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So far, Plaquenil is a bust

Aug 27, 2009 - 4 comments
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Plaquenil

,

sjogren's



Well, it's a few days short of three months since I started Plaquenil to treat Sjogren's.  So far, no big improvement.  I have 4 hours here, and maybe a day there that all the swelling goes down, the exhaustion lets up, and I start to feel like myself (aside from passing out), but generally no improvement.  In fact, many days, the swelling has been much worse than in the past.  Some days my glands and eyelids swell so bad it looks like I'm having an allergic reaction, and yet I have absolutely no allergies to anything.  I've started having a lot of tightness and swelling behind my breastbone, about where the thymus is located, so now I'm concerned about that.  Not going back to the rheumatologist until the Plaquenil has had six months to work, so I can't really ask him about the thymus.  I know the Plaquenil takes time to have its full effect, but surely the swelling shouldn't be getting worse.  And of course, the rare good hours make it even harder when the swelling comes back!

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984010 tn?1255799738
by RockinRuth, Sep 17, 2009
Have you seen an ENT?  My ENT said I might have to have an operation something about canals or something narrorwing which cause more problems with the Lympnoids.  ENT said to visit him every six months and to stay in touch.

881165 tn?1265988188
by AireScottie, Sep 18, 2009
Well, as of this past Monday, Plaquenil has finally gotten off its lazy behind and done some work!  Swelling is almost gone, though it comes back mildly later in the day.  I get 5-8 hours a day without fatigue, which is unbelievable, because it's been so many years that I had forgotten what life was like without fatigue.  The joint pain is almost gone everywhere but my back, where it has decreased.  Fever is back down.

Last week, though, I ran a fever all week, which makes me wonder: will I keep getting flare-ups my whole life?  Guess I can't say until the Plaquenil has been in my system for another few months.

984010 tn?1255799738
by RockinRuth, Oct 06, 2009
I can't start Plaquenil until I have my eyes checked because its been over a year since I have been to the eye doctor.  Have you spoken to anyone in regards to what other treatments there are.  I really hope and pray Plaquenil works for me.

881165 tn?1265988188
by AireScottie, Oct 07, 2009
There are stronger immunosupressants.  I think methotrexate is next, then Imuran.  But since they're stronger, I think there's more chance of getting sick on them.  Probably not great with little kids.  The Plaquenil is now giving me about two decent days in a row, then one where I feel like death warmed over again.  Some of that might be my fault though, because I feel so good on the good days that I do a lot more than normal.  I'm finding that after a good day where I exercise a lot more, all the swelling flares up again.  I'm going to try to restrain myself on the good days and see what happens.  Plaquenil has made a huge difference, but so far it has not totally controlled the swelling or fatigue.

There are also a few medications like Evoxac and Restasis to help with dry mouth and eyes.

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