Re: ARAVA anyone?

[Guest guest]

Hi Friends

Do we have anyone who is either on ARAVA or who has taken it for RA.? I am

trying to find out amongst our group how effective this medication is for

those who have taken it. I have taken it for only 2 weeks in the past but had

to stop due to a rash on both arms and hair loss that lasted 4 mo....

thanks in advance to those who reply

Joanne

PS: I am still gathering any info from members of our group who wish to share

success or failure stories regarding what medication or treatment is working

or has worked for them to make their disease considerably better. So far I

have only heard from 2 people. I think this would be of great interest to all

thanks

[Guest guest]

Dear Joanne,

I was dx with R/A just a short time ago. I was first placed on plaquenil for

one month with predinsone. The predinsome cause me more swelling and more pain.

I have had a very active diseas I think...being in continued pain for this full

year. Sept 13th I was given Arava. I have thus far had no real reaction to the

meds and no releif from the pain. If anything I now have pain in places I did

not have before. When I call the docs office they told me this *could* happen.

My next appointment is October 11. It is becoming harder and harder for me do

do things....I am not sure when I will get any relief from this diseas. At this

point I will accept most anything to get a few moments of peace.

Myra, Atlanta GA

boopstdo@... wrote:Hi Friends

Do we have anyone who is either on ARAVA or who has taken it for RA.? I am

trying to find out amongst our group how effective this medication is for

those who have taken it. I have taken it for only 2 weeks in the past but had

to stop due to a rash on both arms and hair loss that lasted 4 mo....

thanks in advance to those who reply

Joanne

PS: I am still gathering any info from members of our group who wish to share

success or failure stories regarding what medication or treatment is working

or has worked for them to make their disease considerably better. So far I

have only heard from 2 people. I think this would be of great interest to all

thanks

[Guest guest]

Hi Joanne,

I have been on Arava for about 1 year with no real results. So I am probably

not the one to encourage you. Then I went to Enbrel, which worked for 2

years and then finally went to the Remicade which has caused a very serious

condition called sepsis that I am trying to fight to save my life.

Welcome to Florida and hope you can get some really good information on Arava

from those that have been helped.

Gentle, tender, Florida angel hugs,

Debs in FL

[Guest guest]

Myra, I hope that on the 11th your physician will come up with a better

way to treat your pain. If not, please seek out someone else. It's a

crime that you've been living with so much pain for so long.

Re: [ ] Re: ARAVA anyone?

>

> Dear Joanne,

> I was dx with R/A just a short time ago. I was first placed on

plaquenil for one month with predinsone. The predinsome cause me more

swelling and more pain. I have had a very active diseas I think...being

in continued pain for this full year. Sept 13th I was given Arava. I

have thus far had no real reaction to the meds and no releif from the

pain. If anything I now have pain in places I did not have before.

When I call the docs office they told me this *could* happen. My next

appointment is October 11. It is becoming harder and harder for me do

do things....I am not sure when I will get any relief from this diseas.

At this point I will accept most anything to get a few moments of peace.

> Myra, Atlanta GA

[Guest guest]

Dear ,

Thank you for your kind thoughts. I am not sure of what to say to my physician

on my next visit. I am not sure if I have given Arava a chance. I am taking

Plaquenil and Arave. My doc did give me lortabs 5 mgs but they seems to be doing

nothing, I do not take them. They provide no relief. I have been on Betra

since June and I am still hurting. My left sholder that had arthro surgery in

July still hurts with not much more range of motion. The pain in my feet/knees

are what is really getting to me now and the fatigue is overwhelming. I am also

having more and more trouble with my hands. I am just not so sure of how much

more I can take. I do work so on the weekends...I rest. I do nothing...there

is no life outside of this disease. It takes everything for me. There is no

one that can help me. I have been on my own for the last 20 years. My only

daughter move to FL before my dx....said all this was just in my head.... What

can I expect? More of the same? Has anyone else had this much progression of the

disease. I almost know when it started kicking my but...I was a

healthy....active 48 year old women....now I am a 51 year old...old person.

When will it get a bit better? How long should I give Arava? I am tired of this

disease...and not really understanding why it does not kill you...you just wish

it would. I do have an appointment with another Rheumatologist Nov 21...that

was first available...had it since sometime is Sept. Anyone that can add

anything to help me I would appreciate the advise. Myra

wrote:Myra, I hope that on the 11th your physician will come up

with a better

way to treat your pain. If not, please seek out someone else. It's a

crime that you've been living with so much pain for so long.

Re: [ ] Re: ARAVA anyone?

>

> Dear Joanne,

> I was dx with R/A just a short time ago. I was first placed on

plaquenil for one month with predinsone. The predinsome cause me more

swelling and more pain. I have had a very active diseas I think...being

in continued pain for this full year. Sept 13th I was given Arava. I

have thus far had no real reaction to the meds and no releif from the

pain. If anything I now have pain in places I did not have before.

When I call the docs office they told me this *could* happen. My next

appointment is October 11. It is becoming harder and harder for me do

do things....I am not sure when I will get any relief from this diseas.

At this point I will accept most anything to get a few moments of peace.

> Myra, Atlanta GA

[Guest guest]

<PRE>hi joanne, i took arava for about a month about a year and a half ago. i

was

very fatigued and dizzy. i had to hang on to the walls to walk. couldn't keep

my balance. i also took enbrel but had a very bad upper respitory infection

when i went back to it. it just didn't give me relief any longer. after that

i tried remicade. i felt wonderful. on my third infusion, i broke out in

hives, we tried it again a few times with benadryl but it still happened. it

then sparked an infectious disease from 25 yrs ago. i have been having

troubles with infections since. i found great relief with prednisone. now it

has raised my blood sugar and started depleting my kidney function. i have

weaned and been off a week. besides yesterday, i was just in so much pain and

fatigue i had to. she has given me samples of neurontin to take. but i am

afraid to put another chemical in my body right now. i have just gotten off

prednisone and i'm on flagyl for this infection. i have a hard time taking

meds because of my ulcer, so that limits my ability to use drugs. plus my

father is also very sensitive to drugs and i think i follow in his footsteps.

kathy in il

[Guest guest]

Hi Myra:

I am so sorry to hear that you are feeling so bad and

have so much pain. You don't say how long you have

been taking the Arava - I have been on Arava now since

January, along with Methotrexate and Bextra. It took

a couple of months for the Arava to begin helping. I

also took Prednisone for a month or so until my doctor

felt that I should be having relief with the Metho and

Arava combo. I also take Bextra. These meds are

helping to control the RA, still have flares and

fatigue, but I seem to be holding pretty steady for

now. I do, however, think that the RA is recently

becoming more aggressive again and I hope that Embrel

will soon be available to me - my doctor thinks I am a

great candidate to be helped by it. Plaquenil was

prescribed when I was first diagnosed and that, with

Motrin, did well for almost 2-1/2 years until the RA

became aggressive again. I know exactly what you mean

when you say you are an " old " 51 year old - I was 45

when diagnosed, am 48 now, and sometimes feel very

old. This disease takes a lot out of us.

Please let your doctor know exactly how you feel and

how RA is affecting your life. You sound so depressed

and I completely understand where you are coming from.

RA is a nasty disease, very frustrating, and very

hard to control sometimes even with all the meds we

have at our disposal. There have been times when I

was in a lot of pain with a flare that I also felt

hopeless and out of control with my life and what RA

has done to it. I was having trouble sleeping,

concentrating, was totally bone tired and had

difficulty dragging myself out of bed. I was in a bad

place emotionally trying to cope with the RA. I

recently began taking Effexor XR for depression and it

has helped quite a bit in helping me to deal with the

RA. I still have flares, sometimes can barely get

from room to room because I am in such pain, but I

don't feel as hopeless as I did before - it does get

better - it just sometimes seems to take forever until

it does. Have you considered an anti-depressant? My

doctor told me, when I finally talked to her about my

feelings of depression, that RA and depression go hand

in hand - she was surprised I had lasted so long

before having problems with it. She says a chronic

disease like RA takes a lot out of a person, there is

no cure and that is very scary to me, we don't know

from day to day how we are going to be doing, we don't

know what the future holds - how bad will it get and

is this as good as it gets. It is terribly

frustrating and difficult to cope with sometimes.

Please think about getting some help for your

depression - I know it's hard to think about adding

yet another medication to the mix - but it did help

me. Just think about it, okay, my friend?

Has your doctor thought about giving you Prednisone

for a while to help you with the pain and give the

Arava and Plaqenil time to kick in? Please let him

know how much pain and hopelessness you are feeling -

he needs to know the real low down on what is going on

with you right now. I hope that you can find the

right medications that can give you some relief - I

wish there was more I could do - but know that we are

always here for you and prayers are being said for you

to feel better soon.

Kathe in CA

--- Myra <tarnishedsilverheart@...> wrote:

>

> Dear ,

> Thank you for your kind thoughts. I am not sure of

> what to say to my physician on my next visit. I am

> not sure if I have given Arava a chance. I am

> taking Plaquenil and Arave. My doc did give me

> lortabs 5 mgs but they seems to be doing nothing, I

> do not take them. They provide no relief. I have

> been on Betra since June and I am still hurting. My

> left sholder that had arthro surgery in July still

> hurts with not much more range of motion. The pain

> in my feet/knees are what is really getting to me

> now and the fatigue is overwhelming. I am also

> having more and more trouble with my hands. I am

> just not so sure of how much more I can take. I do

> work so on the weekends...I rest. I do

> nothing...there is no life outside of this disease.

> It takes everything for me. There is no one that

> can help me. I have been on my own for the last 20

> years. My only daughter move to FL before my

> dx....said all this was just in my head.... What

> can I expect? More of the same? Has anyone else had

> this much progression of the disease. I almost know

> when it started kicking my but...I was a

> healthy....active 48 year old women....now I am a 51

> year old...old person. When will it get a bit

> better? How long should I give Arava? I am tired of

> this disease...and not really understanding why it

> does not kill you...you just wish it would. I do

> have an appointment with another Rheumatologist Nov

> 21...that was first available...had it since

> sometime is Sept. Anyone that can add anything to

> help me I would appreciate the advise. Myra

>

> wrote:Myra, I hope that on the 11th

> your physician will come up with a better

> way to treat your pain. If not, please seek out

> someone else. It's a

> crime that you've been living with so much pain for

> so long.

>

>

>

>

> Re: [ ] Re: ARAVA anyone?

>

>

> >

> > Dear Joanne,

> > I was dx with R/A just a short time ago. I was

> first placed on

> plaquenil for one month with predinsone. The

> predinsome cause me more

> swelling and more pain. I have had a very active

> diseas I think...being

> in continued pain for this full year. Sept 13th I

> was given Arava. I

> have thus far had no real reaction to the meds and

> no releif from the

> pain. If anything I now have pain in places I did

> not have before.

> When I call the docs office they told me this

> *could* happen. My next

> appointment is October 11. It is becoming harder

> and harder for me do

> do things....I am not sure when I will get any

> relief from this diseas.

> At this point I will accept most anything to get a

> few moments of peace.

> > Myra, Atlanta GA

>

>

[Guest guest]

Kathy I can sympathize with allergies to meds.....seems like everything my

Dad is allergic to I have become allergic to and more. I am so careful to

start any new meds cos you never know how you will react.

I went to the eye dr for a yearly check....I still have my lacrimal duct

poking out in my left eye from Feb - Mar when I almost lost my sight....so

now I get to go to the Opthamologist to make sure it isnt clogged or

something...doesnt bother my vision except my lid seems to be swollen there

some days and some days is fine.At first we just thought it was something to

do with the Sojren's but she said it should go back up in it's place and not

be down there.That eye is drier than the other when she checked for fluid.I

went and got my eyes done because both of my parents have had recent changes

....my Mom has glaucoma now and cataracts(took her 2 months to get right

balance of meds adjusted ,and my Dad has temporal arteritis which they caught

the first time and did a biopsy and put him on high doses of Predisone ,

fixed one eye's cataract, then he tried to wean down on Predisone, and

headaches came back...good old temporal arteritis again...so he is back on

high doses of Predisone again....and had other eye's cataracts done.sos for

the first time in 60+ yrs he can see w/o his glasses.....and now he is trying

to taper down his predisone ...he is at 20 mg from 60 a month ago but the

headaches keep happening so he is stuck tween 20-40mg....with temporal

arteritis (people over 50 but mostly over 70 with RA can get this easy)you

have to take it for a yr or more ....to keep from going blind.

Oh my knee is doing great from the supartz shots.....they said to give it a

couple months from last shot and I admit it really hurt for a while there

....but now it is great....not 100% like a normal knee but it works and doesnt

hurt ...I can get down on floor and push up on it,,and take a tub bath and

use it to get in and out ....so I wonder how long thses shots will hold

for.they say as long as 3mon- yr...I am hoping I get the long term.....

As for flares......well, we are getting cooler weather at night and I feel

the difference getting up in the morning. I dont know how people do it in

Florida with 100% humidity..it gets over 25-30% here now and I feel it from

middle of night on.......I think some days my feet are welded flat on my

legs as I walk so stiff and joints are swollen...same thing with hands for a

couple hours in AM.....

Weel, I guess I need to go finish laundry ...May everyone have less Pain days

and nights.....Judy in AZ

[Guest guest]

Joanne,

My most successful DMARD is Enbrel. I¹ve been on Enbrel since shortly after

it was approved.

At times, 2 shots a week isn¹t enough but they are now prescribing 3 shots a

week for patients that need it more often. In the summertime when I swim

and get lots of exercise, I find I can get by with just one shot a week,

sometimes less. Although Enbrel works very well as an anti-inflammatory for

me, I¹ve had new joint involvement since being on it so it has not stopped

the progression as I had hoped. But in the 25+ years, no DMARD has ever

given me such dramatic relief. I can almost feel my joints deflating after

an injection. I was one of the lucky ones and got relief only a few days

after I started taking it. I was taking it with MTX but found no additional

relief and discontinued it.

a

> Hi Friends

>

> Do we have anyone who is either on ARAVA or who has taken it for RA.? I am

> trying to find out amongst our group how effective this medication is for

> those who have taken it. I have taken it for only 2 weeks in the past but had

> to stop due to a rash on both arms and hair loss that lasted 4 mo....

>

> thanks in advance to those who reply

>

> Joanne

>

> PS: I am still gathering any info from members of our group who wish to share

> success or failure stories regarding what medication or treatment is working

> or has worked for them to make their disease considerably better. So far I

> have only heard from 2 people. I think this would be of great interest to all

> thanks

>

>

>

[Guest guest]

Hi Joanne,

I guess I missed your request for what medications we take and what has

worked. I was diagnosed with RA this past January. I experienced

progressively worsening symptoms for about 2 years before I made my way to a

rheumatologist and was finally reassured " it was not all in my head " or that

if I lost some weight I would be " just fine " .

I ate ibuprophen like candy for the first year. Things progressed and got

worse. I saw an orthopedic and started taking vioxx along with Arthritis

Tylenol. It worked pretty well for about 6 months. Then my liver enzymes

started to rise and my gp took me off the vioxx. I started eating Tylenol

like candy and added MSM, and took lortab without much success. I was in

pretty bad shape by the time I saw the rheumatologist. Prednisone was

miraculous for me. 4 hours after my first dose I felt almost normal.

Despite grave misgivings, I also started methotrexate at the same time as

the prednisone. It took the mtx about 3 months to " kick in " , then I slowly

weaned off the prednisone. Although my joints felt really good from the

prednisone, I was started to experience terrible headaches, gained some

weight gain, and had a feeling that my legs were too big for my skin.

I've been stable on mtx with Tylenol and/or Lortab when necessary. I've had

a couple of flares that caused me to resort to taking the Lortab on

occasion. A long flare I was having with my right shoulder mysteriously

vanished after I had a colonoscopy. Go figure. When the shoulder began to

twinge again recently, I visited my orthopedic doc whom I hadn't seen in

several years. He took x-rays, saw no damage so treated me for bursitis/

tendonitis by injecting my shoulder with cortisone. The result was quite

surprising, not only did my right shoulder feel better, so did my left

shoulder and the swelling in my fingers was so reduced I could put my rings

back on. One thing I found interesting: I had always heard having cortisone

injections was *really* painful. And I admit it didn't feel great when the

doc did it. I joked with him that the " cure " felt worse than the disease. On

the other hand, the pain I have lived with over the past 2 1/2 years has

been so intense that I just didn't think the injection was all that bad. I

have been assured by others since the injection that they do hurt like the

devil, it gave me a new perspective and appreciation of the pain level I

have grown accustomed to accepting as " normal " .

I'm struggling like many others here to figure out how to " manage " this

disease, and understand what is happening.

Other than a bone scan which showed inflammation in my feet, ankles, knees,

hips, hands, fingers, wrists, elbows and shoulders, and a C Reactive Protein

that ranges from 13 - 32 (last test was 24), I don't show any other test

abnormalities. (SED rate normal, RA factor negative.) So far, with all the

xrays that have been taken, no joint damage is visible. For the most part I

manage very well, I haven't missed any work other than to go to doctor's

appointments. I have accrued over the past 12 years the maximum amount of

sick leave available to me (over 540 hours) so taking time off for

appointments has not been an issue. My middle finger on my right hand is

currently under attack, and has been for some months, so I guess the

progression has not been stopped. In the scheme of things, and compared to

what many others write, I am in pretty good shape. I still resent that I am

not like I was " before " and wonder what the future holds.

Suzanne

> Hi Friends

>

> Do we have anyone who is either on ARAVA or who has taken it for RA.? I

am

> trying to find out amongst our group how effective this medication is for

> those who have taken it. I have taken it for only 2 weeks in the past but

had

> to stop due to a rash on both arms and hair loss that lasted 4 mo....

>

> thanks in advance to those who reply

>

> Joanne

>

> PS: I am still gathering any info from members of our group who wish to

share

> success or failure stories regarding what medication or treatment is

working

> or has worked for them to make their disease considerably better. So far I

> have only heard from 2 people. I think this would be of great interest to

all

> thanks

>

>

>

[Guest guest]

Robin,

I was on Arava for a while, and it worked very well in controlling the

pain and inflammation. Unfortunately, I had been on methotrexate

previously, and it had caused my white blood cell count to go low. The

Arava just continued the decline. I believe that having 35 radiation

treatments following breast cancer surgery might have played a part.

Different meds help different people, and also affect them in different

ways. I haven't heard of anyone else here who's been on Arava that had

a WBC count problem besides me. Your doctor will monitor you for side

effects.

Sue

On Wednesday, January 3, 2007, at 07:11 PM, robinmk02 wrote:

>

> I have been on Methotrexate for just about five weeks. In speaking

> with my MD, I told him of the headaches I've been having. He said the

> headaches probably will not get better, so he is switching me to Arava.

>

> Has anyone here been on it? If so, what were the results? Any

> information you can give me will be greatly appreciated. Feel free to

> email me privately if you prefer. My email is robinmk02 at aol dot

> com.

[Guest guest]

I used Arava for a short period, no noticeble improvement with the RA. Caused

my liver enzymes to elevate so stopped it.

Sheila

Randall <krandall@...> wrote:

Hi Robin,

Arava workeds very well for my RA. Unfortunately, my liver didn't

tolerate it well at all, and I had to stop taking it after just a

few weeks. But I think it's definitely worth a try!

>

> Hello everyone....

>

> I have been on Methotrexate for just about five weeks. In speaking

> with my MD, I told him of the headaches I've been having. He said

the

> headaches probably will not get better, so he is switching me to

Arava.

>

> Has anyone here been on it? If so, what were the results? Any

> information you can give me will be greatly appreciated. Feel

free to

> email me privately if you prefer. My email is robinmk02 at aol

dot com.

>

> Thanks!

>

> Robin

>

__________________________________________________