Re: New here and new to RA

October 23, 2008

welcome to our group and all new members,

Your symptoms sounds just like mine when the ra started...So I

decided to give you my 2 cents worth...It sounds like you have a rheumy

that is willing to work with you and thats great...I know for me we

decided to less aggressive first with the demards...Im a nurse and work

in the hospital so the biggest thing for me infections..thats why we

decided to do that route first...

I have been on methotrexate without relief...switched to arava and

plaquenil this july...Now my sedrate is normal now..i was starting to

feel better but I did have a flare and now I am getting fatiqued

again..I told the rheumy for myself i wanted to try the less aggressive

first and give it a good 6 months...

On of the tings I did say that he was the expert and what was his

opinion what I should do...I was diagnosed this may...

goodluck diane from ohio

October 24, 2008

Jill,

Sorry to hear about your daignosis. You have come to a great place

for information. I am still kind of new, since I was dx last year.

I hope your appointment went well and you got some answers to your

questions.

Shirley

>

> Hello there!

>

> My name is Jill. I am 37 years old and... up until now, was in

great

> health. I was just diagnosed with RA about a month ago, although I

> believe I had some subtle symptoms going back about 2 years or so.

But

> the catalyst that sent me to a rhummy was the typical pain in the

> hands and feet. After it started to affect my hands and feet, it

> seemed to spread pretty quickly (ankles, wrists, shoulder). I had

some

> blood work done and I have a rheumatoid factor (I think it was at

63).

> The initial blood work did not show anything in the sed rate or the

> other thing (some sort of antigen or soomething). I had another

work

> up done at the rhummy's and will find out about them tomorrow... so

> maybe that's changed.

>

> My rhummy put me on etodolac for the pain. Nothing else yet. It did

> help initially, but after about a week, the pain had returned. I

> called the doctor to ask him for something else because not only

was

> it not working, but the pain was getting worse and spreading.

> Specifically to my neck, which is awful. Sleep was becoming an

> issue... etc... So he put me on prednisone. It was just that 6 day

> packet. After the first 24 hours on it, I was like... %98 better. I

> cried because I forgot how it felt to be normal (I've been

suffering

> pretty bad since the end of July). Today, it has been a week since

I

> finished up the pred pack... and slowly but surely the pain is

> returning. I go back for a recheck tomorrow. I guess I am wondering

> what I should and shouldn't do... as I am completely new to all of

> this. I have hesitation to get involved with the heavy duty drugs.

> Afterall, I am not even remotely crippled with pain. It's just

> moderate, annoying pain. I fear the crippling pain though.. and

WILL

> take drugs if it will increase my chances of never having that

kind of

> pain.

>

> So I am sorta throwing out the question for those of you who are

well

> versed in this subject and have been dealing with this disease for

> awhile.... If you could go back to when you were first diagnosed,

is

> there something you wish you did or did NOT do? Do you wish you

tried

> this or that drug initially. I realize everyone is different and

that

> what worked for you might not have worked for another. But... I'd

like

> to hear them all, as a reference. I am kinda confused about how to

> proceed. I have only seen my rhummy once. He talked about different

> treatments... aggressive to non-aggressive. He made me feel like I

was

> the in charge of how to proceed. We could take it any direction I

saw

> fit... I could be wrong about that. Like I said, I go for my second

> appointment tomorrow, so maybe he has a plan based on HIS blood

work

> results (i went to my reg. doctor first, way back in the summer...

and

> then it took 6 weeks to finally see this rhummy and now is the

recheck

> since then). I don't know....

>

> Also, I'd like to throw this out there.... Ever since I stopped

taking

> my birth control pills (2 years ago), weird things have happened to

> me. I keep getting ovarian cysts... my periods are insanely heavy

and

> painful... and now that I think about it, it is also when all of

this

> subtle pain started. Anyone think it could be related. I asked my

> rhummy and he poo-pooed it.... but you never know?

>

> Alright, I've rambled enough... I am off to work... which by the

way,

> you guys will appreciate this, I am a house cleaner. Imagine

cleaning

> other people's homes with RA pain? Not fun. The only respite I

have is

> that I am back in school for graphic design and I am almost done.

So

> hopefully before this gets out of control, I'll be working a much

less

> physical job. Fingers crossed anyway...

>

> Thanks for any advice!

> Jill

>

October 25, 2008

Hi Jill~

My name is & I'm new to this site too.

Boy, do you sound like what I went through back in January.

My Rheumy put me on all the same meds................Nothing helped.

He has me on now MTX,Plaquanil. Humira injectable, folic acid....

plus I take a lot of vitamins. I also have him give me a Cortisone

shot every 2-3 months. The wonder drug. I can actually run up & down

stairs, do squats, sit ups. I even wear high heels to work everyday.

Back in July I was roller blading with my 7 year old grandson. You

would never know that I have RA to look at me. Since the cortisone

shots, I feel like my old self again. Beleive me, I do not over do

anything or abuse my joints in any fashion.

Just a thought for you.

Hope you are feeling better.

Regards,

- In , " nana2livi " <s.p5315@...> wrote:

>

> Jill,

> Sorry to hear about your daignosis. You have come to a great place

> for information. I am still kind of new, since I was dx last year.

> I hope your appointment went well and you got some answers to your

> questions.

> Shirley

>

> >

> > Hello there!

> >

> > My name is Jill. I am 37 years old and... up until now, was in

> great

> > health. I was just diagnosed with RA about a month ago, although I

> > believe I had some subtle symptoms going back about 2 years or

so.

> But

> > the catalyst that sent me to a rhummy was the typical pain in the

> > hands and feet. After it started to affect my hands and feet, it

> > seemed to spread pretty quickly (ankles, wrists, shoulder). I had

> some

> > blood work done and I have a rheumatoid factor (I think it was at

> 63).

> > The initial blood work did not show anything in the sed rate or

the

> > other thing (some sort of antigen or soomething). I had another

> work

> > up done at the rhummy's and will find out about them tomorrow...

so

> > maybe that's changed.

> >

> > My rhummy put me on etodolac for the pain. Nothing else yet. It

did

> > help initially, but after about a week, the pain had returned. I

> > called the doctor to ask him for something else because not only

> was

> > it not working, but the pain was getting worse and spreading.

> > Specifically to my neck, which is awful. Sleep was becoming an

> > issue... etc... So he put me on prednisone. It was just that 6 day

> > packet. After the first 24 hours on it, I was like... %98 better.

I

> > cried because I forgot how it felt to be normal (I've been

> suffering

> > pretty bad since the end of July). Today, it has been a week

since

> I

> > finished up the pred pack... and slowly but surely the pain is

> > returning. I go back for a recheck tomorrow. I guess I am

wondering

> > what I should and shouldn't do... as I am completely new to all of

> > this. I have hesitation to get involved with the heavy duty drugs.

> > Afterall, I am not even remotely crippled with pain. It's just

> > moderate, annoying pain. I fear the crippling pain though.. and

> WILL

> > take drugs if it will increase my chances of never having that

> kind of

> > pain.

> >

> > So I am sorta throwing out the question for those of you who are

> well

> > versed in this subject and have been dealing with this disease for

> > awhile.... If you could go back to when you were first diagnosed,

> is

> > there something you wish you did or did NOT do? Do you wish you

> tried

> > this or that drug initially. I realize everyone is different and

> that

> > what worked for you might not have worked for another. But... I'd

> like

> > to hear them all, as a reference. I am kinda confused about how to

> > proceed. I have only seen my rhummy once. He talked about

different

> > treatments... aggressive to non-aggressive. He made me feel like

I

> was

> > the in charge of how to proceed. We could take it any direction I

> saw

> > fit... I could be wrong about that. Like I said, I go for my

second

> > appointment tomorrow, so maybe he has a plan based on HIS blood

> work

> > results (i went to my reg. doctor first, way back in the

summer...

> and

> > then it took 6 weeks to finally see this rhummy and now is the

> recheck

> > since then). I don't know....

> >

> > Also, I'd like to throw this out there.... Ever since I stopped

> taking

> > my birth control pills (2 years ago), weird things have happened

to

> > me. I keep getting ovarian cysts... my periods are insanely heavy

> and

> > painful... and now that I think about it, it is also when all of

> this

> > subtle pain started. Anyone think it could be related. I asked my

> > rhummy and he poo-pooed it.... but you never know?

> >

> > Alright, I've rambled enough... I am off to work... which by the

> way,

> > you guys will appreciate this, I am a house cleaner. Imagine

> cleaning

> > other people's homes with RA pain? Not fun. The only respite I

> have is

> > that I am back in school for graphic design and I am almost done.

> So

> > hopefully before this gets out of control, I'll be working a much

> less

> > physical job. Fingers crossed anyway...

> >

> > Thanks for any advice!

> > Jill

> >

>

October 26, 2008

Hi Jill

So sorry to hear you have RA. I am 37 years also and was diagnosed

12 months ago. This is a great group for information and support. I

hope you get the right treatment as soon as you can so you can get

this monster under control.

Cheryl

>

> Hello there!

>

> My name is Jill. I am 37 years old and... up until now, was in great

> health. I was just diagnosed with RA about a month ago, although I

> believe I had some subtle symptoms going back about 2 years or so.

But

> the catalyst that sent me to a rhummy was the typical pain in the

> hands and feet. After it started to affect my hands and feet, it

> seemed to spread pretty quickly (ankles, wrists, shoulder). I had

some

> blood work done and I have a rheumatoid factor (I think it was at

63).

> The initial blood work did not show anything in the sed rate or the

> other thing (some sort of antigen or soomething). I had another work

> up done at the rhummy's and will find out about them tomorrow... so

> maybe that's changed.

>

> My rhummy put me on etodolac for the pain. Nothing else yet. It did

> help initially, but after about a week, the pain had returned. I

> called the doctor to ask him for something else because not only was

> it not working, but the pain was getting worse and spreading.

> Specifically to my neck, which is awful. Sleep was becoming an

> issue... etc... So he put me on prednisone. It was just that 6 day

> packet. After the first 24 hours on it, I was like... %98 better. I

> cried because I forgot how it felt to be normal (I've been suffering

> pretty bad since the end of July). Today, it has been a week since I

> finished up the pred pack... and slowly but surely the pain is

> returning. I go back for a recheck tomorrow. I guess I am wondering

> what I should and shouldn't do... as I am completely new to all of

> this. I have hesitation to get involved with the heavy duty drugs.

> Afterall, I am not even remotely crippled with pain. It's just

> moderate, annoying pain. I fear the crippling pain though.. and WILL

> take drugs if it will increase my chances of never having that kind

of

> pain.

>

> So I am sorta throwing out the question for those of you who are

well

> versed in this subject and have been dealing with this disease for

> awhile.... If you could go back to when you were first diagnosed, is

> there something you wish you did or did NOT do? Do you wish you

tried

> this or that drug initially. I realize everyone is different and

that

> what worked for you might not have worked for another. But... I'd

like

> to hear them all, as a reference. I am kinda confused about how to

> proceed. I have only seen my rhummy once. He talked about different

> treatments... aggressive to non-aggressive. He made me feel like I

was

> the in charge of how to proceed. We could take it any direction I

saw

> fit... I could be wrong about that. Like I said, I go for my second

> appointment tomorrow, so maybe he has a plan based on HIS blood work

> results (i went to my reg. doctor first, way back in the summer...

and

> then it took 6 weeks to finally see this rhummy and now is the

recheck

> since then). I don't know....

>

> Also, I'd like to throw this out there.... Ever since I stopped

taking

> my birth control pills (2 years ago), weird things have happened to

> me. I keep getting ovarian cysts... my periods are insanely heavy

and

> painful... and now that I think about it, it is also when all of

this

> subtle pain started. Anyone think it could be related. I asked my

> rhummy and he poo-pooed it.... but you never know?

>

> Alright, I've rambled enough... I am off to work... which by the

way,

> you guys will appreciate this, I am a house cleaner. Imagine

cleaning

> other people's homes with RA pain? Not fun. The only respite I have

is

> that I am back in school for graphic design and I am almost done. So

> hopefully before this gets out of control, I'll be working a much

less

> physical job. Fingers crossed anyway...

>

> Thanks for any advice!

> Jill

>

October 26, 2008

Hi Jill,

Sorry to hear that you've been diagnosed with RA, but there is help

available. I've had it 15 years and only regret one aspect of my care. That

is, that I didn't ASK for the disease modifying agents available to RA patients

soon enough. For the first 3 years, my rheumatologist treated me with a fancy

aspirin, Plaquenil, and/or worthless gold shots.

He only started me on Methotrexate (one of the drugs which slows down the

disease) after I started developing enlarged hand joints & kept complaining

about my hand and feet pain. (Once enlarged, the joints don't get smaller).

Finally, relief. I was treated with Methotrexate, Azulfidine and Plaquenil

(triple therapy) successfully, for the next 11 years. Some dosage adjustment

was necessary but basically I had very few symptoms and lived a normal life.

Only this year, did these drugs become less effective for me, my pain increased,

my joint enlargement got worse, and I felt horrible. Thus, I've now begun one

of the " biologicals, " the big-time drugs that have dangerous side effects.

The Humira shots are nothing short of miraculous and have totally removed all

my joint pain. To look at me, other than slightly swollen finger joints, you

wouldn't know that I was ill. To be back feeling normal has been wonderful. I

worry, however, how long I'll be able to tolerate this drug, without side

effects or it becoming less effective, as the others did.

In summary, you will feel best and you will stop RA before it does much

damage, if you request and take the disease-modifying drugs which are available.

Go to a good rheumatologist and tackle it head-on.

I've learned so much from this support group and you will too. I think that

good treatment for RA can forestall some of the depression and/or complications

which people get. I definitely don't like having this disease, but then again,

I know that everyone gets something wrong with them at some time in their lives

and this is better than cancer or some other illnesses. Self education is a

great help.

Good luck to you and keep us informed.

Joy

October 27, 2008

Hi Jill:

I am 68, have had RA for 5 years now. My Rheumy started me on Pred.,

and MTX right away. I couldn't tolerate the MTX pills, so after a few

weeks, I went on MTX injections. About a year later, she put me on

Sulfasalazine and Placquenil. I take the max. dose on MTX,

Sulfasalazine, and Placquenil. I also take 10 mg. daily of Pred., and

1x a week I take Leucovorin, Folic Acid.

This combo. has worked very well for me. I do have flares, but they are

longer inbetween, and shorter in duration. I am mostly pain free, but

still get very tired daily. I have no damage so far in any joints or

bones. My blood work and Liver levels are always good.

I have a wonderful Rheumy, and wouldn't change anything she does for me.

I know if things change, and my condition worsens, the next big decision

will be Biological drugs. I hope I never have to go on these.

I pray you find the right meds. for you, and that you will begin to feel

better soon. Wishing you pain free days.

Hugs,

Barbara

>

> Hello there!

>

> My name is Jill. I am 37 years old and... up until now, was in great

> health. I was just diagnosed with RA about a month ago, although I

> believe I had some subtle symptoms going back about 2 years or so. But

> the catalyst that sent me to a rhummy was the typical pain in the

> hands and feet. After it started to affect my hands and feet, it

> seemed to spread pretty quickly (ankles, wrists, shoulder). I had some

> blood work done and I have a rheumatoid factor (I think it was at 63).