arava

[Guest guest]

Dave, I haven't seen anything on TV about Arava. I wish I did. I am still

working with all the side effects from it. I have now gone into a lung

infection. It just hasn't effected my only kidney, thank GOD! I usually

have trouble with everything effecting it, but I guess it's pretty healthy

right now. Let me know more about the ads about Arava you see, I'm

interested. My Doc said he never saw anyone in 1000 patients who had so much

reaction from the drug. But he said I wasn't on it long enough to have to

have a long term cleansing, just the charcoal stuff. But the side effects

also gave me a big ReA flare, that I am already on prednizone and azulfadine

for, so up goes the prednizone dose and also low dose of Methotrexate. I

know what you mean about feeling worse after treatment. I hope to get this

mess cleaned up, then not add anything for hopefully 6 months to get my flare

in control. I have a permanent flare, don't go into remission anymore for

the last 5 years, just get really bad or kind of bad. I just have to adjust

my routine. I am mostly homebound, but get out a couple days a week. Can't

stand cabin fever. Even if my outing is just driving around looking at the

beautiful Oregon landscape for an hour a week. I do have a patio with a

potted garden that I love to work in, but it's been too hot lately, and

smokey Well, thanks for the input and hope you feel better. EFD

[Guest guest]

Hi EFD

The ads aired on a couple of Spokane stations. One on Fox 23. It was a

pitch for a group of lawyers who specialize in actionable cases involving

the doctors and drug companies. I will keep an eye out for it. It does

give an 800 number.

+Dave

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[Guest guest]

> the doctors and drug companies. I will keep an eye out for it. It does

> give an 800 number.

And the number is 1-800-555-8123. Saw the ad this afternoon during Texas

Justice it was for several different drugs but the last name on the list was

Arava. OK, I happen to enjoy shows like that, Judge Judy, People's court,

etc.

+Dave

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[Guest guest]

Just my two cents worth here. I was really scared when the doc. said my

infections were getting too serious and stopped both my MTX and my 6 wk

Remicade infusions...Never having been off of this coctail (I was on Enbrel

and MTX before this) I thought I was doomed. Well, my steroid dose has

increase a little, but I think the Arava is really doing okay on its own. I

had been taking it the entire time I was on the above drugs, but didn't

really realize how much it did for me. I don't know how I will do this fall

(that is my worst time o' year), but it has helped me to take time off the

heavy biologic agents to try to heal from all the staph and other infections.

Still have to have regular liver panels, but hey, at least I'm not puking

from MTX every sunday. Take care and always...

STAY HEALTHY

[Guest guest]

Just my two cents worth here. I was really scared when the doc. said my

infections were getting too serious and stopped both my MTX and my 6 wk

Remicade infusions...Never having been off of this coctail (I was on Enbrel

and MTX before this) I thought I was doomed. Well, my steroid dose has

increase a little, but I think the Arava is really doing okay on its own. I

had been taking it the entire time I was on the above drugs, but didn't

really realize how much it did for me. I don't know how I will do this fall

(that is my worst time o' year), but it has helped me to take time off the

heavy biologic agents to try to heal from all the staph and other infections.

Still have to have regular liver panels, but hey, at least I'm not puking

from MTX every sunday. Take care and always...

STAY HEALTHY

[Guest guest]

Thanks for the phone # Dave. I owe you one. I'll be calling it tomorrow. I

keep asking my Docs to look into why it is still giving me reactions, and

they said it should be out of your system, that's it. I don't have as many

problems, but the pain in my left lung is still there. So, I will get to

calling those people to find out what it's all about. Thanks again. EFD

[Guest guest]

well im in arava now , never heard of it till my doctor told me about it, it

seems to be working a bit, i can eat normalily now i still get wrist and

foot pain though but i feel about 40% better

[Guest guest]

I had been taking Arava along with my enbrel and mtx, and together they had been

helping. Now, with kineret, I am off arava, cutting down my prednisone and off

my NSAID.

It is so good we have choices!

[Guest guest]

-From: kisada1@...

well im in arava now , never heard of it till my doctor told me about it, it

seems to be working a bit, i can eat normalily now i still get wrist and

foot pain though but i feel about 40% better

***************************************************************

so glad to hear that the drug Arava has been working quite well for you.

There are so many times that we start a new medication and take it for

months before we realize that it just isn't doing much at all and then we

must start the process again of finding another med that will be the wonder

drug. So I am happy for you that Arava has worked for you even if it is

40%. I know when I started this drug, I noticed a big difference and for the

first time was able to actually *notice* a difference. But then I got

extremely sick (double pneumonia and septic shock) and had to be taken off

this drug but once I had recouperated and was back to as normal as I have

ever been, the Rheumy started me back on the Arava but it just hasn't had

the same effect it had the first time.

Take care,

Marilyn

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hello,

I am so glad the Arava is helping. I hope it will continue to help you.

Thanks for sharing this wonderful news with us. The Arava was one of the

best meds I had been on for awhile. Thank Goodness for these newer Meds. I

really think they are better then some of the older Meds. Just my opinion.

Keep us posted.

Love,

jatw@...

[Guest guest]

Arava stopped my daily fever spikes imm. Great stuff w no noticabe side

effects. REon

Re: Arava

> Hello,

>

> I am so glad the Arava is helping. I hope it will continue to help you.

> Thanks for sharing this wonderful news with us. The Arava was one of the

> best meds I had been on for awhile. Thank Goodness for these newer Meds.

I

> really think they are better then some of the older Meds. Just my

opinion.

> Keep us posted.

>

> Love,

>

>

> jatw@...

>

>

>

>

>

[Guest guest]

,too struggle w/ pneumonia and I can't quiter connect the dots as to the

relationship between inflamation and bacterial or viral infection. I have

some permanent lung camage left over from pneu. Now it is hard to

distinguish between pneu and a flare. Ron Carlson

Re: Arava

>

>

>

> -From: kisada1@...

>

> well im in arava now , never heard of it till my doctor told me about it,

it

> seems to be working a bit, i can eat normalily now i still get wrist and

> foot pain though but i feel about 40% better

>

> ***************************************************************

>

> so glad to hear that the drug Arava has been working quite well for you.

> There are so many times that we start a new medication and take it for

> months before we realize that it just isn't doing much at all and then we

> must start the process again of finding another med that will be the

wonder

> drug. So I am happy for you that Arava has worked for you even if it is

> 40%. I know when I started this drug, I noticed a big difference and for

the

> first time was able to actually *notice* a difference. But then I got

> extremely sick (double pneumonia and septic shock) and had to be taken off

> this drug but once I had recouperated and was back to as normal as I have

> ever been, the Rheumy started me back on the Arava but it just hasn't had

> the same effect it had the first time.

>

> Take care,

>

> Marilyn

>

> _________________________________________________________________

> Send and receive Hotmail on your mobile device: http://mobile.msn.com

>

>

>

>

[Guest guest]

Hi Darlene -

I was on mtx and arava (no plaquenil) for quite some time and found the combo

really very helpful. I was only sick during the 'loading dose' of the arava.

Hope that is your experience too.

Marcia

[Guest guest]

Dear Darlene,

I haven't taken this exact combo of meds but I have at one time or another

been on all of them. I have tried the Arava and I didn't become sick when I

first started taking it. It was working quite well for me however I ended

up having to go off of it because of side effects. I hope this med combo

will put you in a remission. Let us know what happens.

Love,

jatw@...

[Guest guest]

Hi Caroline,

I'm so pleased that you will be receiving Arava for free for a few months.

In my early years of not knowing which medications worked for me, both my

Rheumatologists wanted me to go on Arava but I was not willing. I didn't

like the fact that if I wanted to stop it, it would be in my system for quite

a while (I think it was Arava but it could be another drug) and I wasn't

happy with the possible hair loss. They said that many of their patients

were doing quite well on it but I finally chose Enbrel. You'll have to let

us know how it works for you. That other new drug, Humira, and I can't

remember who printed the article about it, sounds very promising and I wonder

if any of us will try it. Its attributes sound similar to Remicade, Enbrel

and Kineret but I like the part where it's injectable only every other week.

)

Like you say.......the squeaky wheel gets the grease and just getting to know

you through this organization, I can tell you are a person with whom to be

reckoned. I haven't seen you on line lately but now I know from your recent

postings that you have been ill. This good news should give you a lift......

)

I do wish you the best of luck with Arava and hope it does wonders for you.

Do you know when they will send it to you or does it go through your doctor

first?

xxoo

Carmen

[Guest guest]

Hi Caroline,

I know what you mean about the bed making fatigue. Same with me. When I'm

finished, I'm puffing like crazy. I decided to try and do a little dusting

(out here in the desert you can dust twice a day) and I got as far as the

computer room and had to sit down on the chair to take a breather. Might as

well see what's going on in my e-mail, yes????? It takes me a good half hour

to get the strength back to continue any housework.

What do you think causes our fatigue? The illness or the medications? Whew!

It tires me out even trying to figure that out!

Reading your letter, it sounds like you've been on Arava before, correct?

Therefore, you know it will help. Lucky you! I've been off my Enbrel for a

week now since I had to wait to reorder until my month's supply was up and so

far I haven't noticed much difference in my body or joints. I hope I never

make the mistake of putting it into the freezer again. I don't see why it

has to be kept in the ice box anyway. Do Diabetics keep their insulin in the

ice box?

Well, go get your Arava and keep us alerted to your progress with it. I hope

it puts you back on your feet for longer times and gives you less pain.

xxoo

Carmen

[Guest guest]

Dear Caroline.

I am sharing your blessing about getting the Arava, because I'm

feeling " lots of happy smiles, and good days ahead for you. "

It's about time you will hopefully be able to " smack the dragon

a good one! "

Love & best wished with the Arava!

~~tricia~~

*****************************************************************

Hi All!

Good news here! My doctor called me tonight to let me know the manufacturer

approved my request for free medication and sent me 3 months worth of Arava.

YES!!!

.. I am so grateful. This is the only stuff that has worked for me so far and

it is $325.00 a month. With no insurance and huge monthly medical costs

already, this was indeed a heaven sent blessing.

Smiles, Caroline

..

[Guest guest]

Cara, I am so happy for you and indeed this news is worthy of many

happy, happy days! I know it took a bit of work and I admire that

you found the way. Much happiness for you. Love, Melt

>

> Hi All!

>

> Good news here! My doctor called me tonight to let me know the

manufacturer approved my request for free medication and sent me 3

months worth of Arava.

[Guest guest]

Hello,

I'm on arava 20mg. and have been since last year is on vioxx and did you find or notice this with the med it made your hair fall out?? it can do that a side effect and mine was coming out in clumps,,,,that really was not good but oh well and the diahrria I know I didn't spell that right but ya knwo what I mean.

Bye,

Teena,(poly)13

[Guest guest]

>

>

" One that I don't see mentioned very much is Arava. "

I have been on Arava for several years and have very good luck with it.

I take 10 mg/day. Near the beginning, my doctor tried to bump me up to

20 mg/day and I had some raised liver levels. But once I was back on 10

mg, I had no problems. I had to be off of it for 5 months (along with

methotrexate for 9 months and Vioxx for 10 months, I'm now on Mobic) for

spinal fusion surgery in Jan. 2004 and I could really tell a great

difference when I could take it again. I made for a very long year but

I have had a remarkable success from the surgery and didn't flare too

badly so we feel extremely blessed.

Now I am getting off the Oxycontin that I had been on for a couple

years. I very slowly made it down to 10 mg/day and my last dose of that

was Jan 18. The first week wasn't so bad but now I'm having lots more

pain (couldn't be because its Feb in Michigan, LOL!), nausea, and

dizziness. My doctor says its withdrawal and can go on for a while.

Has anyone done this and how long does it last? I'm ready to have it

over with. It reminds me of being pregnant....not the most pleasant

time in my life;-(

(but the kids were worth it!)

Meg

I

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[Guest guest]

I'd love to be inMI in Feb. I have been very disappointed that I have to run

up there tomorrow and back on Tuesday. I don't seem to hurt as much from the

cold as the humid strangling heat of GA summers. I guess we are all

different.

It's good to know that Arava is helping you as well as my friend on the

other list. I hope one day to be able to find another rheumy and try some

new things out. I am very thankful that my pain is mostly controlled ( we

all know it never goes away once it sets in) but I do have concerns that

things might be deteriorating at a gallop underneath the pain meds. I guess

I'll find out when the legal mess is settled and I can deal with other

things again.

Thank you for your information.

GA

[Guest guest]

This news is old but I think germaine to the discussion of these drugs.

This article is from

http://www.medbroadcast.com/health_news_details.asp?news_id=877 & news_channel_id=\

1001

For Canadian members mediabroadcast.com is a good resource to our Canadian drug

situation.

U.S. government debates risks of four powerful arthritis drugs

Mar. 05, 2003

Provided by: Canadian Press

Written by: LAURAN NEERGAARD

WASHINGTON (AP) - Increasing reports of major side-effects - cancer and liver

failure - are spurring the U.S. government to reassess the safety of rheumatoid

arthritis drugs that gave patients unprecedented hope when they began hitting

the market four years ago.

" These drugs have shown tremendous benefit, but they ... all have pros and

cons, " said Dr. Weiss of the Food and Drug Administration.

Thousands of rheumatoid arthritis sufferers try one of the four drugs each year.

On Tuesday, the FDA's scientific advisers began two days of debate over how big

a risk each medication poses and whether stronger warnings or restrictions are

needed.

The consumer advocacy group Public Citizen is pushing for one of the medicines,

Arava, to be banned. Reaction within FDA is mixed. An agency analysis posted on

the FDA's Web site Tuesday recommends a ban - citing 54 U.S. cases of liver

failure or damage and eight deaths linked to the drug.

" People should not use this, " said Public Citizen's Dr. Sidney Wolfe, who

contends Arava is far riskier than an equally effective, older alternative.

Higher-ranking FDA officials will tell agency advisers Wednesday that they

disagree, citing additional analyses that argue there's no proof Arava is more

dangerous than competing treatments.

" There are cases of liver injury that are possibly or probably related to use of

Arava, but we also think it continues to have a place, " said FDA drug chief Dr.

. He said the FDA might find, however, that more safety restrictions

were needed.

The FDA is also struggling to determine if three other medicines - Enbrel,

Remicade and Humira - are linked to 170 cases of lymphoma, a hard-to-treat

immune system cancer, reported since 1998.

Manufacturers argue patients already are adequately warned about possible

side-effects, and there's no proof the drugs are to blame.

" Causality is not easy to determine, " said Dr. Francois Nader of Aventis

Pharmaceuticals, Arava's maker. Meanwhile, " the physicians need choices, and the

patients need choices. "

Rheumatoid arthritis, which affects mostly women, is not the wear-and-tear joint

damage that plagues the elderly. Instead, the immune system goes awry and

attacks patients' own cartilage, causing pain and swelling and eventually

destroying the joint. It typically strikes between ages 25 and 50, and within 10

years about half of patients are too disabled to work.

Standard treatment is a cancer drug called methotrexate. For years, few options

existed for patients who couldn't tolerate its side-effects, including liver

damage.

In 1998, new-generation treatments started selling. First came Arava, a chemical

that blocks the overproduction of immune cells that inflame joints, similar to

how methotrexate works.

Then came Enbrel and Remicade, biologically engineered drugs that sop up a

different inflammation-causing protein, tumour necrosis factor or TNF. A third

TNF inhibitor, Humira, won FDA approval last December.

From the start, FDA warned of serious risks. It urged doctors to check Arava

patients regularly for liver damage, and stressed use of birth control because

Arava could cause birth defects. All three TNF inhibitors carry warnings that

they suppress the immune system enough to cause severe, even deadly, infections

and theoretically could increase the risk of cancer.

Now, after four years of sales, the FDA has reports of 170 cases of lymphoma

among users of the three TNF inhibitors.

It's hard to prove if the drugs play any role, Weiss cautioned. Rheumatoid

arthritis itself increases lymphoma risk - RA patients get that cancer at two-

to threefold higher rates than the general population. Plus, only 29 of the

cases occurred during formal studies that allow full investigation.

" You can make a case that the incidence of lymphomas is in the range you would

expect to see in rheumatoid arthritis, " said Tom Schaible of Centocor Inc.,

Remicade's maker.

Dr. Klippel of the Arthritis Foundation hopes the FDA meeting will help

doctors and patients better compare each drug's different risks before choosing

one. " These remain very important drugs, " he said.

[Guest guest]

Hi :

Such a love hate thing with these meds. They do (well sometimes) their job,

but at what risk?????? Did you stop taking it?

Take care.

Patty

[Guest guest]

That is a little scarey. My hands and feet are constantly falling asleep and

always are tingling..

snooksmama@... wrote:

I've had some testing for this (apparently peripheral neuropathy). I'm

also on Arava...hmmmm

Arava Linked To Nerve Problem

According to a report in the journal, Clinical Pharmacology and

Therapeutics, some patients who take

Arava develop peripheral neuropathy (a nerve problem involving numbness,

tingling, and pain in the hands or feet). 80 cases of peripheral

neuropathy

associated with use of Arava have been reviewed in this study. Patients

who

stopped Arava use within 30 days of symptom onset were more likely to

have improvement of symptoms or complete recovery than were patients

who continued to use the drug for longer periods of time. Interestingly,

peripheral neuropathy was not reported by any of the 816 Arava patients

in clinical trials which supported the drug's FDA approval.

" Have no fear for what tomorrow may bring. The same loving God who cares

for you today will take care of you tomorrow and every day. God will

either shield you from suffering or give you unfailing strength to bear

it. Be at peace, then, and put aside all anxious thoughts and

imaginations. "

-St Francis DeSales

[Guest guest]

;

I realized you were on Arava and decided to post this.

I've had tingling/numbness in my feet and for over a year now! I've been

on Arava for about 2 years. I've had nerve conduction studies and emg and

they thought it was peripheral neuropathy versus tarsal tunnel syndrome

(a neurologist).I " m going to go off my Arava (I'll still have Enbrel and

nsaids) and see if it improves.

Sorry to hear that you're going through the same thing, apparently...

and Rob 16 Spondy

On Wed, 18 Jan 2006 16:10:01 -0800 (PST) Salvucci

<lisa_salvucci@...> writes:

That is a little scarey. My hands and feet are constantly falling asleep

and always are tingling..

snooksmama@... wrote:

I've had some testing for this (apparently peripheral neuropathy). I'm

also on Arava...hmmmm

Arava Linked To Nerve Problem

According to a report in the journal, Clinical Pharmacology and

Therapeutics, some patients who take

Arava develop peripheral neuropathy (a nerve problem involving numbness,

tingling, and pain in the hands or feet). 80 cases of peripheral

neuropathy

associated with use of Arava have been reviewed in this study. Patients

who

stopped Arava use within 30 days of symptom onset were more likely to

have improvement of symptoms or complete recovery than were patients

who continued to use the drug for longer periods of time. Interestingly,

peripheral neuropathy was not reported by any of the 816 Arava patients

in clinical trials which supported the drug's FDA approval.

" Have no fear for what tomorrow may bring. The same loving God who cares

for you today will take care of you tomorrow and every day. God will

either shield you from suffering or give you unfailing strength to bear

it. Be at peace, then, and put aside all anxious thoughts and

imaginations. "

-St Francis DeSales