Re: No meds may cause organ damage??????

November 10, 2000

In a message dated 11/10/2000 11:38:00 AM Eastern Standard Time,

Tersinga@... writes:

<< He says that he wants to see if this disease will go into remission

on its own before we start fooling around with drugs. Has anyone else's doc

told them this? Now I'm wondering about hidden organ damage. He wants to see

me every 3 months to check on things. Does that sound reasonable? >>

Hi Terry,

Sorry to hear that you have RA. It's no fun. But, we live in a good era as

there are so many new treatments and drugs on the horizon. I disagree

vehemently with the school of thought that your doctor entertains. It is not

reasonable with RA to wait and see what happens. All the latest research from

this past year has proven that a majority of RA's damage is done during the

first 2 years of the disease. The American College of Rheumatology now

recommends that RA be treated early and very aggressively to try to stop it's

progress in it's tracks. While the drugs are not often easy to deal with, the

effects of RA can be more devastating. If I were you, I'd check out the ACR's

website (http://rheumatology.org); The Arthritis Foundation's website

(http://www.arthritis.org) and Arthritis Insight's website

(http://www.arthritisinsight.com). The last site was built and is contributed

to and maintained by people who have arthritis. They have won many public

awards. It is THE most comprehensive site for non-medical people around. You

will not only find scientific and medical info there, you will find a lot of

personal insight from the members. They also have a couple of rheumatologists

who consult with them. After reading up some on the necessity of treating RA

in it's early stages, you should approach your doctor again about more

aggressive treatment. If he still doesn't agree, I'd go to another

rheumatologist for a 2nd opinion. RA can be mild, moderate or severe. But, in

the early stages it is very difficult to tell which way it will go. RA just

isn't something to mess around with. Good luck and let us know how it goes.

Patty : )

November 10, 2000

At my worst regarding symptoms, a doctor told me the same thing as yours.

He also said " call me in 6 months if things get worse. " I was outraged! I

don't think your doctor's idea is the right course of action. Letting

things progress without medication may speed up erosion of the bone and

other things. Of course all meds have side effects but being passive and

waiting will probably make things worse. Since you've diagnosed with RA,

your anemia may have been a side effect of that. I think a " blood " doctor

may not be able to help the main problem. You may want to try another

rheumatologist. Where do you live?

>From: Tersinga@...

>Reply-Rheumatoid Arthritisegroups

>Rheumatoid Arthritisegroups

>Subject: No meds may cause organ damage??????

>Date: Fri, 10 Nov 2000 11:32:39 EST

>

>In a message dated 11/10/2000 10:40:26 AM Eastern Standard Time,

>kozlowskip@... writes:

>

> > , BUT THE LONG TERM

> > ISSUE IS IF YOU DO NOTHING, AND RA IS A SYSTEMIC DISEASE, OTHER VITAL

> > ORGANS CAN POSSIBLY BE SUBJECTED TO IRREVERSIBLE DAMAGE SUCH AS

> >

>

>I wonder if I got the right advice from my rheumatologist this week. I am

>newly diagnosed with RA because of mild joint pain. My blood showed the RA

>factor and a lot of inflammation and anti body production. My Doc says that

>he doesn't want to rush into any meds for me because I'm not in much pain

>or

>swelling. He says that he wants to see if this disease will go into

>remission

>on its own before we start fooling around with drugs. Has anyone elses doc

>told them this? Now I'm wondering about hidden organ damage. He wants to

>see

>me every 3 months to check on things. Does that sound reasonable?

>Does anyone else have anemia as a result of their RA? What can be done

>about

>the fatigue ? I was thinking of seeing a nutritionist or a doc that

>specializes in " the blood " . I don't know if I trust my rheumatologist.

>Terry

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November 10, 2000

IF YOU HAVE BEEN DIAGNOSED MORE RECENTLY WITH RA YOUR RHEUMATOLOGIST IS

TAKING A CONSERVATIVE APPROACH IN SEEINGIF YOUR RA CAN GO BACK INTO

REMISSION. THIS IS FINE. NOW THE FATIGUE , AS I HAVE EXPERIENCED , CAN BE

DUE TO LOW IRON LEVELS, FROM THE INFLAMATION PROCESS. YOUR BLOODWORK CAN

CONFIRM THIS. WITH REGARD TO THE ORGAN DAMAGE, THIS WOULD DEPEND UPON THE

SEVERITY OF THE RA PROGRESS AND IF LEFT UNTREATED FOR A LONG TIME IT COULD

POTENTIALLY LEAD TO OTHER ORGAN PROBLEMS. I USED TO BE ON THE FAMILY OF

NSAIDS (NON STERIODAL ANTI INFLAMATION DRUGS) , BUT THESE ARE NO LONGER

EFFECTIVE. THIS IS WHY I'M ON METHOTREXATE NOW ( DMARD (DISEASE

MODIFICATION ) DRUGS , TO COMBAT THE RAVAGES OF INFLAMATION. AGAIN WITH

DRUG, MY BLOODWORK MUST BE MONITORED ONCE A MONTH TO ENSURE MY LIVER

ENZYMES STAY WITHIN ALLOWABLES. GIVE YOUR RHEUMATOLOGIST A CHANCE, AND TALK

TO HIM ABOUT THE POTENTIAL OF SYSTEMIC EFFECTS ON YOUR BODY IF RA IS LEFT

TO PROGRESS UNCHECKED. HOPES THIS HELPS YOU, NO CAUSE FOR

ALARM.................PK.............

November 10, 2000

In a message dated 11/10/2000 3:25:26 PM Eastern Standard Time, sdenicola@... writes:

You may want to try another rheumatologist. Where do you live?

I live on Long Island, New York. I guess I better read up on this a little more. I just figured that if I didn't feel any pain in my joints , then there wasn't much damage "happening". I thought pain meant damage. I will go for another opinion. Terry

November 10, 2000

Hi Terry, I had the same experience when I was first diagnosed with ra.

I'm sure your doctor is just being cautious, and doesn't want to start meds you don't need yet.

Yes I also have anemia. I started taking fish oil wich seems to help.

Fish oil is an herb, wich helps with fiteeg.

Hope this helps,

Diane.

-----Original Message-----From: Tersinga@... <Tersinga@...>Rheumatoid Arthritisegroups <Rheumatoid Arthritisegroups>Date: Friday, November 10, 2000 11:37 AMSubject: No meds may cause organ damage??????In a message dated 11/10/2000 10:40:26 AM Eastern Standard Time, kozlowskip@... writes:

, BUT THE LONG TERM ISSUE IS IF YOU DO NOTHING, AND RA IS A SYSTEMIC DISEASE, OTHER VITAL ORGANS CAN POSSIBLY BE SUBJECTED TO IRREVERSIBLE DAMAGE SUCH AS HEART, KIDNEY, LUNGS, LIVER. THIS IS NO DISEASE TO FOOL AROUND I wonder if I got the right advice from my rheumatologist this week. I am newly diagnosed with RA because of mild joint pain. My blood showed the RA factor and a lot of inflammation and anti body production. My Doc says that he doesn't want to rush into any meds for me because I'm not in much pain or swelling. He says that he wants to see if this disease will go into remission on its own before we start fooling around with drugs. Has anyone elses doc told them this? Now I'm wondering about hidden organ damage. He wants to see me every 3 months to check on things. Does that sound reasonable? Does anyone else have anemia as a result of their RA? What can be done about the fatigue ? I was thinking of seeing a nutritionist or a doc that specializes in " the blood " . I don't know if I trust my rheumatologist. Terry

November 10, 2000

Long Island, NY! I grew up & lived in Queens until this June. My family

still lives there. Try Dr. Sullivan. Her address is 42-23

Francis Blvd. , Bayside, NY (Queens) 11361. Her phone number is (718)

224-7186. She's excellent. Tell her I referred you. She's on top of

current research plus treating the whole patient instead of just symptoms.

She takes all insurances. If you don't have insurance, I think her visits

are about $150 each but I'm not sure. I highly recommend her.

Good luck. Sometimes it takes 3-4 weeks to get a visit with her. If you

decide to see her, I could call & see if the nurses can squeeze you in. You

can email me privately for specific questions.

Take care,