

I get up every morning no matter what and attend to the kids. I am just so

tired and move like I am 100 years old. My days of the immaculate house are

apparently gone. I do not nap, but move so slow and have trouble remembering

stuff. If there is food cooked, clothes washed and clean kids then I am

thinking it is a good day. I try to sew for extra $, but that is slow going and

not when the kids are around.

It saddens me that I am short with the kids or just silent a lot of the time.

Dh and my marriage was on the rocks before, and now... My life seems to revolve

around trying to take care of kids and Dh. I go no where for myself and only

have 2 friends that I talk to on the phone. Sometimes, when I am driving by

myself, I contemplate just flicking the wheel and going off into a deep ditch.

Just a fantasy, as I could not do that to my children. If I can manage to keep

plugging away each day, I KNOW that anyone can! Take it just 5 min. at a time

friends. D. in south Louisiana

> >

> > Vicki,

> >

> > Thanks so much for the support and kindess you sent. It makes me

> > feel better, just to know someone cares. It's really hard to live

> > with all this pain. I was really out of it last night, or should I

> > say early this morning. This has been quite a battle for me, its

> > been going on for 9 yrs, with very little relief. I went to bed

> > still crying, and woke my hubby up. I had a good cry, and told him

> > how I felt. I hide my pain, and I try to just be normal. But, of

> > course everyone that knows me, can tell just by looking at me. The

> > old Tawny is gone, and a new woman has invaded my life. I like the

> > old girl better,lol

> >

> > I feel like a failure at times. I have gave up so much, and it

> > hurts. I use to be so active, and that is a challenge to give it

> > up. I have a 14yr old still at home, and I want to do so much with

> > her, and I'm not able. I have a 3yr old granddaughter that I love

> > very much. I spent some time with her Sat, and she wanted me to

> > pick her up, and I couldn't. I told her, I could hold her hand,

> > and she loved that just as much, I know. A lot of it, I'm sure is

> > my pride. Why does life have to suck so much?

> >

> > I'm glad your on vacation, I wish your RA was too. I know its rough

> > Vicki, but try to grab things you like to do, and hang on to people

> > close to your heart.

> >

> > If your meds isn't working, talk to your doctor. I'm on Lortab for

> > my pain, and Flexeril for my neck pain. Between the two meds, I can

> > usually tolerate life, most of the time. I'm scared to ask my

> > doctor to change my meds. She might give me something that doesn't

> > help at all. The last time I went to the doctor, I had to do a drug

> > test along with my lab work. Some kind of new policy, a random

> > drug test on patients now, never heard of.

> >

> > You take care Vicki. I'm so glad to get back on the group. When

> > you don't see me on here, you know I'm not feeling well. Keep me

> > posted on the doctor.

> >

> > PS:Thanks for the warm and fluffy hugs, I can use them today:)

> >

> > Gentle hugs,

> >

> > Tawny

>

June 1, 2009

Tawny... Geez thanks alot...LOL I get off work early because I have a battery

of tests my rhuem is sending me for this afternoon and now I'm just a blubbery

mess... As red as my cheeks are, they're sure to think I'm having some type of

heat stroke...

Don't give up girl... As I read others posts and of course my own

experiences... Your Not Alone!!!!!!!!!!!!!!!

I can't count how often I've cried myself to sleep trying not to let my husband

or my 12 year old daughter know what was going on..

and there is no other way but to say it Sucks that we can't be there for our

children in the way we would like... My daughter loves soccer and we used to

take martial arts classes together... Now I cheer her from the sid3elines and

sit on the bench to watch her kick butt... Oh how I wish I could be

participating! Nothing in a million years will make me want those things back,

Never!

As my preacher tells me, we need to redefine ourselves... Find out where our

new places are and what we've been given this challenge for.

The road will not be easy, but nothing worth while ever is...

Bless you sweet heart.. I hope you feel better soon

Bonnie

June 1, 2009

Hi Doreen,

My granddaughter loves to be held, when going bye-bye. There is no way

I can lift her right now. She is getting use to holding nana's hand

when walking around. It's a big change to get use too:(

I do try, and do everything I can with my daughter. Being 14, can be

rather difficult at times I know I'm not a complete failure:) Its just

really hard, especially when you get a lot of this health crap dumped on

you.

So, your not getting the enbrel now? I must have missed your post, or I

haven't read it yet. I am glad your finding a new rheumy. I really

believe a good doctor can help a patient lots, thats trying to get

disability. My rheumy totally HELPED me, that is for sure. I might be

still fighting social security right now.

You rant all you want Doreen, its been a long time waiting for SSD and

Enbrel.

I contacted my rheumy's office today, trying to get a earlier

appointment, before June 16th. I told the office lady what was going

on, and I needed to get in earlier. She told me there is none

available. Then she replied, " you had one for tomorrow, but it was

cancelled. " I told her, that someone had called ME, and cancelled it.

I had nothing to do with it. My primary office will call tomorrow, to

go over the lab work, and they will try to work me in. I wanted to get

the x-rays started first, but I'll have to wait on it, I suppose.

I'm feeling a little better. Thanks everyone for all the wonderful

posts, emails, and prayers. I love you all so much.

Take care,

Tawny

>

> Awww, (((((Tawny))))) - you are NOT a failure - none of us are. We may

not be the people we used to be, but we can be better than we used to be

- maybe not physically, but emotionally. Find things that you CAN do

with your daughter - rent a movie on PPV, paint each other's nails - or

have her paint yours. I'm looking forward to my daughter getting her

learner's permit this summer. Driving has become so difficult for me,

but I can sit back and tell her what to do! LOL

>

> I have 3-year old grandchildren, too. When they want me to hold them,

I will sit in a comfortable chair or on the sofa and have them climb up

next to me or on my lap. Then I can wrap my arms around them and love on

them and they don't know that Mimi " couldn't " pick them up. They just

want to feel the love. When they want me to get down on the floor to

play with them, I let them know I can't get down there, but I can sit in

a chair and play just the same. They love it!

>

> We have to be creative. Think of new ways to do the things we love. We

may not be as active as we used to be, but we can certainly be as active

as we physically can. If your pain is not under control - tell your

doctor. Mine knows I'm a whiner and I don't care. His job is to make me

as comfortable as he can. I was totally ticked off that he didn't offer

the patient assistance program with Enbrel. He should have known. I will

be changing Rheumatologists as soon as my SSD is approved. I need one

that is going to fight this fight WITH me!

>

> Ok - off on a rant here...Please have a blessed and beautiful day.

Find the joy in all the little things around us.....Doreen

June 1, 2009

Jane,

Sorry, I didn't mean to bring tears to your eyes. I've had a lot of

love from famiy and friends the last few days, and that has helped so

much. Thanks Jane, for your wonderful support, kindness, and prayers.

I am truly touched by you.

Gentle hugs,

Tawny

>

> I got tears in my eyes just reading this. I am so sorry that you are

having such a tough time. I will be praying for you today as I work.

> Wish I could fix it.

> Love

> jane

June 1, 2009

,

I'm sorry for the rough time your having. It seems like we all have

more bad days lately. You know when I was first diagnosed, everyone in

the family was supportive. But, then days go by, weeks, months, years,

and I don't get any better. Then, its just a nod when I talk about

what's hurting for the day. I just kind of keep my pain inside, but its

hard to do at times.

Sorry your hubby is being so hard on you. It does happen, and there

isn't a lot one can do. If they don't want to listen, you can't make

them. I just hope in time, he'll change his attitude.

We all have been in the same situation, it wouldn't take much to do

something to end our life. We just have to remember who we would leave

behind, and how sad they would be. They might even blame theirselves.

So yes, just keep on going, and remember were all in this together. You

can email me anytime, if you need to talk.

Take care,

Tawny

>

> Please hang in there friends! If we do not understand all of the pain,

misery and life changes, then who can? We all have this burden to bear

and hopefully can do it together. My family does not understand- husband

says the usual " But, you do not look sick " and the kids (ages 7 and 9)

do not understand why Mom sits in a lawn chair outside watching them

play instead of me out there with them. I forwarded the 'Spoon Theory'

to my husband and he got mad at me.

>

> I get up every morning no matter what and attend to the kids. I am

just so tired and move like I am 100 years old. My days of the

immaculate house are apparently gone. I do not nap, but move so slow and

have trouble remembering stuff. If there is food cooked, clothes washed

and clean kids then I am thinking it is a good day. I try to sew for

extra $, but that is slow going and not when the kids are around.

>

> It saddens me that I am short with the kids or just silent a lot of

the time. Dh and my marriage was on the rocks before, and now... My life

seems to revolve around trying to take care of kids and Dh. I go no

where for myself and only have 2 friends that I talk to on the phone.

Sometimes, when I am driving by myself, I contemplate just flicking the

wheel and going off into a deep ditch. Just a fantasy, as I could not do

that to my children. If I can manage to keep plugging away each day, I

KNOW that anyone can! Take it just 5 min. at a time friends.

D. in south Louisiana

June 1, 2009

Bonnie,

You are right, " we are not alone. " I have met an amazing group of people

here. This is the most REAL friends I've had in a long time. I'm just

so grateful for everyone.

>

> Tawny... Geez thanks alot...LOL I get off work early because I have a

battery of tests my rhuem is sending me for this afternoon and now I'm

just a blubbery mess... As red as my cheeks are, they're sure to think

I'm having some type of heat stroke...

>

> Don't give up girl... As I read others posts and of course my own

experiences... Your Not Alone!!!!!!!!!!!!!!!

> I can't count how often I've cried myself to sleep trying not to let

my husband or my 12 year old daughter know what was going on..

> and there is no other way but to say it Sucks that we can't be there

for our children in the way we would like... My daughter loves soccer

and we used to take martial arts classes together... Now I cheer her

from the sid3elines and sit on the bench to watch her kick butt... Oh

how I wish I could be participating! Nothing in a million years will

make me want those things back, Never!

>

> As my preacher tells me, we need to redefine ourselves... Find out

where our new places are and what we've been given this challenge for.

> The road will not be easy, but nothing worth while ever is...

> Bless you sweet heart.. I hope you feel better soon

> Bonnie

>

June 2, 2009

Hi Tawny - I misunderstood what you were saying, sorry. Now I understand. My

grandchildren loved to be carried to the car when they were going, too. I know

exactly how you are feeling. How sweet she is getting used to holding your hand.

She's a " big girl " now

I know it can be tough with teenagers around. Mine is 16. We can only do the

best we can do. It is hard - especially when you feel like things are coming at

you all at once. Right now I am torn between laying down and screaming. There's

a thunderstorm headed this way. My toes feel like they're breaking and my knees

are feeling like they want to pop - and that's just for starters.

I DID get my Enbrel - last Thursday. No thanks to my Rheumy, though. It was

Heidi from here that gave me the number for Enbrel and I had already been

approved and set to go when I brought the paperwork to my Rheumy for his part.

He gave me an Enbrel packet and told me to look it over and call them. When I

called them they told me I didn't need the packet - we had already taken care of

everything. If it hadn't been for the support of this group, I might still be

without it, though. He never spoke to me about Enbrel until I told HIM about it.

I've only had the one injection so far and I don't know what (if any) difference

there is yet. They said it can take 2-4 weeks before I'd feel the full effect of

it. I will continue to hope and pray that this is the right combination of meds

for me.

I don't know if I mentioned that I finally got a hearing date for my SSD case.

It came in the mail a couple of days after I had been approved for the Enbrel. I

tell you, I was singing praises to God. I felt like I had two miracles coming at

me that week! I need to wait until after my SSD hearing on the 25th of this

month before I switch Rheumy's, though. As disappointed as I am with the one I

see now, he is the one who gave me my initial diagnosis, so I hope he won't drop

the ball with the paperwork they need for the hearing. Please keep me in your

prayers for a positive outcome at the hearing. My attorney is very confident

that we won't have any troubles - she even laughed and said my case is " fun " .

So, I am encouraged by her, but still am leaving it in God's hands.

I'm happy to hear you are feeling a little bit better. I pray your doctors can

come up with a better game plan for you so you don't have so much pain all the

time. I know how worn down we all get with this pain. I love you too, sweet

lady. I will continue to keep you in my prayers. Let us know how things turn out

with your doctor.....Doreen

>

> Hi Doreen,

>

> My granddaughter loves to be held, when going bye-bye. There is no

> way I can lift her right now. She is getting use to holding nana's

> hand when walking around. It's a big change to get use too:(

>

> I do try, and do everything I can with my daughter. Being 14, can

> be rather difficult at times I know I'm not a complete failure:)

> Its just really hard, especially when you get a lot of this health

> crap dumped on you.

>

> So, your not getting the enbrel now? I must have missed your post,

> or I haven't read it yet. I am glad your finding a new rheumy. I

> really believe a good doctor can help a patient lots, thats trying

> to get disability. My rheumy totally HELPED me, that is for sure.

> I might be still fighting social security right now.

>

> You rant all you want Doreen, its been a long time waiting for SSD

> and Enbrel.

>

> I contacted my rheumy's office today, trying to get a earlier

> appointment, before June 16th. I told the office lady what was

> going on, and I needed to get in earlier. She told me there is none

> available. Then she replied, " you had one for tomorrow, but it was

> cancelled. " I told her, that someone had called ME, and cancelled

> it. I had nothing to do with it. My primary office will call

> tomorrow, to go over the lab work, and they will try to work me

> in. I wanted to get the x-rays started first, but I'll have to

> wait on it, I suppose.

>

> I'm feeling a little better. Thanks everyone for all the wonderful

> posts, emails, and prayers. I love you all so much.

>

> Take care,

>

> Tawny

June 3, 2009

Hi Doreen,

I'm not great explaining things. I'm sorry your in so much pain today.

I hope you can lay down, and you feel better when you get up. Are you

flaring? I hope the enbrel will start working for you.

Sometimes, doctors don't give out information that can help their

patients. This group is a miracle to all of us. I am so thankful for

and a, and all the members who hang around.

You get a lot of rest, and I pray you feel better soon. Friends are

forever, and I am here always for you.

Gentle hugs,

Tawny

Great news on the court date, about time!!! I have a good feeling, you

have suffered way too long.

>

> Hi Tawny - I misunderstood what you were saying, sorry. Now I

understand. My grandchildren loved to be carried to the car when they

were going, too. I know exactly how you are feeling. How sweet she is

getting used to holding your hand. She's a " big girl " now

>

> I know it can be tough with teenagers around. Mine is 16. We can only

do the best we can do. It is hard - especially when you feel like things

are coming at you all at once. Right now I am torn between laying down

and screaming. There's a thunderstorm headed this way. My toes feel like

they're breaking and my knees are feeling like they want to pop - and

that's just for starters.

>

> I DID get my Enbrel - last Thursday. No thanks to my Rheumy, though.

It was Heidi from here that gave me the number for Enbrel and I had

already been approved and set to go when I brought the paperwork to my

Rheumy for his part. He gave me an Enbrel packet and told me to look it

over and call them. When I called them they told me I didn't need the

packet - we had already taken care of everything. If it hadn't been for

the support of this group, I might still be without it, though. He never

spoke to me about Enbrel until I told HIM about it. I've only had the

one injection so far and I don't know what (if any) difference there is

yet. They said it can take 2-4 weeks before I'd feel the full effect of

it. I will continue to hope and pray that this is the right combination

of meds for me.

>

> I don't know if I mentioned that I finally got a hearing date for my

SSD case. It came in the mail a couple of days after I had been approved

for the Enbrel. I tell you, I was singing praises to God. I felt like I

had two miracles coming at me that week! I need to wait until after my

SSD hearing on the 25th of this month before I switch Rheumy's, though.

As disappointed as I am with the one I see now, he is the one who gave

me my initial diagnosis, so I hope he won't drop the ball with the

paperwork they need for the hearing. Please keep me in your prayers for

a positive outcome at the hearing. My attorney is very confident that we

won't have any troubles - she even laughed and said my case is " fun " .

So, I am encouraged by her, but still am leaving it in God's hands.

>

> I'm happy to hear you are feeling a little bit better. I pray your

doctors can come up with a better game plan for you so you don't have so

much pain all the time. I know how worn down we all get with this pain.

I love you too, sweet lady. I will continue to keep you in my prayers.

Let us know how things turn out with your doctor.....Doreen

>

June 30, 2009

G'day ,

I am coming up for my 2nd CML birthday and have been very fortunate that my

blood work has always been " perfect " once I got to haematological remission

even though Glivec and I didn't get on together. Some do need transfusions

- it all depends on your counts. Hopefully you will be like me and never

need one. I was very fortunate that I was dx just as my white count started

to go " haywire " so never needed any other treatment ie hydrea and my spleen

wasn't affected. Luckily I have been PCRU since Dec 08. Due to intolerance

to Glivec I swapped to Tasigna in Aug 08 and have been on it ever since.

I can well remember those early 'halcyon' days, but they seem like a long

time ago now. Time and questions will bring understanding! Especially as

Zavie likes to point out those lovely numbers under our signatures will come

to mean something.

Regards,

#1149 Zavies Zero Club

Dx: 25/07/07

Commenced Glivec 400mg 27/9/07

Changed to Tasigna 800mg 3/8/08

PCRs:

23/01/08 - 13.01 %

14/04/08 - 0.08 %

12/05/08 - 0.02% (Glivec 200mg)

06/08/08 - 0.09 % (commenced Tasigna)

30/09/08 - 0.18 %

19/12/08 - 0.00%

23/03/09 - 0.00%

From: [mailto: ] On Behalf Of

wendyphillips54

Sent: Tuesday, 30 June 2009 2:18 PM

Subject: [ ] Question

I have a question....I have been reading posts from everyone and so many of

y'all are or have been in trials. Also a lot of y'all have had blood

transfusions. Does everyone with CML eventually have to have a blood

transfusion? Do I need to get people to start donating blood for me just in

case? I just don't know what to expect IF the Gleevec ever does what it's

supposed to do for me. I would like to know more about what to expect next.

Thanks,

June 30, 2009

Hi ,

4 years and 3 months for me and I have normal blood counts since

remission, a few weeks after dx. From what I have read a majority

keeps normal blood counts in the long term, long term being ~ 8 years

as the latest gleevec follow up. The list is a super source of

information but we probably shouldn't draw statistics from it, as lots

of people with cml do not write here and it is unlikely to be a fair

sample as people with more problems are more likely to seek

information.

Marcos.

On Mon, Jun 29, 2009 at 9:17 PM,

wendyphillips54<wendyphillips54@...> wrote:

>

> I have a question....I have been reading posts from everyone and so many of

> y'all are or have been in trials. Also a lot of y'all have had blood

> transfusions. Does everyone with CML eventually have to have a blood

> transfusion? Do I need to get people to start donating blood for me just in

> case? I just don't know what to expect IF the Gleevec ever does what it's

> supposed to do for me. I would like to know more about what to expect next.

>

> Thanks,

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 468 9926 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/

June 30, 2009

Thanks Marcos...I have read so much stuff on here and it all gets a bit

confusing when I have no idea what is ahead of me. I guess we just have to take

it one day at a time and see what happens. Thanks for answering my question.

Blessings,

>

> I have a question.... I have been reading posts from everyone and so many of

> y'all are or have been in trials. Also a lot of y'all have had blood

> transfusions. Does everyone with CML eventually have to have a blood

> transfusion? Do I need to get people to start donating blood for me just in

> case? I just don't know what to expect IF the Gleevec ever does what it's

> supposed to do for me. I would like to know more about what to expect next.

>

> Thanks,

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 468 9926 (cell)

marcospgstanford (DOT) edu

montereyunderwater@ gmail.com

www.stanford. edu/~marcospg/

June 30, 2009

, thank you for answering my question. Like I was telling Marcos, I read so

much stuff on here and the way it affects us all in a different way and it is

all a bit confusing when you are a newbie to CML. I don't know what is ahead of

me and it is really a scarey thing. My blood counts have been all over the

place. One time I go and things look good, wbc is going down and the next time

it has gone back up so I am not sure what is going on. I have other health

problems too so sometimes I am not sure if it is the CML making me feel bad or

if it's the other things going on that makes me feel bad. I just try to keep

praying and trusting that God will show me what to do or at least lead me in the

right direction. I think I have been led to an excellent Dr for the CML...now if

I can just get a good Dr for my other health issues, all will be good.

Blessings,

From: Malseed <rodorbal@...>

Subject: RE: [ ] Question

Date: Tuesday, June 30, 2009, 4:53 AM