Re: Jane, Hi from Florida!

[Guest guest]

Dear Jane,

I feel bad I don’t post as much as I used too. There are so many new people

and I haven’t kept up with everyone. My hands have been bothering me with

arthritis and erythromelalgia, so it makes it hard typing sometimes.

Sometimes I can just type through the pain and then there are days when I

don’t want to touch the computer. So that’s my excuse anyway…lol.

I’m glad the plaquinel is working for you, or at least you think it might

be. Like you said, something has to work and be your magic pill. For me it

’s been Arava, but I have to believe it was stronger when I first went on

it. I think sometimes our bodies get used to the medication and it loses

its effectiveness after a few years. I’m still taking it though and trying

to deal with the itching it cause. Sometimes it drives me crazy. Like all

medication, it affects all of us differently. I’ve also had chronic bladder

infections since I’ve been on it too, so that’s probably another thing it

causes from time to time. Or maybe I’m just lucky…lol.

So far this Tropical Storm hasn’t been too bad near us. We’ve got about 5

inches of rain yesterday, but we really needed it. Florida has been in a

really bad dry spell and hopefully this will fill the lakes back up and give

the alligators a place to go. They keep ending up in everyone’s swimming

pools since it’s so dry. Luckily, our pool is screened in, but we do have

frogs and snakes from time to time to deal with. It keeps my dogs happy

though trying to catch them. I just hope we don’t have a hurricane season

like we did last year. I can’t imagine trying to deal with what New Orleans

went through. I doubt I’d last a week. First of all, my husband would

probably shoot me for complaining so much…lol. I hate it when the air goes

off and it gets hot in here. I can’t take the heat at all anymore, and I’m

in the worst spot for that unfortunately. I try to treat it like the cold

weather up north and just go out when I have too. Anyway, we are all

hoping things are better this year and the storms if they happen are milder.

I’ve had trouble lately with my knees too. My family doctor did an MRI and

found I have 4 torn tendons, bone bruises, baker cysts, and basically bone

on bone on both knees. He said I need 2 new knees, but I’m pretending that

I didn’t hear him. Right now surgery doesn’t appeal to me, and so far I can

still walk around the house with my cane. I’ve been trying to swim more,

and it feels great when I’m in the water. The only problem is when I get

out. Usually the next day, I can’t move at all. So I’m trying to figure

out a workout that isn’t too hard on my knees and still helps me with

exercise. There is such a fine line in over doing it.

Anyway, that’s about it on me. I’m hanging in there and taking it a day at

a time. It’s much easier that way. I hope you start feeling better soon

Jane. It’s been great talking to you. Take care and keep in touch. Love,

Fran

Hi Fran,

Well, I started the plaquenil Friday night, despite my

fears. I even filled my 14 year old step-daughter in

on what I was taking and why and what to tell the 911

operator if she finds me lying unconscious on the

floor! But, so far, I'm pleasantly surprised to only

feel like I have a mild case of the flu. I even made

it to a dear friend's birthday bbq yesterday with my

husband, and I rarely go out anymore. So, maybe

plaquenil will be good for me. I've already tried

Sulfasalzine, Enbrel and then Humira, something has to

work. Oh, and I remember reading that it can make P

worse. I'm fortunate that I've only ever had some

small patches, so I'm hoping that I won't get any more

than that

How are you doing these days? Bracing for hurrican

season?

warm blessings,

jane

[Guest guest]

In a message dated 6/13/2006 4:38:03 P.M. Pacific Daylight Time,

fran@... writes:

Anyway, that’s about it on me. I’m hanging in there and taking it a day at

a time. It’s much easier that way

Hi Fran,

I haven't seen you post in a while...glad to hear you're OK. First

hurricane that I am not in FL for, can't say I'm sorry about that!

I was thinking about your tips, it's been a while since you posted them and

seems like some of the newbies might benefit from them...

[Guest guest]

Dear ,

Thanks for info on Arava. Your remark and 's about kidney problems

has me sort of worried. My blood levels were off one time on my creatine,

but they straightened out the next month. I think I will call my

rheumatologist and see what he thinks. He will probably yell at me for not

getting the liver reports to his office. I have my family doctor do the

test because the other doctor is an hour away and it takes months to see

him. I feel like I get better care with my family doctor just because he is

more available. Anyway, thanks for the tips and I'll keep watching and I've

stopped the Arava until I speak to my doctor just to be safe. I needed a

break from the itching anyway. Thanks, Fran

If the arava is causing itching you should call your doctor . I was on arava

for 6 weeks and have an enlarged liver. I would get off of it if I were you

.. Itching is usually a sighn of a problem with your liver or kidneys . cathy

from ma.

[Guest guest]

Hi, Fran. Just a tip about the blood work reports - have results of

any testing by any of your doctors faxed or sent to all the others.

It's good for them all to have all the info. Also it can save on some

duplicate testing. Most of us are seeing, at minimum, Dermatologist

and Rheumatologist plus Primary Care Pysician. Make sure they all

stay in the loop, which is easily done via fax or mail.

You might have to sign a consent form, but it's trivial. By the way,

I also have each Dr. fax any lab results to me, too. That way, I have

a record in my file which I can take along if I have to change Drs. or

see a new specialist.

regards,

sherry

I think I will call my

> rheumatologist and see what he thinks. He will probably yell at me

for not

> getting the liver reports to his office. I have my family doctor

[Guest guest]

Several people have died from the arava. lso many have suffered liver damage

.. I have an enlarged liver. cathy from ma

[Guest guest]

Is it off the market?

Jeanette

[Editor's Note: No, Arava is still very much on the market. The incidence of

liver problems is extremely small and to date the FDA does not believe there is

a serious enough problem to warrant its removal from the market. I was on it

for awhile but stopped it because I felt it wasn't helping my PA but my liver

showed no additional toxicity while I was taking it and I was tested monthly. As

with all medications (and foods for that matter), there is a risk, but the known

risk at this point is preceived to be very small. Unfortunately, from MA

is one of the people for whom Arava was a poison. Kathy F.]

Re: [ ] RE: Jane, Hi from Florida!

Several people have died from the arava. lso many have suffered liver damage

. I have an enlarged liver. cathy from ma

[Guest guest]

from MA, I am so sorry to learn of your troubles. Prayers, -Betz

Betsy Jack itsbetsy@...

Re: [ ] RE: Jane, Hi from Florida!

Several people have died from the arava. lso many have suffered liver damage

.. I have an enlarged liver. cathy from ma

[Guest guest]

Thanks for the info Kathy F.

Jeanette

Re: [ ] RE: Jane, Hi from Florida!

Several people have died from the arava. lso many have suffered liver damage

. I have an enlarged liver. cathy from ma

[Guest guest]

thanks . keep a check on yo liver. ..cathy