Arava

[Guest guest]

Marti, I don't know if the Arava or the combination of Arava/Enbrel is helping

but my p is minimal and has been the entire time I have been on Arava. The only

down side to Arava that I found is the hair loss but it grows back so the effect

is temporary. It doesn't cause the brain fog or intestinal/stomach upset that

mtx did for me. I quit taking it once before I started Enbrel and I could

definitely tell that it was helping both p and pa and I hope I don't have to

quit taking it for a long time. It's worth a try if you don't mind losing some

hair. Later, Cheri

snowbound22003 <mlw402@...> wrote:

Hi Everyone,

speaking of arava, has anyone noticed it help their p as well as pa?

I am thinking of adding it to enbrel. My p is also bad at this time.

thanks

Marti

[Guest guest]

-

Hi Marti,

I've been on Arava for about 6 months now and I have to admit that

my P has settled down quite a bit. I'm not sure if it is all due to

the Arava or new topical meds my dermatologist gave me. My P was

never overwhelming though.

More importantly, I do feel that the Arava has really helped my PA.

When I was put on Arava I was also on Bextra with really sore toe

joints in both feet and a sore left hip. I had a real hard time

walking. Over the last few weeks I've decided that I feel good

enough to stop taking the Bextra for a while and just see what

happens. So far so good - a couple of new pains, but nothing the

Arava isn't handling. I might be setting myself up as we all know

this disease has no set pattern and my body might just be playing

tricks on me!

The only side effect that I have noticed from Arava is the hair

loss. I blame it on the Arava, my wife says I'm just getting old.

I like my story better!

Dave

-- In , " snowbound22003 "

<mlw402@a...> wrote:

>

>

> Hi Everyone,

>

> speaking of arava, has anyone noticed it help their p as well as

pa?

> I am thinking of adding it to enbrel. My p is also bad at this

time.

>

> thanks

>

> Marti

[Guest guest]

---

Hi Marti,

I've had P on my scalp since I was 12 years old and for the first

time it is completely gone-I'm on Enbrel and Arava-so I'm not sure

which cleared it up. The bad thing is my PA is still real bad in my

joints-my knees and ankles are the ones to start hurting this past

week including my fingers, wrists, etc.

God Bless, Sue.

In , " snowbound22003 "

<mlw402@a...> wrote:

>

>

> Hi Everyone,

>

> speaking of arava, has anyone noticed it help their p as well as

pa?

> I am thinking of adding it to enbrel. My p is also bad at this time.

>

> thanks

>

> Marti

[Guest guest]

Dear Micky, Thank you so much for finding all this data for me and sending

it my way. it was extremely thoughtful of you and you have some great

resources. I was always curious where Arava stood in the list of

medications out there for PA. Unfortunately, I couldn't handle MTX, which

is seems to be the one they compare it to the most. So far on the side

effects, I've been really lucky. I've had some slight nausea from time to

time, but nothing horrible and that I can't handle. I've also decided it

makes sleeping more difficult, but then I have that problem anyway. I'm

just thrilled that I've found one medication I can take without any

problems...knock on wood.

Thanks again and I hope this finds you with a break from the pain and having

a good day. Love, Fran

" Thanks for the info and if you know anything else on Arava please let me

know.

Take care, Fran "

Hi Fran,

Here are some trial results you may not have seen,

It looks like Arava is comparable to MTX. Although when I looked through

some of the literature there seemed to be a higher risk of side effects

with

Arava than with MTX. I have sent you a PDF document by E mail of what

they

tell the rheumy to do when prescribing Arava, you might find it to be of

interest.

This one is from the FDA

Leflunomide 20mg daily, in studies up to 12 months, significantly improved

RA clinical efficacy measures (tender and swollen joint count, patient and

physician global assessments) and reduced radiographic disease progression

compared with placebo and demonstrated comparable improvements to

sulfasalazine (2g/day) and methotrexate (7.5-15mg/week). American College

of

Rheumatology (ACR) 20% response was achieved in 52-55% of patients

receiving

leflunomide, which was similar to treatment with sulfasalazine (56%) or

methotrexate (46%) and significantly greater than with placebo (26-29%).

In a larger study (poster presentation), a greater number of patients

treated with methotrexate (65%) achieved ACR20% response, compared to

patients treated with leflunomide (51%,), but equivalent effects for

retardation of disease progression were seen over 12 months.

This one is from the NHS

Versus other disease modifying antirheumatic drugs

We found three RCTs One RCT (266 people) found no significant difference

for

leflunomide versus sulfasalazine in the proportion of people achieving

ACR20

criteria at 24 weeks (71/133 [55%] for leflunomide v 74/133 [56%] for

sulfasalazine). A second RCT (483 people) compared methotrexate versus

leflunomide versus placebo. It found no significant difference between

methotrexate and Leflunomide at 1 year (ACR > 20%: 52% with leflunomide v

46% with methotrexate; P and CI not provided) or at 2 years. The third RCT

(999 people) comparing leflunomide versus methotrexate found that at 1

year,

leflunomide was significantly less effective than methotrexate in reducing

the numbers of tender joints (reduction 9.7 with methotrexate v 8.3 with

leflunomide), swollen joints (reduction 9.0 with methotrexate v 6.8 with

leflunomide) and improving patient and physician global assessments. At 2

years, radiological disease progression was significantly less with

methotrexate, but there was no significant difference in tender joint

count

and patient global assessment.

This is from a Cochrane review

Main results: Six trials were included in this review. Using the ACR20

improvement criteria, there was an absolute difference in improvement of

28%

(95% confidence interval: 21 - 35%) favouring leflunomide (232 out of 413

leflunomide treated patients compared to 89 out of 311 placebo patients

met

the criteria). There was no difference in ACR20 response rate between the

patients treated with leflunomide and SSZ or MTX at 6 and 12 months. Other

clinical outcomes were improved significantly in the leflunomide group

compared to placebo but not different from SSZ or MTX. Withdrawals due to

adverse events with leflunomide were 10% greater than placebo (70 out of

416

compared to 18 out of 311 respectively). Important adverse events included

gastrointestinal symptoms, elevated liver function tests, alopecia, and

infections. Overall adverse events and withdrawals in the leflunomide

group

were not significantly different from SSZ or MTX.

Reviewers' conclusions: Leflunomide appears to improve all clinical

outcomes

and delay radiologic progression at both 6 and 12 months of treatment

compared to placebo. Its efficacy and adverse events at 2 years of

treatment

are comparable to SSZ and MTX. Long-term efficacy and toxicity remains to

be

established.

This is from a Horizon Scanning Review from Birmingham University

A placebo-controlled, double-blind trial randomised 190 patients with

active

psoriatic arthritis

and psoriasis to leflunomide loading doses and then 20 mg/day or placebo

for

24 weeks.6 The

primary outcome at 6 months was the PsARC (Psoriatic Arthritis treatment

Response

Criteria). This is a composite measure consisting of patient's and

physician's global

assessment of PsA activity and tender and swollen joint scores. A response

according to the

PsARC requires improvement in 2 of these 4 parameters, with at least 1

being

a joint score,

and worsening in none. The PsARC response was 58.9% in the leflunomide

group

and 29.7% in the placebo group. Other

outcomes included the modified American College of Rheumatology

improvement

criteria

(ACR20) (36.3% response versus 20% response); the functional Disability

index of

the Health Assessment Questionnaire (HAQ); the Psoriasis Area and Severity

index (PASI);

and the Dermatology Life Quality Index (DLQI).

Regards

Micky

[Guest guest]

Hi Darren,

I've been on Arava for about 12 months and I can only say positive

things about it.

I'm able to do a lot more things I like - like gardening again.

I've got more energy.

No side-effects for me.

I tried MTX before Arava and it was no good for me - it damaged my

liver. Arava hasn't.

Hope it works for you!!!!!

Love

Suzie

(New South Wales - Australia - just turned 50)

> Hello, I usually dont post many messages, in fact I think I have

also

> posted one or two since I have joined the group, I check the

messages

> everyday and am helped by the fact that I'm not alone.

>

> The reason for my posting, is that I have just been to see my

> Consultant for my yearly check up and he has decided to put me on

> ARAVA, I was just wondering if anyone has had any experiences of

this

> drug, good or bad.

>

> Sorry, my name is Darren, I'm 30 and from Northern Ireland.

>

> (Apologies for any spelling mistakes)

[Guest guest]

Darren,

I have been on Arava for five years. It has helped me sooooo much. I do

take MTX and Plaquenal, Celebrex, etc., as well. Hope you do okay. I have only

suffered hair loss, headaches and diarrhea.

Amy

[Guest guest]

Dennis, Arava worked very well to control my pain and inflammation. It

was a much better med for me than methotrexate had been. The only

problem was that my white blood cell count that had fallen below normal

on mtx continued its decline. I would still be " raving about Arava " if

not for that. I didn't have any other adverse side effects. My liver

profile numbers stayed in the normal range after the initial rise that

the loading dose caused. I hope that it will work for you and give you

some relief at last.

Sue

On Wednesday, May 11, 2005, at 11:21 PM, Dennis W wrote:

> I just found out that my Rheumy ordered Arava for me a while back, but

> nobody ever told me. His nurse knows I'm upset at the responses I've

> not

> had. I don't know of another Rheumy that I can afford, so I'll just

> pray

> that he and she will stay on target. I'm going to be watching closely.

>

> Has anyone had a bad experience with this med? Anything I should watch

> for

> besides the possibility of diarrhea? My goal is still being able to be

> a

> substitute teacher by the fall semester.

[Guest guest]

I have been on Arava for over a year and have not had any problems with it

what so ever. I am currently been able to be cut back to every other day

since my RA has been doing well. Hope you have as good of luck as I had.

Terri

[ ] arava

>I just found out that my Rheumy ordered Arava for me a while back, but

> nobody ever told me. His nurse knows I'm upset at the responses I've not

> had. I don't know of another Rheumy that I can afford, so I'll just pray

> that he and she will stay on target. I'm going to be watching closely.

>

> Has anyone had a bad experience with this med? Anything I should watch for

> besides the possibility of diarrhea? My goal is still being able to be a

> substitute teacher by the fall semester.

>

> Dennis

>

>

>

>

>

>

[Guest guest]

Hi Pam,

I developed peripheral neuropathy in both feet from the Arava. You can

google " peripheral neuropathy " and " Arava " and read up on potential (albeit

rare)

side effect.

However, my rheumatologist ignored my symptoms while I was on Arava, despite

repeated emails, phone calls and visits over a six month period that something

was decidedly wrong. Thus I was kept on the drug long after I should have

been taken off it. As a result, I probably have permanent nerve damage (which

cannot be repaired with surgery) and will have to take medication for the

rest of my life for it. It will take a year -- at least -- to determine the

extent of my nerve damage.

Good luck.

BeingIrish

[Guest guest]

I have been on Arava for about four years. There have been no discernable side

affects except for slight constipation when I first went on it. For me it has

been a miracle drug. I have had excellent results. Swelling is down and damage

to joints?see to have slowed to a minimum.

Good Luck? with it.

Walt?

[Guest guest]

Oh my goodness, and I think it is helping with the pain....

What were your first symptons of the peripheral neuropathy so I can

look out for any problems that may come up..

I do know that i " itch " all over and my blood pressure has risen.

However, my rhm tells me that it is not tha Arave causing these

problems.....

The Arava has been SO much better for me than the mtx..I was just so

sick when I tried to take mtx....With the arava I have nearly NO side

effects that I can tell.. I am just worried about the effects I can't

tell about...UGH

I still feel the soreness, it just is not as intense and the intense

pain has seemed to go away for now....I hope I am not just coming out

of a flare.....

Pam

Alabama

[Guest guest]

> What were your first symptoms of the peripheral neuropathy so I can

> look out for any problems that may come up.

> _________________________________________

Hi Pam,

My first symptom of peripheral neuropathy was sudden, violent

electric-shock-type impulses in my feet. They would cause my feet to literally

" jump " and

were quite painful. Thereafter I experienced tingling, like what you would

feel if your foot " went to sleep. " I would also experience extremes of hot and

cold in my feet that had nothing to do with my prevailing body temperature.

Finally, my feet swelled and went completely numb. However, they were so

sensative that I couldn't even have a bedsheet over them while I slept;

wearing shoes was torture. This all progressed over a six-month period, and my

rheumatologist ignored all these symptoms despite my numerous pleas that

something

was very, very wrong.

It's my understanding that if my rheumy had stopped the Arava when I first

told her of the problems I was having, the peripheral neuropathy would have

corrected itself almost immediately without permanent damage.

My new rheumatologist had me do a " cholestyramine wash-out " to try to remove

the Arava from my body. But even with that, it will be at least a year

before we know if the nerve damage is permanent.

I wouldn't worry too much about developing peripheral neuropathy from Arava

-- it's a rare side effect. However, if you do experience noticeable tingling

or electric-impulse-type shocks in your feet, I would suggest you contact

your rheumatologist immediately. My new rheumatologist said she had another

patient who developed the problem and she immediately took her off the Arava.

Also, please keep in mind that several people on this board have reported

very good results with Arava.

Good luck,

BeingIrish

[Guest guest]

Hi BeingIrish;

I had the same thing happen to me from taking Humira.

The neuropathy I'm left with isn't severe, but I

always know that it's there.

warm blessings,

jane

[Guest guest]

Hi,

Thanks for taking the time to explain the symptons to me and I will

take careful notice of any such developments!!!

Pam

[Guest guest]

Well somehow I missed this one. I’ve been on Arava for almost 4 years and

for the last year my neuropathy in my feet has gone off the charts. I

thought it was caused by my diabetes, which has been caused by being on

predinsone. Now it makes more sense since I stopped Arava for 6 months and

it let up a bit. I recently went back on it and my feet have been driving

me crazy. I’m now on Keppra for the neuropathy. I sure wish I had known

this was a side effect since so far I’ve been allergic to all the biologics

on the market.

At least I saw your email and can now stop taking it without wondering if it

was helping me at all. It also caused my skin to itch so badly I felt like

I was going mad at times. The sad thing is, it really helped my arthritis

in the beginning. I felt at least a 30% improvement, but I’m not sure it

was worth all these side effects. I guess since I have diabetes now, which

does go down as my predinsone levels do, I can’t blame it for sure on Arava.

As hard as it is to admit it, so many of these new drugs have side effects

that can be worse than the original disease at times. I know they help us

and for some of us have been wonder drugs. I just wonder if it’s worth all

the risks and the problems that we might and do face in the future for a few

years of mild relief. I know some of us really feel better on these drugs,

but in my case, it wasn’t worth the damage if Arava caused the neuropathy.

I can’t explain how bad my feet hurt now with PA and neuropathy at the same

time. Walking has become impossible especially since my arthritis continued

to advance in my knees and spine regardless of the Arava. I now use a power

wheelchair even in the house and getting out is just getting impossible

anymore.

I’m sorry this isn’t more positive, since I’m normally a positive person and

willing to try what ever the doctor suggests. Maybe I’ve been too willing?

Anyway, thanks for bring this up.

Sincerely,

Fran in Florida

[Guest guest]

> I've been on Arava for almost 4 years and for the last year my >

neuropathy in my feet has gone off the charts. I thought it was

> caused by my diabetes, which has been caused by being on

> Predinsone.

> ____________________________________________________

Hi Fran,

I am very sorry that you also developed peripheral neuropathy, possibly from

Arava. Your condition sounds like it's severe, worse than mine, and you have

my sympathy.

As we both know, peripheral neuropathy can also be caused by complications of

diabetes. In my case, before I suspected the Arava as the culprit, I

thought I might have diabetes, especially since it runs in my family. I called

my

pcp and requested that I be given a fasting test for diabetes and low and

behold, I am not even pre-diabetic. Now I am sure that Arava caused the

peripheral neuropathy, a belief shared by my NEW rheumatologist.

Regards,

BeingIrish

[Guest guest]

me too badly thinning hair ... from arava.

Joy

I have badly thinning hair because of the arava.

Hugs..a

Ohio

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

A Good Credit Score is 700 or Above. See yours in just 2

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[Guest guest]

Hi a,

Yes, they were steroid shots to accelerate growth. They worked, amazingly

enough! It took about 4 months (4 rounds of shots) but my hair grew thicker

and really fast. I'm going back again next week because like you, the Arava

really thinned it down. I'm lucky in that my dermatologist also suffers

from another chronic disease and he has this absolute paranoia about being

bald. :: So his specialty is hair growth due to secondary causes like

medicines. He works wonders for people going through cancer treatments and

chemo too. He donates a lot of time to the childrens' cancer center. For

anyone in the TN/KY area, he's in Mufreesboro Dermatology, it's Dr. Ken

Bell.

Hi ...steroid shots in your scalp for hair loss? How did that work?

Did you have to get quite a few?

I have badly thinning hair because of the arava.

Hugs..a

Ohio

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

A Good Credit Score is 700 or Above. See yours in just 2

easy steps!

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pgID%3D62%26bcd%3DMarchfooterNO62)

[Guest guest]

I didn't know that was one of the side effects ..I wonder why my doc didn't say

anything about that.

rascalsniche@... wrote: Hi Joy...my hair has always been fine and thin but

the arava was making it

so much worse. I could feel my scalp so well at the crown of my head. I felt

like i was going bald and the alopecia is one of the side effects. I'm just

glad that my rheumy said I could go off of it. The hair is coming back and i

even noticed hair on my legs again..so weird.

Hugs..a

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

A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

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[Guest guest]

She is diabetic so maybe that is it. I know it has been going on for a

while but she was being very evasive about things.

She has rheumatoid arthritis too.

We found all this out this year when she switched doctors. It has been a

real learning curve for me and my sister as we knew little to nothing about

any of the conditions until this year.

Sue

>

> Re: [ ] Arava

>

> Hi Sue,

> Due the doctors know what caused her Gastroparesis?

> Lori

>

[Guest guest]

That's tough Sue. I too have Gastroparesis but it's not caused by Diabetes (we

don't know why I have it). I was just wondering if it had been attributed to

any of the RA meds.

Lori

www.stitchingqueen.multiply.com

From: twoshaw

Sent: Sunday, December 06, 2009 8:27 PM

Subject: [ ] Arava

She is diabetic so maybe that is it. I know it has been going on for a

while but she was being very evasive about things.

She has rheumatoid arthritis too.

We found all this out this year when she switched doctors. It has been a

real learning curve for me and my sister as we knew little to nothing about

any of the conditions until this year.

Sue

>

> Re: [ ] Arava

>

> Hi Sue,

> Due the doctors know what caused her Gastroparesis?

> Lori

>

[Guest guest]

Dear Angie,

I've been on Arava now for almost 8 years and I have to say I¹ve had very

few side effects. My skin does itch from time to time and I did lose quite

a bit of my hair, but it grows back as soon as I cut my dosage back or stop

it for a short while. All in all it reduced my pain about 30%, but it

didn't seem to do much after 7 years or so. It could be my disease has just

gotten much worse and my tolerance for chronic pain has weakened over time

as well. I do get my blood tested every 6 weeks to be sure my liver isn't

affected. I've heard a lot of negative things about Arava, but my doctor

mainly does treat psoriatic arthritis people and he has almost all of them

on Arava. He thinks the side effects are greatly overstated. That said,

every one is different and I had horrible reactions to Humira and Enbrel,

while they have saved a lot of people's lives and quality of life. It takes

about 2 months to know if it is working, which is a long time, but once it

hits you can tell it's working.

I wish you the best of luck and it's a gamble for all of us when we try some

of these controversial medications. All I know is in 10 years my arthritis

is in all of my joints and nothing seems to slow it down or dull the pain

much anymore. My pain doctor wants to put in a neuro stimulator in my back

to confuse my brain,(which basically is already confused as it is..lol) and

so the pain signals don't get through. The main problem is this device

doesn't help arthritis pain. But since my arthritis has advanced so much I

now have severe neuropathy in my feet, legs, thighs and I have a burning

condition known as Erythromelagia, where my skin burns and turns bright red.

He is hoping it will help those problems at least f from my waist down. The

plan is if it works, to install one for the upper half of my body as well.

If you would have told me I'd be in this situation 10 years ago, I never

would have made it through all these years of pain. I guess it¹s good we

can't see the future after all.

Even though these drugs have bad side effects, the disease had plenty of

side effects as well. I'm currently in danger of losing my teeth due to my

jaws being destroyed by arthritis and the dentist thinks I have a year at

most to get something done to stop the bones from dissolving or I'll need

false teeth. I see a specialist in Feb so I'm hoping he can build me a

splint that will stop the progression of my jaws. It hit my jaws first. I

just have it in every joint of my body now and I'm losing strength and

endurance in my hands. My knees are totally gone, as are most of my toes

and ankles. It's a hard disease to deal with since it also attacks the

tendons and ligaments as well as the joints. I have 2 torn ligaments in my

knees and tendons as well. I'm not a good candidate for surgery due to COPD

and my over all condition is pretty weak. Both tendons in my elbows are

gone. I'm not telling you all of this for sympathy, but to let you stop and

think and consider the consequences of letting it go and ignoring the meds

on the market. I was worried about taking them as well, but I don't know

how bad I would be if I hadn't found Arava. Now my doctor is trying to

change my meds again, but I seem to be allergic to so many of them that just

trying them is a huge ordeal.

Best of luck with Arava. I take mine at night with a small snack so it

doesn't upset my stomach. I hope it helps you.

Take care, Fran in hot Florida

'

[Guest guest]

I have been on Arava for about 8 years now and it has helped me so much. I do

have to go for blood work every 3 months but it did wonders for me.

Elaine

[Guest guest]

Fran

I am a fellow Arava user for about 7 years now. It has been a godsend to me

however, recently I have begun having severe pain in my lower back when I stand

up from a sitting or laying position. Have you had the same Problem?

Walt

[Guest guest]

i'm really scared about starting this medicine. i'm waiting for liver test

results before i start it. sometimes i think i should just deal with it and go

on. yes i'm in pain but i dont know if side effects are worth it.