Arava

[Guest guest]

In article <95ec4f6e.244c9bf8@...>, CTNATIVE@... writes

>From: CTNATIVE@...

>

>I also have the sed rate and CRP (C-Reactive Protein) checked each month.

>I can tell you with authority that for the last five years that my sed rate

>and CRP are absolutely right on with the amount of inflammation in my body.

>For me anything over 30 is a flare starting. I can always tell the doc ahead

>of time that the number is going to be high or low. He remarked this month

>how right-on I always am on reading my body. The keeping track of these

>figures helps me remember that this disease is " real " and not in my head!

>You all know what I mean I am sure.

But what use is it if your pain/inflammation matches your sed

rate?....my Rheumy doesn't bother with them. You yourself know if

you're flaring, so there is no need to have a blood test tell you that

you're flaring. What difference does it make to your treatment appart

from the extra cost of blood tests?

--

Dave Bentley

[Guest guest]

Hi everyone!

I started using Arava about a month ago with MTX and this is the first week

that I can honestly say, I think it's helping. They reduced my MTX from 25mg

to 20mg and started the Arava at 10mg. I went througha rough couple of

weeks, I had to go back on Prednizone to help get me through the rough spots.

I go back to Stanford week after next, I'll let you know how it goes. They

say that I am the only PSA patient on this formula of medications, maybe

someone else can shed some light on how they're doing, if they are on the

same combination. I'm also taking 400mg of Celebrex and much more. Oh well.

I really appreciate this list. My husband insisted I join and he was right.

I really need the support. As a Christian, I'm struggling with spiritual

issues regarding my condition and why I'm not getting better. My pastor's

wife calls me Job, but I'm no Job. I complain and feel sorry for myself

often. I find that no one really understands the pain and the depression is

terrible. I've always been a doer, an overacheiver to most, but not anymore.

I can hardly get my kids to baseball practice and games. I can't tell you

hard my job has become. I'm a preschool director and I'm having to consider

giving it up. I guess that's one of my problems, I feel like I've given so

much up and it still hasn't helped. Enough of this! I am grateful I am able

to type on this computer and have all of you to keep me posted on this

wretched disease.

Hope you all feel better this week.

Amy

[Guest guest]

,

It took seven full weeks for the Arava to work for me and it was " boom " over

night- just like my experience with Methotrexate.

I just wake up one morning and know the flare has ended. I hope the same

will be true for you soon. The Arava has been especially good for the

psoriasis too. Much better than the Metho had been.

Keep the faith.

[Guest guest]

Dear Amy,

So glad to have you on the list. I too am a Christian. Depression is a real

problem with chronic pain and illness. I myself have taken a strong

antidepressant for over five years. I feel that the pain definitely causes a

chemical imbalance in the brain. Not to mention that all the narcotic pain

relievers are depressants too! I had to give up ever working - and my

volunteer activities have also suffered.

I also know how it is to try and do " mom

duty " when you have small children. My arthritis started to worsen when my

daughter was 1, and my sons were three and five. Now they are 8, 10 and 12

and have baseball practice, tennis lessons, basketball, etc... Luckily they

go to Catholic school, so I don't have to drive for religious education too.

I make a lot of Stouffers meals each month and we eat pizza once a week - you

know how tired we can get at the end of the afternoon?

The laundry is especially difficult because of the heavy lifting and all the

shoulder and elbow work for folding to be done.

/When my hands were so bad I just couldn't fold, so I called the kids, tossed

their clothes in a clean pile and supervised them folding their own all at

the same time right in the family room. That worked pretty well. If only

hubby were trainable like kids!

That is all for now.

E mail me privately any time,

[Guest guest]

Jani: I wish you the very very best!!! Having just started

mtx, I can relate to starting a new drug. I'm sure you'll

be fine. Let us know how things go. We're all here for

you.

Lea

jani wrote:

> Tonight I will begin Arava. Wish me luck.Hugs, Jani

[Guest guest]

Dear Amy,

It is too bad that your doctor increased the Arava while he decreased the

Metho at the same time. The reason my doctor will only change one med at a

time is that then you do not know which med is doing what- see what I mean?

I had a high sed rate of 45 today -- up from 27 two weeks ago. The evening

and early am hours are the worst, as is the morning stiffness and severe pain

in the neck and sacroiliac. I am starting a total dose of 30 mg tomorrow --

up from 20 mg. If this does not work to bring things back to normal within

six weeks, then we plan to try to add in Imuran (it worked for me for quite a

while -- but in the end we could go no higher on the dose and it wasn't

enough). Since the Metho never " held " the PA at bay and generally did poorly

for the skin compared to the Arava, I feel more comfortable with the Imuran

anyway.

My Trans-Esophageal-Echocardoigram (TEEG) did not go well. It was very

uncomfortable and the result showed a small hole between two chambers in the

heart. This is how small emboli can escape up to the brain and give me small

TIA's apparently. I will be going on Coumadin or Heparin shots (my

preference) within the week. Coumadin always gave me a bad skin rash, so I

am hoping that the twice a day fractionated heparin will do the same job.

For pain right now, I use 30 mg of MSContin at bedtime and two doses of the

long acting Tylenol eight hours apart during the daytime hours. So far that

is sufficient and still allows me to drive legally and with confidence.

[Guest guest]

Randi,

What medication are you on?

Amy

[Guest guest]

You never know... for some people it just kicks in from 6-8 weeks....in my case

I tried it for 3 months with no effect at all.

Randi66@... on 06/22/99 10:23:28 AM

Please respond to onelist

Psoriaticarthritisonelist

cc: (bcc: Daehnick/Boulder/IBM)

Subject: [ ] Arava

From: Randi66@...

Hi all,

Its been almost a month, and I feel NO better, Im getting so dissapointed in

the drug. maybe it wont work for me? I called the company and they said it

has NOT been approved for Psoriatic Arthrits. Im at my wits end. For the

last few nights I have had to take an ultram before bed, and I feel so groggy

in the morning.

Randi

---------------------------

[Guest guest]

arava 20 mg, clinirol, 200mg 2x a day, zoloft 50 mg, once a day

[Guest guest]

In a message dated 08/14/1999 8:02:17 PM Eastern Daylight Time,

Randi66@... writes:

<< and my joints are no longer black and blueish. >>

Randi...this is the first time I have heard anyone else say they had black

and bluish joints. I thought it was just me...I also get little relief from

the MTX now and will ask my doctor tomorrow about the Arava..thanks for

telling us about the help it provided for you.

Annette

[Guest guest]

> this is the first time I have heard anyone else say they had black

> and bluish joints. I thought it was just me.

Annette,

I've only just recently experienced this too. Particularly in the

hands/knuckles.

Vicki

[Guest guest]

randy,

what is arava medication

[Guest guest]

Hi my name is Shell,

Arava is a new anti-inflamatory drug which is gentler on your stomach. Its

made by a company called Merck. My brother works for them so if you need

any further information let me know and I will see wot I can do.

I live in the UK, and I enquired to the specialist about this drug and she

got majorly stroppy about it, as I knew more than her. Anyway she dismissed

it and said there was no point as they were only starting out and she didn't

trust it. All a load of bull if you ask me but wot the heck, no longer

seeing her, stupid woman.

How long have you PA?

Hope to hear from you soon.

Shell

>From: PShaw86345@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Arava

>Date: Wed, 18 Aug 1999 22:01:18 EDT

>

>From: PShaw86345@...

>

>randy,

>what is arava medication

>

>---------------------------

[Guest guest]

How did you get on the patient assistance program?

Delaine

Joanne Jacquette wrote:

> From: jmj@... (Joanne Jacquette)

>

> I went on Arava in June after 18 months on antibiotic therapy. The product

> worked absolutely great however, I developed a rash and was forced to stop

> it and take another medication to clean Arava from my system. It is so

> potent you cannot have any type of immunization for 2 yrs after you stop

> this drug. Arava costs approximately $8.00 a pill and you take a starting

> dose of 100mg for 3 days (about $113.00) and then 10 or 20 mg daily. I

> qualified for their patient assistance program and recieved approximately

> $700.00 worth of Arava. They also refunded the $113.00 for the startup dose

> since I couldn't take the product.

>

> Hope this helps

> Joanne

>

> ---------------------------

[Guest guest]

Randi,

I take 30mg of Arava daily and 20mg of MTX weekly.

Amy

[Guest guest]

Hi Randi,

I just started Arava 5 days ago. I began with a 50 mg loading dose

for 3 days and am now on 10 mg per day. I don't know if it's

helping my joints ( I got a steroid shot 9 days ago) but it sure is

making me terribly sleepy. I take other medication so I don't know

if this is due to interaction with my other meds. How long have you

been on Arava and what dose? I would be interested in hearing

anyone else's experience with Arava. Take care. Z.

[Guest guest]

Does anyone have any feedback on Arava/ What is it exactly?

[Guest guest]

My own experience with Arava is that for the past six months I have been free

of psoriasis completely! My doc says many people have this happy result.

Sorry for those who don't : <

[Guest guest]

What type of drug is arava? Do you have a bad case of

psoraisis on your skin? I'm looking for other

alternatives to mtx. I'm not real thrilled with

putting this drug into my body.

--- CTNATIVE@... wrote:

> My own experience with Arava is that for the past

> six months I have been free

> of psoriasis completely! My doc says many people

> have this happy result.

> Sorry for those who don't : <

>

>

>

>

------------------------------------------------------------------------

> Please visit our new web page at:

> http://www.wpunj.edu/icip/pa

>

<HR>

<html>

>

[Guest guest]

Hi Judy - I " m interested in any feedback about Arava too as Dr Chiu

suggested I try it when I saw him on Monday.

The doxy is helping me but I need something extra for a while as I'm

having a neck fusion done in about 2 weeks and may have to stop

antiinflamatories for a spell.

I have been off methotrexate since Nov 99 after 8 years.

Barbara - RA 23 years Doxycycline 100 mwf 22 mths

jlynch200@... wrote:

> Looking for anyone who is taking Arava. My Rheumatologist is

> suggesting that I start this new drug. Had 12 years on Metho and

> stopped helping. Have been taking Minocycline for 3 years.

>

> Thanks

> Judy in SC

> Ra 42 yrs., Fibrom 17 yrs.

>

> --------------------------

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[Guest guest]

Judy , Thanks for responding. I think the MTX is washing out and my body is

adjusting to new meds ( ARava and Minocin ) I have upped the dose of Arava

to 20mgs. 10 mgs seems to not be enough for now anyway until the Minocin

kicks in ( Soon hopefully ) I also felt tired and Toxic on the MTX for 6

years. Glad to get off but hope the Arava can do as good with the pain and

especially the MYositis. I will be happy to take any more advice anyone has

about this. Greatful for your support. Feel like a hard time is coming. Patti

[Guest guest]

Dear Judy,

Did the minocin work great for awhile and then stop working, or was

there another scenario? I like to keep up with how the AP works over

time. I guess it didn't work that well if you are taking Arava now.

love,

Gloria

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[Guest guest]

Randy,

Arava is a new drug approved by the FDA for RA. My RD states that there are

research articles supporting it's use in PA. However, it is not FDA

approved for PA. Since it's not approved, some insurances won't cover it

without an RA diagnosis. I was lucky and my insurance does cover it. In

Missouri, a month's worth costs $283.00 out of pocket if you're insurance

doesn't cover any of it. So far it has helped my symptoms much more that

the MTX did over several months and I've only been on the Arava for 4 weeks.

Rae

Re: [ ] Echinacea

> ARAVA. What is arava? I've not heard of it. I want to get

> away from the MTX and hopefully find something less destructive

> to the liver and other organs. What does arava do for P.A.? How

> is it taken? Are there any side affects? I would appreciate any

> info on this. Thanks, Randy in Va.

>

> Larry and Rae Farrell wrote:

>

> > ,

> > They had to take me off my MTX. I was on 17.5 mg per week and started

> > running temps and my eardrum ruptured. After that they couldn't get me

off

> > the antibiotics. An infectious disease specialist wanted to put in a

> > central line and give me IV antibiotics for 6-8 weeks.. I had a CAT

scan

> > and they found an abcess in my left sinus. They stopped the MTX, I had

the

> > abcess removed, and after all was healed they started me on Arava. So

far

> > so good, no illness and no temp

>

>

>

> Please visit our new web page at:

> http://www.wpunj.edu/icip/pa

>

> This past year had moderated a chat on arthritis at

www.about.com on Thursday evenings and hopes to start up doing so again

soon- we will keep you posted! Meanwhile, if anyone would like to start a

weekly chat on egroups, please contact or . Thanks

>

>

>

[Guest guest]

Thanks for the info. I'll ask my doctor about it, especially if

it doesn't have any known side affects or cause liver damage

like the MTX I'm on. Randy

Larry and Rae Farrell wrote:

> Randy,

> Arava is a new drug approved by the FDA for RA. My RD states that there are

> research articles supporting it's use in PA. However, it is not FDA

> approved for PA. Since it's not approved, some insurances won't cover it

> without an RA diagnosis. I was lucky and my insurance does cover it. In

> Missouri, a month's worth costs $283.00 out of pocket if you're insurance

> doesn't cover any of it. So far it has helped my symptoms much more that

> the MTX did over several months and I've only been on the Arava for 4 weeks.

> Rae

> Re: [ ] Echinacea

>

> > ARAVA. What is arava? I've not heard of it. I want to get

> > away from the MTX and hopefully find something less destructive

> > to the liver and other organs. What does arava do for P.A.? How

> > is it taken? Are there any side affects? I would appreciate any

> > info on this. Thanks, Randy in Va.

> >

> > Larry and Rae Farrell wrote:

> >

> > > ,

> > > They had to take me off my MTX. I was on 17.5 mg per week and started

> > > running temps and my eardrum ruptured. After that they couldn't get me

> off

> > > the antibiotics. An infectious disease specialist wanted to put in a

> > > central line and give me IV antibiotics for 6-8 weeks.. I had a CAT

> scan

> > > and they found an abcess in my left sinus. They stopped the MTX, I had

> the

> > > abcess removed, and after all was healed they started me on Arava. So

> far

> > > so good, no illness and no temp

> >

> >

> >

> > Please visit our new web page at:

> > http://www.wpunj.edu/icip/pa

> >

> > This past year had moderated a chat on arthritis at

> www.about.com on Thursday evenings and hopes to start up doing so again

> soon- we will keep you posted! Meanwhile, if anyone would like to start a

> weekly chat on egroups, please contact or . Thanks

> >

> >

> >

>

>

> Please visit our new web page at:

> http://www.wpunj.edu/icip/pa

>

> This past year had moderated a chat on arthritis at

www.about.com on Thursday evenings and hopes to start up doing so again soon- we

will keep you posted! Meanwhile, if anyone would like to start a weekly chat on

egroups, please contact or . Thanks

[Guest guest]

I've been on Arava since November and I am getting wonderful results!

Loose bowels have been a bit of a problem but worth it for the

decrease in fatigue & pain. I debated a long time because the drug

is so new and no one knows the long term risks. In the end I

determined that quality of life now was more of a concern than the

unknown of the future. All we have for sure is today.

I was on 20 mg of MTX by injection, Plaquinil, and a narcotic patch

24/7. Now I am on the lower dose of Arava (10 mg), only 5 mg

orally of MTX, and narcotics as needed (usually fewer than 2 pills a

day). AND I have returned to college teaching 2 days per week. This

is a major, major improvement in my life.

With Arava I have regular blood tests to check the liver, kidneys and

check for anemia. The safety of Arava looks to be very good. I

believe it is a treatment worth considering.

LaRita

Thought from LaRita

" Learn as if you were going to live forever. Live as if you

were going to die tomorrow. "

--Anon.