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Re: What's Next

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They had tried me on methotrexate first and it didn't help me.

Plaquenil has been a life saver for me so far. I haven't ever tried

Orencia. Sorry I don't know anything about that. I have the lupus

overlap (MCTD) so I can't do the biologics either. Anyway he is

thinking about Sulfasalazine with me and he has also mentioned

Imuran. Just thought I would throw out a few options you man mention.

Good luck to you.

>

> Dear Group,

>

> I see my rheumatologist in two weeks to see what treatment I can

> FINALLY start again. As you may recall I can't go back on Enbrel

or

> Humira (boooo!!!) because of the possible drug induced lupus with

me

> and the TNFs, so once I get my readings back on my ANA he and I

> discussed possibly starting Orencia to get off the Prednisone, or

> perhaps even Plaquenil whether or not there is a lupus overlap.

Has

> anyone had any positive results with Orencia? Has Plaquenil helped

> anyone with RA? I can't take Methotrexate because it gave me

horrible

> mouth ulcers (even with folic acid) and it really didn't help my RA

at

> all.

>

> Thanks very much!

> Cheryl

>

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I have had wonderful results with plaquenil and minocycline. At my

last visit in early July my rheumatologist could find no clinical

signs in me anymore -- no swelling. I still have some early morning

stiffness, a little residual pain in my right hand, and a little

fatigue. But that's it. I have more energy that most healthy people.

So definitely give plaquenil a try. It's really a very benign drug if

you are not one of the rare cases with eye complications. And also ask

about minocycline. I am down to just 200 mg of plaquenil daily, and

100 mg minocycline MWF. It is also an approved DMARD on the arthritis

foundation website, and whether its the anti-inflammatory effect or

the antibiotic effect, it is helping me. And it also has almost no

side effects -- they have been giving it to teenagers for acne for

years.

Bonnie

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Bonnie,

Thanks very much for the advice. I'm going to talk to rheumy about

these DMARDS! I didn't have much success with the Methotrexate and I

really miss the Enbrel (sniff, sniff).

Cheryl

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  • 1 year later...

These kids are great at knowing what is working and what is not. I hope you get

into the doctor soon. My daughter has gone through about 4 " cocktails " ..

eventually something will work. We are on Remicade and Arava right now and she

is doing pretty good. Hard to know for how long but keep trying. She needs to

button her pants!!

________________________________

From: Anne Bacon <annebacon@...>

Sent: Tue, December 15, 2009 5:36:09 PM

Subject: what's next

Hi all,

Just a recap: was diagnosed last January with poly. She started with

mtx and hydroxychloriquine (sp?) she did not improve so they increased the

mtx. Still no improvement, so she was put on Enbrel in August. She is

still not under control and seems to be getting worse.. Today she couldn't

button or unbutton her pants and she asked me to call her dr (isn't it

terrible when a 10 year old ASKS you to call the doc?) Anyway, what is

typically next? Any guesses?

Anne

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Humira, Remicade infusions??? We have not been down that route they have to find

the right mix for her. I am sorry. I have been there before call and make

appointment everyone has the right to be painfree.....I hope she gets some

relief soon. Terri B

From: Anne Bacon

Sent: Tuesday, December 15, 2009 6:36 PM

Subject: what's next

Hi all,

Just a recap: was diagnosed last January with poly. She started with

mtx and hydroxychloriquine (sp?) she did not improve so they increased the

mtx. Still no improvement, so she was put on Enbrel in August. She is

still not under control and seems to be getting worse. Today she couldn't

button or unbutton her pants and she asked me to call her dr (isn't it

terrible when a 10 year old ASKS you to call the doc?) Anyway, what is

typically next? Any guesses?

Anne

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When this happened to my son, they started Humira. It is supposed to be every 2

weeks, but we have to do it weekly. Our doctor says that Orencia (IV drug) is

next for us. is having a rough month. Hopefully we can stay on the

Humira.

>

> Hi all,

>

> Just a recap: was diagnosed last January with poly. She started with

> mtx and hydroxychloriquine (sp?) she did not improve so they

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