New Member - Saying goodbye to drugs???

[Guest guest]

Hello,

I was diagnoised with RA in 1996. It presented itself with the

fatigue more than the stiffness and aches, those came later. My

doctor first only put me on Feldene, then Plaquenil and then

SulfaSalzsine. Never cut one back, had me take all three. I don't

like all these pills. I have only had one flare up and based on a

disagreement with my doctor am considering going off meds. I know,

dangerous, bad idea but here is why?

1. I have lost my insurance, don't quailify for assistance and my

drugs are expensive.

2. Also, Feldene he didn't want me taking daily and that was no

problem going off of. The sulfasalazine he had me up to three a day.

I started developing these nasty lumps on my shins and ankle. They

really hurt and they turned black and blue. My RA doctor first

said, " oh, those are bug bites. " Um, they were really big! Then he

said, " Oh, Cybastious cyst " and gave me an antiboitic. I made an

appointment with a dermatolgist who determined Eurthymn Nosdosums

(forgive my spelling) basically inflamed fat globs and caused by a

number of things including taking sulfa drugs. Dermatologist ruled

out 5 other possible causes. Suggested a break from Sulfa drug to see

if that was the cause.

My RA doc went crazy and told me no way, he demanded a biopsy(which I

refused), blah, blah....I started wondering. First I cut one a day,

for three months, felt fine, blood work was fine. Then I cut another,

felt fine, blood work fine. I am on the last of the bottle, no new

script available. Old RA doc is angry with me and told me not to come

back. I have been off plaquenil for a month.

Oh, the bumps disappeared after one month of taking away One sulfa

pill of the three a day. Go figure.

I am nervous as the winter months are always hard on me and they are

around the corner. I have NEVER been put on a RA diet, given therepy,

given alternatives to my drugs.

I gained so much weight after I was diagnoised. I can't seem to get

it off. I wonder if these drugs cause weight gain. Doctor told me no.

Once I get insurance again, I would like another RA doctor but in the

mean time, I welcome advice in this area.

Diane/MI

[Guest guest]

Hi Diane,

Sorry to hear about all you've been through. As for weight gain, I read

somewhere that MTX can cause weight gain (or loss) and I've gained

weight as well. I think the Plaquenil makes me gain weight, as well as

anti inflammatory drugs. Just my opinion. a and know a lot

more about it.

Love and hugs,

Carol

[ ] New Member - Saying goodbye to drugs???

Hello,

I was diagnoised with RA in 1996. It presented itself with the

fatigue more than the stiffness and aches, those came later. My

doctor first only put me on Feldene, then Plaquenil and then

SulfaSalzsine. Never cut one back, had me take all three. I don't

like all these pills. I have only had one flare up and based on a

disagreement with my doctor am considering going off meds. I know,

dangerous, bad idea but here is why?

1. I have lost my insurance, don't quailify for assistance and my

drugs are expensive.

2. Also, Feldene he didn't want me taking daily and that was no

problem going off of. The sulfasalazine he had me up to three a day.

I started developing these nasty lumps on my shins and ankle. They

really hurt and they turned black and blue. My RA doctor first

said, " oh, those are bug bites. " Um, they were really big! Then he

said, " Oh, Cybastious cyst " and gave me an antiboitic. I made an

appointment with a dermatolgist who determined Eurthymn Nosdosums

(forgive my spelling) basically inflamed fat globs and caused by a

number of things including taking sulfa drugs. Dermatologist ruled

out 5 other possible causes. Suggested a break from Sulfa drug to see

if that was the cause.

My RA doc went crazy and told me no way, he demanded a biopsy(which I

refused), blah, blah....I started wondering. First I cut one a day,

for three months, felt fine, blood work was fine. Then I cut another,

felt fine, blood work fine. I am on the last of the bottle, no new

script available. Old RA doc is angry with me and told me not to come

back. I have been off plaquenil for a month.

Oh, the bumps disappeared after one month of taking away One sulfa

pill of the three a day. Go figure.

I am nervous as the winter months are always hard on me and they are

around the corner. I have NEVER been put on a RA diet, given therepy,

given alternatives to my drugs.

I gained so much weight after I was diagnoised. I can't seem to get

it off. I wonder if these drugs cause weight gain. Doctor told me no.

Once I get insurance again, I would like another RA doctor but in the

mean time, I welcome advice in this area.

Diane/MI

[Guest guest]

Diane,

What a creep doctor! I would think he's be thrilled that you found out what

was causing the lumps!

I have links to both diet and alternative treatments on my website:

http://rheumatoid.arthritis.freehosting.net/Diet.html

http://rheumatoid.arthritis.freehosting.net/alternitive.html

You've been on the same medications since 1996? In that time you've only

had ONE flare? Do you know what your diagnosis of RA is based on? Do you

have copies of your blood tests?

a

> Hello,

>

> I was diagnoised with RA in 1996. It presented itself with the

> fatigue more than the stiffness and aches, those came later. My

> doctor first only put me on Feldene, then Plaquenil and then

> SulfaSalzsine. Never cut one back, had me take all three. I don't

> like all these pills. I have only had one flare up and based on a

> disagreement with my doctor am considering going off meds. I know,

> dangerous, bad idea but here is why?

>

> 1. I have lost my insurance, don't quailify for assistance and my

> drugs are expensive.

>

> 2. Also, Feldene he didn't want me taking daily and that was no

> problem going off of. The sulfasalazine he had me up to three a day.

> I started developing these nasty lumps on my shins and ankle. They

> really hurt and they turned black and blue. My RA doctor first

> said, " oh, those are bug bites. " Um, they were really big! Then he

> said, " Oh, Cybastious cyst " and gave me an antiboitic. I made an

> appointment with a dermatolgist who determined Eurthymn Nosdosums

> (forgive my spelling) basically inflamed fat globs and caused by a

> number of things including taking sulfa drugs. Dermatologist ruled

> out 5 other possible causes. Suggested a break from Sulfa drug to see

> if that was the cause.

>

> My RA doc went crazy and told me no way, he demanded a biopsy(which I

> refused), blah, blah....I started wondering. First I cut one a day,

> for three months, felt fine, blood work was fine. Then I cut another,

> felt fine, blood work fine. I am on the last of the bottle, no new

> script available. Old RA doc is angry with me and told me not to come

> back. I have been off plaquenil for a month.

>

> Oh, the bumps disappeared after one month of taking away One sulfa

> pill of the three a day. Go figure.

>

> I am nervous as the winter months are always hard on me and they are

> around the corner. I have NEVER been put on a RA diet, given therepy,

> given alternatives to my drugs.

>

> I gained so much weight after I was diagnoised. I can't seem to get

> it off. I wonder if these drugs cause weight gain. Doctor told me no.

> Once I get insurance again, I would like another RA doctor but in the

> mean time, I welcome advice in this area.

>

> Diane/MI

>

>

>

>

>

>

>

>

[Guest guest]

Welcome, Diane!

I agree with a. That rheumatologist has to go. Please look for a

rheumatologist you can trust and work with.

If you do have RA, I wouldn't go off all meds. There are patient

assistance programs available through the manufacturers if you are not

able to afford your medications. A good rheumatologist should be able to

offer advice in this area.

Re: [ ] New Member - Saying goodbye to drugs???

> Diane,

> What a creep doctor! I would think he's be thrilled that you found

out what

> was causing the lumps!

> I have links to both diet and alternative treatments on my website:

>

> http://rheumatoid.arthritis.freehosting.net/Diet.html

> http://rheumatoid.arthritis.freehosting.net/alternitive.html

>

> You've been on the same medications since 1996? In that time you've

only

> had ONE flare? Do you know what your diagnosis of RA is based on? Do

you

> have copies of your blood tests?

> a

>

>

>

>

>

>

> > Hello,

> >

> > I was diagnoised with RA in 1996. It presented itself with the

> > fatigue more than the stiffness and aches, those came later. My

> > doctor first only put me on Feldene, then Plaquenil and then

> > SulfaSalzsine. Never cut one back, had me take all three. I don't

> > like all these pills. I have only had one flare up and based on a

> > disagreement with my doctor am considering going off meds. I know,

> > dangerous, bad idea but here is why?

> >

> > 1. I have lost my insurance, don't quailify for assistance and my

> > drugs are expensive.

> >

> > 2. Also, Feldene he didn't want me taking daily and that was no

> > problem going off of. The sulfasalazine he had me up to three a day.

> > I started developing these nasty lumps on my shins and ankle. They

> > really hurt and they turned black and blue. My RA doctor first

> > said, " oh, those are bug bites. " Um, they were really big! Then he

> > said, " Oh, Cybastious cyst " and gave me an antiboitic. I made an

> > appointment with a dermatolgist who determined Eurthymn Nosdosums

> > (forgive my spelling) basically inflamed fat globs and caused by a

> > number of things including taking sulfa drugs. Dermatologist ruled

> > out 5 other possible causes. Suggested a break from Sulfa drug to

see

> > if that was the cause.

> >

> > My RA doc went crazy and told me no way, he demanded a biopsy(which

I

> > refused), blah, blah....I started wondering. First I cut one a day,

> > for three months, felt fine, blood work was fine. Then I cut

another,

> > felt fine, blood work fine. I am on the last of the bottle, no new

> > script available. Old RA doc is angry with me and told me not to

come

> > back. I have been off plaquenil for a month.

> >

> > Oh, the bumps disappeared after one month of taking away One sulfa

> > pill of the three a day. Go figure.

> >

> > I am nervous as the winter months are always hard on me and they are

> > around the corner. I have NEVER been put on a RA diet, given

therepy,

> > given alternatives to my drugs.

> >

> > I gained so much weight after I was diagnoised. I can't seem to get

> > it off. I wonder if these drugs cause weight gain. Doctor told me

no.

> > Once I get insurance again, I would like another RA doctor but in

the

> > mean time, I welcome advice in this area.

> >

> > Diane/MI

[Guest guest]

HI DAIANE/ M1

[Guest guest]

HI DIANE

DONT OFTEN WRITE ON HERE

I JUTS WANTED TO SAY THAT I HAVE HAD RA NOW FOR ABOUT 30YRS.

I WAS TOLD BY MY OWN DOCTOR THAT THE MEDS THEY GIVE ME ARE NOT A CURE !!!!!! AND THAT IT WAS ENTIRELY UP TO ME IF I WANTED TO TAKE THEM

I HAVE TRIED ALL KINDS OF MEDS OVER THE YRS METHOTREXATE ECT.........AND FOUND I SUFFERED MORE WITH THE SIDE AFFECTS ..SO I DECIDED TO STAY OFF THEM.

ALL I TAKE NOW IS NAPROXEN .CO-DYDROMAL AND AN INJECTION OF KENALOUGE WHEN I START TO FLAIR..

LOVE JOYCE

[Guest guest]

a,

I will check out the links on your website. No, I don't have copies

of my bloodwork.

My arm was going numb and my fingers tingling when a general pract.

doc told me Carpal Tunnel, which I thought was stupid. I was a stay

at home mom who didn't do anything repetitive do develop carpal

tunnel. He didn't offer any suggestions other than motrin and rest.

The whole arm would go numb when I was driving and started scaring

me. I was always, always tired. I felt like I was getting the flu,

would take a nap, sleep for days, just couldn't shake it. I went to a

Internal Medicine Doctor who ran test on everything, ruled out thyroid

(I am always getting checked for that) ruled out anemia (I used to be

border line anemitic) said everything came back great except, you

have Rhuematoid Arthitis. " Take motrin for pain and we will check

your blood in a year.) That was it. I freaked out.

Went to the library and got books on it. Got an RA doctor who reran

the test. In the beginning, who only offered the feldene for the

swelling. I felt good for months. Then draggy again, he said

the " numbers were up " and added another drug and so on, and so on.

The only flare up I had, full blown exhaustion like in the beginning

was in March of 1999 or something. He had wanted to start me on

sulfasalazine and I said that was too many pills. A few weeks later,

I got sick, he started me on sulfa, adding a pill each day until I

felt better. I kept waiting for him to start cutting back on

something instead of continuing to take so many pills. (I realize

other folks take more but sulfasalazine is huge pills that always

make me gag and three a day was wearing on me.)

I hvae been concerned about liver or eye damage with these drugs. I

am only in my 40's and really don't want to lose either my liver or

my eyes.

I didn't doubt the doctor until the whole lumps on my leg thing.

These lumps hurt. It was like you whacked your ankle on something

hard and got a big hard lump and a bruise. It would even hurt to flex

my toes. I don't know how he got bug bite out of seeing them the

first time.

Just if he is giving someone drugs that can cause something like this

as a side effect, shouldn't he know what the side effects look

like???

Should I go and get my file from his office? It's legalling mine

isn't it? My test and such??

Diane

[Guest guest]

You will have to sign a request for your file, and they should give you a copy.

Technically, even if it is your health history, the file itself belongs to the

medical facility. By law, though, they have to release a copy to either you, or

your provider.

Noreen

[ ] Re: New Member - Saying goodbye to drugs???

a,

I will check out the links on your website. No, I don't have copies

of my bloodwork.

My arm was going numb and my fingers tingling when a general pract.

doc told me Carpal Tunnel, which I thought was stupid. I was a stay

at home mom who didn't do anything repetitive do develop carpal

tunnel. He didn't offer any suggestions other than motrin and rest.

The whole arm would go numb when I was driving and started scaring

me. I was always, always tired. I felt like I was getting the flu,

would take a nap, sleep for days, just couldn't shake it. I went to a

Internal Medicine Doctor who ran test on everything, ruled out thyroid

(I am always getting checked for that) ruled out anemia (I used to be

border line anemitic) said everything came back great except, you

have Rhuematoid Arthitis. " Take motrin for pain and we will check

your blood in a year.) That was it. I freaked out.

Went to the library and got books on it. Got an RA doctor who reran

the test. In the beginning, who only offered the feldene for the

swelling. I felt good for months. Then draggy again, he said

the " numbers were up " and added another drug and so on, and so on.

The only flare up I had, full blown exhaustion like in the beginning

was in March of 1999 or something. He had wanted to start me on

sulfasalazine and I said that was too many pills. A few weeks later,

I got sick, he started me on sulfa, adding a pill each day until I

felt better. I kept waiting for him to start cutting back on

something instead of continuing to take so many pills. (I realize

other folks take more but sulfasalazine is huge pills that always

make me gag and three a day was wearing on me.)

I hvae been concerned about liver or eye damage with these drugs. I

am only in my 40's and really don't want to lose either my liver or

my eyes.

I didn't doubt the doctor until the whole lumps on my leg thing.

These lumps hurt. It was like you whacked your ankle on something

hard and got a big hard lump and a bruise. It would even hurt to flex

my toes. I don't know how he got bug bite out of seeing them the

first time.

Just if he is giving someone drugs that can cause something like this

as a side effect, shouldn't he know what the side effects look

like???

Should I go and get my file from his office? It's legalling mine

isn't it? My test and such??

Diane

[Guest guest]

If you get bad enough that you can't function you might consider Prednisone or something like that. It's a relatively inexpensive but strong anti-inflammatory that usually helps quickly with pain and stiffness. However, most people gain weight when taking it and it has other bad side effeects and does not slow down or stop the permanent joint damage that usually accompanies untreated RA. Most people have a love/hate relationship with Prednisone and try to get off it if they can but run for it when they need it to keep functioning. Good luck and God bless.

----- Original Message -----

From: itsmemrsb2

Rheumatoid Arthritis

Sent: Tuesday, September 30, 2003 5:44 AM

Subject: New Member - Saying goodbye to drugs???

Hello, I was diagnoised with RA in 1996. It presented itself with the fatigue more than the stiffness and aches, those came later. My doctor first only put me on Feldene, then Plaquenil and then SulfaSalzsine. Never cut one back, had me take all three. I don't like all these pills. I have only had one flare up and based on a disagreement with my doctor am considering going off meds. I know, dangerous, bad idea but here is why?1. I have lost my insurance, don't quailify for assistance and my drugs are expensive. 2. Also, Feldene he didn't want me taking daily and that was no problem going off of. The sulfasalazine he had me up to three a day. I started developing these nasty lumps on my shins and ankle. They really hurt and they turned black and blue. My RA doctor first said, "oh, those are bug bites." Um, they were really big! Then he said, "Oh, Cybastious cyst" and gave me an antiboitic. I made an appointment with a dermatolgist who determined Eurthymn Nosdosums (forgive my spelling) basically inflamed fat globs and caused by a number of things including taking sulfa drugs. Dermatologist ruled out 5 other possible causes. Suggested a break from Sulfa drug to see if that was the cause. My RA doc went crazy and told me no way, he demanded a biopsy(which I refused), blah, blah....I started wondering. First I cut one a day, for three months, felt fine, blood work was fine. Then I cut another, felt fine, blood work fine. I am on the last of the bottle, no new script available. Old RA doc is angry with me and told me not to come back. I have been off plaquenil for a month. Oh, the bumps disappeared after one month of taking away One sulfa pill of the three a day. Go figure.I am nervous as the winter months are always hard on me and they are around the corner. I have NEVER been put on a RA diet, given therepy, given alternatives to my drugs. I gained so much weight after I was diagnoised. I can't seem to get it off. I wonder if these drugs cause weight gain. Doctor told me no. Once I get insurance again, I would like another RA doctor but in the mean time, I welcome advice in this area. Diane/MI

[Guest guest]

Diane,

Diagnosing RA isn't done just by blood tests. Rheumatic diseases are

difficult to diagnose and are often misdiagnosed. Some people wait years

for a proper diagnosis. RA is diagnosed by a clinical diagnosis. It's

based on the history and what the physician finds on x-ray, blood tests,

physical examination etc. It is not diagnosed just by blood. Many people

test positive for RA that don't have it and many people that do have RA,

test negative in their blood. It can be very frustrating to both the doctor

and the patient. Do you have any erosion?

You have the right to your medical records. I get a copy of my blood tests

and x-rays to keep in my folder at home.

s Hopkins - Arthritis Diagnostic & Therapeutic Guidelines

Diagnostic and therapeutic guidelines for arthritis.

http://www.hopkins-arthritis.som.jhmi.edu/edu/acr/acr.html

Rheumatoid Arthritis - Diagnosis and evaluation from University of

Washington

http://www.orthop.washington.edu/arthritis/types/rheumatoid/02

Diagnosis of Arthritis

http://healthlink.mcw.edu/article/924811109.html

Misdiagnosis of Rheumatoid arthritis & Alternative diagnoses list for

Rheumatoid arthritis

http://www.wrongdiagnosis.com/r/Rheumatoid Arthritis/misdiag.htm

a

> a,

> I will check out the links on your website. No, I don't have copies

> of my bloodwork.

>

> My arm was going numb and my fingers tingling when a general pract.

> doc told me Carpal Tunnel, which I thought was stupid. I was a stay

> at home mom who didn't do anything repetitive do develop carpal

> tunnel. He didn't offer any suggestions other than motrin and rest.

>

> The whole arm would go numb when I was driving and started scaring

> me. I was always, always tired. I felt like I was getting the flu,

> would take a nap, sleep for days, just couldn't shake it. I went to a

> Internal Medicine Doctor who ran test on everything, ruled out thyroid

> (I am always getting checked for that) ruled out anemia (I used to be

> border line anemitic) said everything came back great except, you

> have Rhuematoid Arthitis. " Take motrin for pain and we will check

> your blood in a year.) That was it. I freaked out.

>

> Went to the library and got books on it. Got an RA doctor who reran

> the test. In the beginning, who only offered the feldene for the

> swelling. I felt good for months. Then draggy again, he said

> the " numbers were up " and added another drug and so on, and so on.

>

> The only flare up I had, full blown exhaustion like in the beginning

> was in March of 1999 or something. He had wanted to start me on

> sulfasalazine and I said that was too many pills. A few weeks later,

> I got sick, he started me on sulfa, adding a pill each day until I

> felt better. I kept waiting for him to start cutting back on

> something instead of continuing to take so many pills. (I realize

> other folks take more but sulfasalazine is huge pills that always

> make me gag and three a day was wearing on me.)

>

> I hvae been concerned about liver or eye damage with these drugs. I

> am only in my 40's and really don't want to lose either my liver or

> my eyes.

>

> I didn't doubt the doctor until the whole lumps on my leg thing.

> These lumps hurt. It was like you whacked your ankle on something

> hard and got a big hard lump and a bruise. It would even hurt to flex

> my toes. I don't know how he got bug bite out of seeing them the

> first time.

>

> Just if he is giving someone drugs that can cause something like this

> as a side effect, shouldn't he know what the side effects look

> like???

>

> Should I go and get my file from his office? It's legalling mine

> isn't it? My test and such??

>

> Diane

>

>

>

>

[Guest guest]

This is an excellent point, a. We can't say it enough - the blood

tests can be useful, but they seldom carry enough weight to make or

break a diagnosis. This goes for lupus, too. There is a lot of confusion

about the ANA test. A positive ANA does not necessarily mean lupus.

Re: [ ] Re: New Member - Saying goodbye to drugs???

> Diane,

> Diagnosing RA isn't done just by blood tests. Rheumatic diseases are

> difficult to diagnose and are often misdiagnosed. Some people wait

years

> for a proper diagnosis. RA is diagnosed by a clinical diagnosis.

It's

> based on the history and what the physician finds on x-ray, blood

tests,

> physical examination etc. It is not diagnosed just by blood. Many

people

> test positive for RA that don't have it and many people that do have

RA,

> test negative in their blood. It can be very frustrating to both the

doctor

> and the patient. Do you have any erosion?

> You have the right to your medical records. I get a copy of my blood

tests

> and x-rays to keep in my folder at home.

>

> s Hopkins - Arthritis Diagnostic & Therapeutic Guidelines

> Diagnostic and therapeutic guidelines for arthritis.

> http://www.hopkins-arthritis.som.jhmi.edu/edu/acr/acr.html

>

> Rheumatoid Arthritis - Diagnosis and evaluation from University of

> Washington

> http://www.orthop.washington.edu/arthritis/types/rheumatoid/02

>

> Diagnosis of Arthritis

> http://healthlink.mcw.edu/article/924811109.html

>

> Misdiagnosis of Rheumatoid arthritis & Alternative diagnoses list for

> Rheumatoid arthritis

> http://www.wrongdiagnosis.com/r/Rheumatoid Arthritis/misdiag.htm

>

> a