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Re: Arava to Walt

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Dear Walt,

I've been on Arava about the same about of time you been taking it. I also

feel like it isn't working as well as it did in the beginning. Do you think

it's just possible our disease has just gotten worse? I know for sure mine

has spread to almost every joint in my body now. So Arava didn't help me

much as far as slowing down the disease, at least as far as I can tell.

Have you considered trying something else? I've had bad reactions to every

biologic I've tried, but my doctor wants me to try Orienca, which even with

insurance is going to be almost a $1000 a month. It is also not recommended

for people with asthma and I have that and COPD as well.

My rheumy seems to think that the prednisone I've been on for almost 7 years

is going to kill me if I don't find something else that will work instead.

The problem is I can't seem to get my prednisone lower than 15 mg and I know

about all of the harmful side effects. ( I watched both my parents pass

away from emphysema and even though prednisone saved their lives and gave

them probably an addition 15 years, it still had a lot of bad side effects.)

It¹s not just the pain prednisone helps me with, it allows me to even get

from my chair to my wheelchair. Otherwise, if I go completely without it or

as low as 10mg, I develop lung problems and feel like I¹m going to fall any

second my flaring gets so bad.

I was just curious if your doctor is considering something else? Thanks for

listening,

Fran in Florida

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I too suffer from COPD as well as arthritis and a slight heart problem. The back

problem has just started about ten days ago and since I did nothing to cause a

sprain, I must assume that it is an increase in the PA. I think it is possible

that the Arava has run its course. I will not go back on prednisone as it caused

me to balloon in weight.

I have already been on Humira and was taken off it when I tested positive for

TB. I had to go on a 9 month treatment for that even though I never actually had

TB.

I do not know what the future holds but keep in touch. This is a great group

Walt

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Dear Walt,

Yes the same thing seems to be happening to me with Arava. I've heard the

same thing on almost all the biological drugs, that they just wear off after

time. Of course, all of us are different so it's bound to hit us at

different times and in different ways. I just know that all my pain has

increased and my joints all seem to be affected. I'm scared to try most of

the biological have I had such horrible reactions to Humira and Enbrel.

Both almost put me in the hospital and Humira caused such a bad chest

infection, I ended up on 60mg of prednisone for almost 5 months and

developed congestive heart failure. That was before they announced that

Humira was linked to heart problem, but I had never had a heart problem

before and never had since I " ve gone off Humira. My immune system is

weakened from the prednisone over the past 7 years and my rheumy wants me to

try Orienca. But even with my so called wonderful insurance my copay is

over $1000 a month, and it is said to not be used with any lung condition.

Having asthma and COPD that seems to be it for me, but my rheumy is

convinced that the prednisone is going to kill me.

As far as my back pain increasing, I would say it's increased along with all

the other joint pain. I can't say it's worse than the other pains. Well

it's not a very happy situation, but we are all still trying to get by and

praying for a miracle.

Good luck,

Love, Fran

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