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Good morning group!

It has been awhile since I have been able to check in. I saw a's note on

ARAVA. I have been on ARAVA since May. It seems to be helping yet I have been

having Palindromic Flares. I have Palindromic Rheumatism as well as RA and I

hadn't had a PR flare for two years until this month. Palindromic causes a

large joint (knee,hip,shoulder) to swell beyond belief for about 24 hours then

it goes away like nothing happened. Sounds crazy, but it's true.

I see my Rheumy next week and will be discussing this with him. Overall though

I feel pretty good. Not as fatigued and my hands are much better. I am on 11mg

of Prednisone as well. Sometimes I don't know if the Pred is what is working or

the ARAVA. I have been to chicken to reduce my Pred. I was supposed to reduce

it by .5 this month but I have had a few flares.

No side affects with ARAVA.

Hope this helps! Welcome new members! You will learn a lot from this group!

They are all great people!

Pat

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  • 2 weeks later...

Ann,

I have been an Arava for several months now and am starting to decrease

my prednisone, so it must be working. I rarely take pain pills anymore

either. I have a new one called Vioxx that works great because it

attacks the inflammation not just the pain. Get rid of the inflammation

and you get rid of the cause of the pain, not just cover it up. I like

that.

Jenna

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Homepage: www.geocities.com/jennakayfrancis

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Ann,

I like to hear your fighting spirit. I too was told I would be in a

wheelchair before I was 30. I am now 47 and am still fighting to stay out

of it!

Everyone is affected differently from this disease. I am a slow progresser,

while other may wake up one day and have every joint involved. I wish they

knew why some people get it so aggressively. It must have been difficult

to raise 4 kids while so sick. I know what I went though with just 2! I'm

glad you found us, and hope to get to know you better.

a

----- Original Message -----

From: Ann Kolofer <rkolofer@...>

< egroups>

Sent: Wednesday, August 23, 2000 10:24 PM

Subject: [ ] Arava

> Hi everyone,

> Catching up on messages since I was on bed rest for the past

> three days. Had a flare up and a low grade fever.

> Started my Arava today now that the fever is gone and no side

> effects yet. I can't say much about it yet but will be glad to get

> the next two pills down and gone. I have to take the (3) 100mg

> pills and then I am on the 20 mg after that.

> To answer a few people I raised four kids with my RA and it

> seemed to work out ok. The year after I had my last one was

> the year I was told. I was 29 then and it was 1971. Lost track of all the

> hospital stays and emergency room visits because is progressed very

quickly.

> I will be 58 on the 25th of this month and I am just now having to be in a

> wheelchair. What I am trying to say fight with all you got and do not let

it

> win. If the doctor at the Cleveland Clinic could see me now he would be

very

> surprised. I was suppose to be in a wheelchair back in 1980.

> Ann

>

>

>

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

>

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  • 2 weeks later...

Hi June:

Just had to tell you I love Toronto. My husband and I were there in Oct.

1997 for our honeymoon. We really want to go back again. We saw Phantom of

the Opera at the Pantageous Theatre, wonderfuling sites and dining and just

an overall neat city. We stayed at the Days Inn downtown which was in the

center of everything. I was amazed that we could go out late at night

walking without worrying too much about crime. We saw many women walking

alone at night which was very surprising to us. There are few large (or even

small) cities in the U.S. where you can do that. We also took a day trip to

Niagra Falls which was breathtaking. Your city is so interesting and

diversified. There are so many people there from so many different

countries. You live in a really neat place.

Second, I cannot believe that you are 69 and are graduating from that

program. I am so very impressed. You would never get my healthy mother when

she was 55 to anything like that. You are one heck of a role model lady. I

love it!!!!

Jeannette

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June,

Congratulations on completing your course. I think as many people who can

should try to go to school or take courses. It is very good for the mind.

Hope your flare ends soon and you start to feel better.

Congratulation again,

----------

> From: JUNE <juner24@...>

> onelist < egroups>

> Subject: [ ] Arava

> Date: Tuesday, September 05, 2000 10:49 PM

>

>

> Hi everyone,hope you all had a good Labour Day weekend. Arava is a med I

> am not familiar with,do we have it in Canada,maybe called something

> else? I will be seeing my rheumy on Sept. 11 and am trying to get lots

> of info to discuss with him. I may be too late for the Enbrel study

> since it is rumoured it may be approved here by the end of Sept.Unless

> there are still studies going on with Remicade it is not possible

> financially for me. There is a cap on my company plan of $25,000.

> I have completed the course and only have my one to one presentation to

> do and then we graduate on Sept. 24. It has been very exciting and

> fulfilling to know that even at the age of 69 you can still learn. The

> downside is that I have been a flare now for nearly two weeks. I stepped

> up the Prednisone to 5mg but it has not helped.

>

> I would like to welcome and Sylvia to our wonderful group,nice to

> have you both here.

>

> I am still wading through tons of mail,for some reason every message

> downloaded 3 times and I am going crosseyed reading the same message 3

> times.

>

> ,September is here and you never did get to Toronto.

> Hugs to all

> June(freezing in Toronto)

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Our chat room: www.delphi.com/RheumatoidArth1/start

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Can someone tell me if Arava is what the drs will change to when the MTX is

causing liver problems?

Drs office called yesterday and jesse's liver enzymes(spelling) are up but

want to wait until his next set of labs before he decreases the dosage or

changes it. But good news. 's MRI showed just normal erosion from the

JRA. which means there is nothing in there to warrent a trip to the hand

surgeon just yet. Thank God.

shelly

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I can't answer you question about Arava, , but great news about

's hand!

----- Original Message -----

From: <12372101@...>

< egroups>

Sent: Wednesday, September 06, 2000 8:04 AM

Subject: Re: [ ] Arava

> Can someone tell me if Arava is what the drs will change to when the MTX

is

> causing liver problems?

>

> Drs office called yesterday and jesse's liver enzymes(spelling) are up but

> want to wait until his next set of labs before he decreases the dosage or

> changes it. But good news. 's MRI showed just normal erosion from the

> JRA. which means there is nothing in there to warrent a trip to the hand

> surgeon just yet. Thank God.

>

> shelly

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  • 2 weeks later...

Hi Judy,

I have had excellent results with Arava. I first started it in January 99. I

noticed improvement right away. I didn't have to wait 3 months. It was over

night help. I did stop taking it a few months back to go back on MTX with the

Remicade. But the MTX did nothing and I went back on the Arava. But this

time, I am taking the Arava every other day and it works great! I was in a 3

month long flare while on the MTX. I called my doc and said, I want to go

back on Arava. We went every other day bcs I had a rapid heart beat. Anyway,

the Arava began working after 3 pills in 5 days. I was impressed the first

time around when I went on it. And it impressed me again.

~Rainy Sue

> I am getting a little nervous about taking Arava but I know some of you

> are taking it with good results.

>

> Hugs

> June

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Delanie, It's so scary hearing all these side effects from the

Pred's. Makes me think once, twice, three.... before even

considering this med.

It's wonderful to hear that you are practically pain free and that

your diet is a contributing factor. Keep up the good work.

Regards,

Sylvia

--- In egroups, Jim & Delaine Lowry <keywest@u...>

wrote:

> I've been on arava for almost 2 years and have not lost any hair. I

> don't

> know if it worked for me very well as I was also taking 8

methotrexate

> pills a week.

>

> The roughest time for me was when I was on prednisone and I gained

so

> much weight and felt like I wanted to " jump out of my skin " . After

I

> weaned myself gradually off of the prednisone, I felt much better.

Of

> course, I hurt very much everytime that I lowered my dosage.

>

> I have many pain free days now that I have changed my diet and cut

> out dairy, coffee, sugar, and all processed foods. When I was

eating

> anything that I wanted, the pain was so much in both ankles, knees,

> elbows, wrists, and hands that I had to take 100 mg of amitriptylin

to

> sleep at nights. I also needed vioxx50.

>

> But, now, I am pain free most days except when I eat something that

I

> shouldn't eat. And I'm not taking any amitriptylin to sleep and I

don't

>

> need the vioxx50 except when I eat something that I shouldn't have

> eaten.

>

> If I knew what the prednisone would do to me, I would have never

taken

> it. But the arava and methotrexate have worked very well for me.

>

> Delaine

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  • 2 weeks later...

Hi June,

When I first started the Arava in January 1999, I had overnight success. I

was truly impressed and amazed. When I restarted it after being off it about

3 months, I went on it every other day, rather than every day. so after only

3 pills at 20 mg, I had success again. My body responded very quickly to this

drug. The Arava and the Remicade seem to be my cocktail.

~Rainy Sue =)

> Hi Rainy Sue, how long did it take for the Arava to kick in? I started 9

> days ago and so far have not noticed any difference. I stopped the

> Imuran for 3 days before starting Arava. I guess I will know if I can

> stay on it after my blood test results which I had done today, come in.

>

> Hugs

> June

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Hi June,

I just thought I would jump in here and say it took several weeks for Arava

to start helping me. I continued to improve for 6 months. Everyone is

different. It works faster for some than for others. Don't give up on it

if it doesn't work right away. Hope it kicks in soon and works well for

you.

T.

----- Original Message -----

From: JUNE <juner24@...>

onelist < egroups>

Sent: Friday, October 06, 2000 6:19 PM

Subject: [ ] Arava

> Hi Rainy Sue, how long did it take for the Arava to kick in? I started 9

> days ago and so far have not noticed any difference. I stopped the

> Imuran for 3 days before starting Arava. I guess I will know if I can

> stay on it after my blood test results which I had done today, come in.

>

> Hugs

> June

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

>

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Hello there, My name is Bonnie and I signed on to this group recently and

thought I had better check in before II am considered a lurker. I have some

kind of inflammatory arthritis and have had for years. My sed rate is always

elevated but I am sero-negative. I also have other auto-immune stuff going

onsych as low thyroid. For six months I have been having hives especially on

my head and my rheumatologist prescribed doxepin. My primary care doctor

added Cimededine to that. I have also been taking hydroxozine. I have

basically been asleep all week. Finally my hives arenot itching as much. and

I am beginning to function again. Next week I will begin plaquinal again.

I also take piroxicam an anti-inflammatory which I love. I hads to stop both

those meds for a while because liver enzymes were elevated. And I have

fibrmyalgia

Ny RD explained that auto-immune diseases are linked and there are genetic

clusters. I found some good websites. Thank you for the thyroid one. There

is an excellent list of links art Autoimmune Disease On Line. aarda.org is

especially goo

I am so impressed at how much knowledge and comfort uou share oin this

group/ Does anyone suffer with chronic hives{uticaria|? Take care. Bonnie

Jo

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June, I really hope this works for you and good luck with the

results. Keep us posted.

Regards,

Sylvia

> Hi Rainy Sue, how long did it take for the Arava to kick in? I

started 9

> days ago and so far have not noticed any difference. I stopped the

> Imuran for 3 days before starting Arava. I guess I will know if I

can

> stay on it after my blood test results which I had done today, come

in.

>

> Hugs

> June

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Rainy Sue,

This is the success stories we all like to read about. And little

girl, we need to discuss you drinking problem (cocktails???)

heeee,heeeee.

I would love to lose some weight, but not at the cost of my stomach

or liver, or whatever. I have a saying that I use for just this

occasion. " I was born a size 14!!!! " I don't remember a time when I

was not a size 14. No, my mind is not shot to pieces yet, I just

remember always being fat.

Regards,

Sylvia

> Hi June,

>

> When I first started the Arava in January 1999, I had overnight

success. I

> was truly impressed and amazed. When I restarted it after being off

it about

> 3 months, I went on it every other day, rather than every day. so

after only

> 3 pills at 20 mg, I had success again. My body responded very

quickly to this

> drug. The Arava and the Remicade seem to be my cocktail.

>

> ~Rainy Sue =)

>

> > Hi Rainy Sue, how long did it take for the Arava to kick in? I

started 9

> > days ago and so far have not noticed any difference. I stopped

the

> > Imuran for 3 days before starting Arava. I guess I will know if

I can

> > stay on it after my blood test results which I had done today,

come in.

> >

> > Hugs

> > June

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Welcome Bonnie Jo, We wouldn't know you were lurking until you

mentioned it.

I am semi-diagnosed. Still waiting for more results. I too get the

hives sometimes. However, I don't consider them chronic. Maybe they

are, but how would I know. I believe you are the first one that has

mentioned the hives in this group. At least in the few months that

I'm here anyway. Do you get them almost always in the same areas of

the body? I do. My upper thighs, buttocks, instep of feet, calves,

back, knees, underside of forearm, stomach and less in frequency on

my face. Many years ago I went to an allergist and could not find

anything common that was causing these hives. He did a Hepatitis

blood test and it came out positive for the less severe one, I forgot

which one is the one you get from eating shellfish and/or chinese

food. Anyway, he said it was the Hep causing it. A more recent Hep

test did not show positive anymore. I thought that strange? I

thought that once you had Hepatitis, you had it for life....

Happy you joined us. You will like everyone here.

Regards,

Sylvia

> Hello there, My name is Bonnie and I signed on to this group

recently and

> thought I had better check in before II am considered a lurker. I

have some

> kind of inflammatory arthritis and have had for years. My sed rate

is always

> elevated but I am sero-negative. I also have other auto-immune

stuff going

> onsych as low thyroid. For six months I have been having hives

especially on

> my head and my rheumatologist prescribed doxepin. My primary care

doctor

> added Cimededine to that. I have also been taking hydroxozine. I

have

> basically been asleep all week. Finally my hives arenot itching as

much. and

> I am beginning to function again. Next week I will begin

plaquinal again.

> I also take piroxicam an anti-inflammatory which I love. I hads to

stop both

> those meds for a while because liver enzymes were elevated. And I

have

> fibrmyalgia

> Ny RD explained that auto-immune diseases are linked and there are

genetic

> clusters. I found some good websites. Thank you for the thyroid

one. There

> is an excellent list of links art Autoimmune Disease On Line.

aarda.org is

> especially goo

> I am so impressed at how much knowledge and comfort uou share

oin this

> group/ Does anyone suffer with chronic hives{uticaria|? Take

care. Bonnie

> Jo

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OOps.....darn computer sends off blanks before I send anything..so

sorry.....but Bonnie.Hi yes ..I had hives in the very beginning of being

sick ...had them on my upper chest and across my stomach.....and then started

having breathing problems too.reactive airway.....took for ever (or so it

seems ) before they connected it all to auto immune problems...this was also

first time I was put on mega doses of predisone...which at time helped but

then ended up taking forever to get off of. I still get hives on feet and

arms occassionally buit nothing like that first time.......and I am allergic

to certain meds .....aspirin, synthetic codeines ......I started taking

baking soda baths especially when on my feet ....... Judy

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Please excuse this @#$^%* & @##$@# computer when it throws blank posts out

there ..ever since it had that Mime virus it just sends before it's time off

and on.Thx. judy

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Thanks, June.

Ellana

----- Original Message -----

From: " JUNE " <juner24@...>

" onelist " < egroups>

Sent: Saturday, October 07, 2000 12:11 PM

Subject: [ ] Arava

> Hi Ellana,it is a prescription drug.I think it has been in the States

> for awhile but recently approved in Canada.

> Hugs

> June

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

>

>

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