The more I learn....

March 10, 2009

Lately I have been trying to learn medical reasons why I have RA,

and the more I read and write down and keep track of what everything

is, from an antigen to t-cells to seronegative to nodules to blood tests

to medications and benefits and side effects, the more defensless and

uneducated I feel.

I have never kept track or requested copies of my blood tests.

Tomorrow I see my Rheumatologist for the first time in 3 months, and

I am going to request them. She will only have them as far back as last

year about this time. Records from my previous rheumatologist are lost.

I remember my last rheumatologist has said my Rh factor was

-653. I still do not know what this is or means or what is normal.

Not that it really even matters.

I was diagnosed with RA in 1991 and was under the care of a

rheumatologist from 1991 to 1993. Over those two years, I was given a

cortisone shot almost every month along with prescriptions ranging from

feldene to plaquinil to prednisone. When my rheumatologist wanted to

start me on gold shots and gold pills, I sought the care of a

chiropractor. I didn't like how any of these drugs made me feel

internally compared to the constant pain I was trying to wrap my mind

around physically and mentally everyday.

I believe at that time it was probably a good thing I did not have the

choice to remain under the care of a rheumatologist. I lost my

insurance and had no alternative but to self medicate. So, for 12 years

that is what I did. Self medication involved everything from vitamins

and minerals to over the counter pain relivers to alcohol and marijuana.

Needless to say, there were many, many a day I didn't think I was going

to see age 40.

In 2004, I began the process of applying for disability. I applied for

Medicade because I needed medical proof of my condition, as if my hands,

feet, and elbows were not proof enough of what RA can do. I was granted

Medicaid in 2005 started seeing the same Rheumatologist who had first

diagnosed me. I was given a cortisone shot, sometimes 2 every month and

was prescribed prednisone, then methotrexate, and just couldn't deal

with the internal problems again. I began Remicaide treatments and had

two infusions when I temporially lost medical coverage. I thought I was

going to die.

By the time my medical coverage was in the process of being reinstated,

my rheumatologist had become deathly ill and was forced to discontinue

his practice. I paid $100.00 to be seen by the rheumatologist who took

over his practice. She wanted to give me 4 cortisone injections in one

hand, and 5 in the other. But when she found out I was not fully

insured she could do nothing.

I never went back.

I started seeing my current Rheumatologist in March 2008 which is when I

was granted disability and medicare benefits. My first two visits I was

given double cortisone injections and she started me on Humira. I tried

prednisone and methotrexate for about 2 weeks each again, but I just

couldn't deal with the stomach pains and headaches long enough to see

any benefits. Instead I just took Aleve.

I didn't really feel the full effects of Humira until around August.

The swelling in my joints seemed to being going down and my pain level

went down a degree or two.

Along with Humira, my doctor prescribed Arava in August 2008. I started

taking 20 mg a day. I didn't really feel any difference until around

the end of October. The swelling in my joints seemed to be gone, but

what remains now are fused joints, many a nodule, and a different kind

of pain.

So what kind of pain is better? No pain for sure, but I do not know any

person diagnosed with RA who has little to no pain, even on meds.

As of right now, I know I would rather be on Humira than not. I realize

this every week before I am supposed to give myself a shot, when the

real pain starts to show itself slowly until I get to inject again.

Arava is a whole other medication I'm not to sure I want to continue,

although it seems kind of late at this point because after ingesting it,

stays in your body for 2 years.

So back to the more I learn....the possibility that Arava is a human

carcinogen (carcinogen refers to any substance, radionuclide or

radiation that is an agent directly involved in the promotion of cancer

or in the increase of it propagation) not to mention the additional 12

active ingredients of Arava which inclulde polyethylene glycol which is

a form of ether, an alcohol, like used in antifreeze; povodone, which is

a element of iodine which is in chloruform....I have been asking myself

more and more " what should I do? " But, I have to say from my point of

view, if you haven't taken Arava yet, don't start. If I would have

known I probably wouldn't have taken my first pill.

I wish all in this group the best, and thanks for listening (or

reading). When I receive copies of my labs I will try and post just for

comparison sake.

(musiclvr3237)

March 11, 2009

,

I am currently on Arava and feel like you. It really isn't working for me so it

will probably be stopped in the next month. I do know (if you look up Arava on

drugs.com) you can find that there is a washout proceedure that takes the drug

out of your system so you don't have to wait the 2 years. I am going to make my

doctor give me that stuff because if the drug didn't work properly then there is

no reason I want it floating around in my system for 2 more years.

>

> Lately I have been trying to learn medical reasons why I have RA,

> and the more I read and write down and keep track of what everything

> is, from an antigen to t-cells to seronegative to nodules to blood tests

> to medications and benefits and side effects, the more defensless and

> uneducated I feel.

> I have never kept track or requested copies of my blood tests.

> Tomorrow I see my Rheumatologist for the first time in 3 months, and

> I am going to request them. She will only have them as far back as last

> year about this time. Records from my previous rheumatologist are lost.

> I remember my last rheumatologist has said my Rh factor was

> -653. I still do not know what this is or means or what is normal.

> Not that it really even matters.

> I was diagnosed with RA in 1991 and was under the care of a

> rheumatologist from 1991 to 1993. Over those two years, I was given a

> cortisone shot almost every month along with prescriptions ranging from

> feldene to plaquinil to prednisone. When my rheumatologist wanted to

> start me on gold shots and gold pills, I sought the care of a

> chiropractor. I didn't like how any of these drugs made me feel

> internally compared to the constant pain I was trying to wrap my mind

> around physically and mentally everyday.

> I believe at that time it was probably a good thing I did not have the

> choice to remain under the care of a rheumatologist. I lost my

> insurance and had no alternative but to self medicate. So, for 12 years

> that is what I did. Self medication involved everything from vitamins

> and minerals to over the counter pain relivers to alcohol and marijuana.

> Needless to say, there were many, many a day I didn't think I was going

> to see age 40.

> In 2004, I began the process of applying for disability. I applied for

> Medicade because I needed medical proof of my condition, as if my hands,

> feet, and elbows were not proof enough of what RA can do. I was granted

> Medicaid in 2005 started seeing the same Rheumatologist who had first

> diagnosed me. I was given a cortisone shot, sometimes 2 every month and

> was prescribed prednisone, then methotrexate, and just couldn't deal

> with the internal problems again. I began Remicaide treatments and had

> two infusions when I temporially lost medical coverage. I thought I was

> going to die.

> By the time my medical coverage was in the process of being reinstated,

> my rheumatologist had become deathly ill and was forced to discontinue

> his practice. I paid $100.00 to be seen by the rheumatologist who took

> over his practice. She wanted to give me 4 cortisone injections in one

> hand, and 5 in the other. But when she found out I was not fully

> insured she could do nothing.

> I never went back.

> I started seeing my current Rheumatologist in March 2008 which is when I

> was granted disability and medicare benefits. My first two visits I was

> given double cortisone injections and she started me on Humira. I tried

> prednisone and methotrexate for about 2 weeks each again, but I just

> couldn't deal with the stomach pains and headaches long enough to see

> any benefits. Instead I just took Aleve.

> I didn't really feel the full effects of Humira until around August.

> The swelling in my joints seemed to being going down and my pain level

> went down a degree or two.

> Along with Humira, my doctor prescribed Arava in August 2008. I started

> taking 20 mg a day. I didn't really feel any difference until around

> the end of October. The swelling in my joints seemed to be gone, but

> what remains now are fused joints, many a nodule, and a different kind

> of pain.

> So what kind of pain is better? No pain for sure, but I do not know any

> person diagnosed with RA who has little to no pain, even on meds.

> As of right now, I know I would rather be on Humira than not. I realize

> this every week before I am supposed to give myself a shot, when the

> real pain starts to show itself slowly until I get to inject again.

> Arava is a whole other medication I'm not to sure I want to continue,

> although it seems kind of late at this point because after ingesting it,

> stays in your body for 2 years.

> So back to the more I learn....the possibility that Arava is a human

> carcinogen (carcinogen refers to any substance, radionuclide or

> radiation that is an agent directly involved in the promotion of cancer

> or in the increase of it propagation) not to mention the additional 12

> active ingredients of Arava which inclulde polyethylene glycol which is

> a form of ether, an alcohol, like used in antifreeze; povodone, which is

> a element of iodine which is in chloruform....I have been asking myself

> more and more " what should I do? " But, I have to say from my point of

> view, if you haven't taken Arava yet, don't start. If I would have

> known I probably wouldn't have taken my first pill.

> I wish all in this group the best, and thanks for listening (or

> reading). When I receive copies of my labs I will try and post just for

> comparison sake.

> (musiclvr3237)

>

March 11, 2009

,

I'm not aware of any human studies which demonstrate that Arava

(leflunomide) may be a carcinogen. This is the information from the

manufacturer on animal studies:

" Carcinogenesis, Mutagenesis, and Impairment of Fertility

No evidence of carcinogenicity was observed in a 2-year bioassay in

rats at oral doses of leflunomide up to the maximally tolerated dose

of 6 mg/kg (approximately 1/40 the maximum human M1 systemic exposure

based on AUC). However, male mice in a 2-year bioassay exhibited an

increased incidence in lymphoma at an oral dose of 15 mg/kg, the

highest dose studied (1.7 times the human M1 exposure based on AUC).

Female mice, in the same study, exhibited a dose-related increased

incidence of bronchoalveolar adenomas and carcinomas combined

beginning at 1.5 mg/kg (approximately 1/10 the human M1 exposure based

on AUC). The significance of the findings in mice relative to the

clinical use of leflunomide is not known.

Leflunomide was not mutagenic in the Ames Assay, the Unscheduled DNA

Synthesis Assay, or in the HGPRT Gene Mutation Assay. In addition,

Leflunomide was not clastogenic in the in vivo Mouse Micronucleus

Assay nor in the in vivo Cytogenetic Test in Chinese Hamster Bone

Marrow Cells. However, 4-trifluoromethylaniline (TFMA), a minor

metabolite of leflunomide, was mutagenic in the Ames Assay and in the

HGPRT Gene Mutation Assay, and was clastogenic in the in vitro Assay

for Chromosome Aberrations in the Chinese Hamster Cells. TFMA was not

clastogenic in the in vivo Mouse Micronucleus Assay nor in the in vivo

Cytogenetic Test in Chinese Hamster Bone Marrow Cells. Leflunomide had

no effect on fertility in either male or female rats at oral doses up

to 4 mg/kg (approximately 1/30 the human M1 exposure based on AUC). "

http://products.sanofi-aventis.us/arava/arava.pdf

The Arava ingredients you are referring to are inactive.

Polyethylene glycol is not used in antifreeze, propylene glycol is.

Povidone is, according to Merriam-Webster, polyvinylpyrrolidone, " a

water-soluble chemically inert solid polymer (-CH2CHC4H6NO-)n used

chiefly in medicine as a vehicle for drugs (as iodine) and especially

formerly as a plasma expander--called also povidone. "

Povidone does not contain iodine and is not related to chloroform (CHCl3).

Not an MD

On Tue, Mar 10, 2009 at 1:25 PM, musiclvr3237 <musiclvr3237@...> wrote: