Re: How my first visit to the rheumatologist went

[Guest guest]

Hi .  I was so sorry to read that this ugly disease RA reared its ugly

head to you, and to get that news on your birthday was awful.

 

I have successfully taken Pred. daily for 6+ years.  It has been a miracle drug

for me.  Without it I could not function or even get out of bed.  My feet and

ankles were hit the hardest, and when they are flaring, I can hardly stand on

them.  I just had an episode with them, and my Rheumy increased my Prednisone

from 5mg. a day to 10mg. which I am still on.  Thank God that horrible pain is

gone.  I also take daily these R.A. meds., Placquenil, Sulfasalazine, and

inject MTX 1X a week.  These are my miracle " cocktail " RX drugs.  I have been

diagnosed with R.A. since I was 63, and I am now 70. 

 

Finding the right " cocktails " is trial and error.  Never give up, because in

time you will find what works best for you.  It took me awhile to find mine. 

These last 2 weeks was the first flare I have had in a 1  1/2 year.  I have

been under undue stress and I am sure that is what set off this flare.  My feet

are very happy now to be out of all that horrible pain and suffering.

 

It is so wonderful that you found this wonderful group for support.  They are

all so amazing, and so loving.  Everyone here knows what it is like to struggle

with this ugly disease, day in and day out.  They know how awful the pain is,

and what it takes to even get out of bed, and try to have a life.  I just hate,

hate when someone says to you, " It is all in your head " etc.  I wish it was in

my head, then I could walk and do anything I want each day.  It is a mean,

hurtful thing to say.  These insensitive people can not imagine what we have to

deal with.  If they did, they would keep their mouth shut.  No one knows this

R.A. pain like all of us here do.  Here you can cry, vent, find help,

compassion, understanding, and indeed, love. This group is so totaling amazing,

and that is why I love everyone so much.

 

I would rest as much as you can, as it sure helps.  I had to learn to pace

myself each day, and that was not an easy task for me.  I just take one day at

a time, as that is all I can handle.  I am just grateful I can do things, not

the way I did before R.A..  I do get some done and that is good.

 

Take care.  Nice to meet you.

 

Hugs,

 

Barbara

From: clinicquotes <sarah5775@...>

Subject: [ ] How my first visit to the rheumatologist went

Date: Friday, May 7, 2010, 10:02 PM

 

Well, I had my first doctor's appointment today. The doctor seems nice, and he

confirmed the diagnosis that my gp made- it's official, I have RA. Today is my

birthday, and let me tell you, it was not the best birthday present I could have

gotten. At least my mom, who came in with me and heard what he said, can no

longer say that there is nothing wrong with me and the pain is in my head.

According to my blood tests, I have RA and the disease is " very active. " I have

been in excruciating pain so I can attest to that.

The doctor put me on leflunomide- generic for Arava, and Plaquenil. It is weird

because no one in my family has RA. My mom asked the dr if the fact that I have

been on so many medications in the past could have caused this. (I have been on

every antidepressent and mood stabilizer under the sun since I was 16) he said

it was an " interesting question. " So who knows if something I took caused this?

But as far as I'm concerned, it doesn't matter. I have it now. There is no point

in blaming former doctors or whatever, the point is to move forward.

For the pain, he put me on Predisone (10 mg daily the first week, 5 the

second)and said I would have relief within 24 hours. I took it about three hours

ago and I think I'm already experiencing some relief- I was able to eat dinner

without too much pain, whereas for the past few days I ate nothing at all or

very little because it hurt too much to use a fork and knife! It was the worst

pain I can imagine, now its a bit better.

I am worried about the Prdisone, because its a weight gainer and I am already

100 pounds overweight (courtesy of the Lithium I was on for six years) and had

just lost about 15 pounds, and I'm hoping I do not gain it all back in the next

two weeks. Also, the last time I was on a steroid medication my bipolar went

nuts. I had a major manic episode and then a suicidal depression. I am hoping

that it doesnt' get as bad this time, but I'll try to keep in mind that its only

the medication if things do get dicey.

Does anyone have any information about the drugs I am on?

[Guest guest]

In a message dated 5/8/2010 8:04:10 A.M. Central Daylight Time,

sarah5775@... writes:

I am worried about the Prdisone, because its a weight gainer and I am

already 100 pounds overweight (courtesy of the Lithium I was on for six years)

and had just lost about 15 pounds, and I'm hoping I do not gain it all back

in the next two weeks. Also, the last time I was on a steroid medication

my bipolar went nuts. I had a major manic episode and then a suicidal

depression. I am hoping that it doesnt' get as bad this time, but I'll try to

keep in mind that its only the medication if things do get dicey. >

I'm 30-35 pounds overweight. I've been on Prednisone since I first saw the

rheumatologist and before I actually got the diagnosis. I haven't gained

any additional weight, but it might be because I feel kind of nauseated when

I'm fatigued. So I eat less then. However, my fat has shifted. I saw my PC

doc last week and complained that my weight isn't changing, but that my

shirts are tighter. She said Prednisone was the culprit. She asked if I

thought I was ready for a breast reduction -- it's more like a tummy reduction

I

need.

I was relieved with my diagnosis. I went to my PC doc three times with

complaints and it felt good to have the RA doc take me seriously. I went from

barely being able to walk and unable to get out of a chair to being able to

teach my line dance class. I too noticed marked improvement after three

hours.

I am concerned about long-term use. I'm on 5 mg daily. But I know what the

alternative is.

dd

[Guest guest]

Hi dd.  I have been on daily 5 mg. of Pred. for 6 1/2 years and I hope I can

take it forever.  It is my miracle med. for my RA.  My blood is monitored

every 3 months, and so far, everything is great, even my liver.  I don't worry

about taking it.  It has given me my life back.

 

I hope my information is helpful for you.

 

Hugs,

 

Barbara

From: dgd301@... <dgd301@...>

Subject: Re: [ ] How my first visit to the rheumatologist went

Date: Saturday, May 8, 2010, 4:07 PM

 

In a message dated 5/8/2010 8:04:10 A.M. Central Daylight Time,

sarah5775gmail (DOT) com writes:

I am worried about the Prdisone, because its a weight gainer and I am

already 100 pounds overweight (courtesy of the Lithium I was on for six years)

and had just lost about 15 pounds, and I'm hoping I do not gain it all back

in the next two weeks. Also, the last time I was on a steroid medication

my bipolar went nuts. I had a major manic episode and then a suicidal

depression. I am hoping that it doesnt' get as bad this time, but I'll try to

keep in mind that its only the medication if things do get dicey. >

I'm 30-35 pounds overweight. I've been on Prednisone since I first saw the

rheumatologist and before I actually got the diagnosis. I haven't gained

any additional weight, but it might be because I feel kind of nauseated when

I'm fatigued. So I eat less then. However, my fat has shifted. I saw my PC

doc last week and complained that my weight isn't changing, but that my

shirts are tighter. She said Prednisone was the culprit. She asked if I

thought I was ready for a breast reduction -- it's more like a tummy reduction I

need.

I was relieved with my diagnosis. I went to my PC doc three times with

complaints and it felt good to have the RA doc take me seriously. I went from

barely being able to walk and unable to get out of a chair to being able to

teach my line dance class. I too noticed marked improvement after three

hours.

I am concerned about long-term use. I'm on 5 mg daily. But I know what the

alternative is.

dd

[Guest guest]

HI SARAH,MY NAME IS MELYNDA. I'VE BEEN IN THIS GROUP FOR ABOUT A YEAR OR SO, I

BELIEVE.

I HAVE HAD JRA SINCE I WAS 5YRS.OLD. I WAS TAKING ALOT OF HEAVY MEDICATION.

I'VE BEEN ON PRED. SINCE I WAS 17YRS.OLD. I STARTED OFF AT 10MG. FOR A WHILE.

THEN

AS I GOT OLDER THE DR.PUT ME ON 5MGS. I ALSO TOOK PLAQUENILE 3X's DAILY. NOW I'M

NO

LONGER TAKING IT DUE TO THE FACT; I STARTED TO HAVE " BLURRED " VISION. SO OF

COURSE THAT BOTHERD ME LIKE " KRAZEEEEE. "

SO,I WENT TO MY EYE DR. & SURE ENOUGH, MY EYES WERE GETTING WORSE.

IT'S ALWAYS SOMETHING WITH ME SARAH.. WELL, I GOT OFF THE PLAQUENILE!

HAD TO GET GLASSES CUZ IT WAS SOOOO' BAD, I COULD NOT EVEN WATCH MY DAUGHTER,

ALYSSA PLAY ANY KIND OF SPORT. SAD INDEED I WAS ! I HAVE " ALWAYS " HAD PERFECT

VISION

NOW I DON'T!!!

SO, NOT ONLY DO I HAVE JRA. I HAVE OSTEOPOROSIS,MONOPLEGIA, LAST BUT NOT LEAST

NEUROPATHY... I'M STARTING TO " BELIEVE " THAT TOO MUCH MEDICATION IS BAD FOR

YOUR EYES,LIVER,KIDNEY'S AND HEART......

I GOT REALLY " DEPRESSED " WHEN ALL THIS STARTED, I WAS CRYING ALL THE TIME,I

WANTED

TO BE ALONE, SUICIDAL THOUGHTS, AND SLEEPING ALL THE TIME....

SO FINALLY, WITH THE HELP OF MY FAMILY & FRIENDS. I WAS ABLE TO COPE BETTER

WITH LIFE & ALL IT HAS TOO OFFER. HOWEVER,DON'T GET ME WRONG I STILL HAVE MY

DOWNTIMES & IT HURTS BECAUSE I HAVE ALYSSA TO TAKE CARE OF!

WELL SARAH, I HOPE YOU START FEELING BETTER BOTH PHYSICALLY  & MENTALLY.

I HOPE I HELPED YOU SARAH & NEVER GIVE UP,SWEETEEEE!!

YOU NEVER KNOW WHEN ONE KIND ACT,OR ONE WORD OF " ENCOURAGEMENT " , CAN

CHANGE OR IMPACT A PERSON'S LIFE!! GOD BLESS,~MELYNDA~

 

[ ] How my first visit to the rheumatologist went

Date: Friday, May 7, 2010, 10:02 PM

 

Well, I had my first doctor's appointment today. The doctor seems nice, and he

confirmed the diagnosis that my gp made- it's official, I have RA. Today is my

birthday, and let me tell you, it was not the best birthday present I could have

gotten. At least my mom, who came in with me and heard what he said, can no

longer say that there is nothing wrong with me and the pain is in my head.

According to my blood tests, I have RA and the disease is " very active. " I have

been in excruciating pain so I can attest to that.

The doctor put me on leflunomide- generic for Arava, and Plaquenil. It is weird

because no one in my family has RA. My mom asked the dr if the fact that I have

been on so many medications in the past could have caused this. (I have been on

every antidepressent and mood stabilizer under the sun since I was 16) he said

it was an " interesting question. " So who knows if something I took caused this?

But as far as I'm concerned, it doesn't matter. I have it now. There is no point

in blaming former doctors or whatever, the point is to move forward.

For the pain, he put me on Predisone (10 mg daily the first week, 5 the

second)and said I would have relief within 24 hours. I took it about three hours

ago and I think I'm already experiencing some relief- I was able to eat dinner

without too much pain, whereas for the past few days I ate nothing at all or

very little because it hurt too much to use a fork and knife! It was the worst

pain I can imagine, now its a bit better.

I am worried about the Prdisone, because its a weight gainer and I am already

100 pounds overweight (courtesy of the Lithium I was on for six years) and had

just lost about 15 pounds, and I'm hoping I do not gain it all back in the next

two weeks. Also, the last time I was on a steroid medication my bipolar went

nuts. I had a major manic episode and then a suicidal depression. I am hoping

that it doesnt' get as bad this time, but I'll try to keep in mind that its only

the medication if things do get dicey.

Does anyone have any information about the drugs I am on?