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So far, Plaquenil is a bust

Aug 27, 2009 - 4 comments




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!


Jun 02, 2009 - 2 comments

Rheumy was uninformed about more serious complications of Sjogren's, didn't understand the neuropathy at all, and couldn't see how constantly dislocating joints might lead to constant joint pain.  My symptoms all fit Sjogren's, Ehlers-Danlos, and the Neuropathy perfectly, but apparently that wasn't good enough for her.  She wants to diagnose me with Fibromyalgia even though the symptoms don't fit (no muscle pain, it's only in joints and gets worse when I dislocate; fatigue increases in proportion to my salivary glands swelling)  Oh, and she insisited that I must be anxious or depressed because EVERYONE is.  Not going back there!  However, I am starting Plaquenil, and the neurologist said I have an excellent chance of regenerating nerves now that I'm starting treatment.  Also, I found out people can actually live with no small fiber nerves, and since my autonomic symptoms are already pretty severe, I probably won't get much worse even if the Plaquenil doesn't help.  Fabulous news!  She thinks I might get back to having a "normal" healthy person life.  Once I sleep off the trip and hours at the Clinic, I know I'm going to start thinking of things I might be able to do again.  Heehee!  (I know, I know, it'll take time and PT and I won't be the same as before, blah blah blah, but still, Heehee!)

Oh, yeah, I meant to point out that I have nothing against Fibromyalgia diagnoses.  I know a lot of people suffer terribly from it.  I just think that if doctors want it to be taken seriously, it can't be applied willy-nilly.  If there are existing problems not being treated that are causing non-fibro-like symptoms, they should be treated.  Docs shouldn't just slap another inappropriate label on.

Monday, Monday

May 29, 2009 - 4 comments

Going to Cleveland Clinic Monday to discuss small fiber neuropathy and Sjogren's treatment.  So excited!  Trying to be calm and sophisticated; not working very well.  I have such hopes for treating the Sjogren's and feeling better.  It probably doesn't help that my salivary glands have been swelling so much lately.  The fatigue is so overwhelming that the idea of it ending is almost incomprehensible!  It's bizarre being excited and exhausted at the same time.

I have Sjogren's

May 07, 2009 - 4 comments

Just found out I have Sjogren's.  Well, at least there's a cause for the peripheral neuropathy.  Now I have to wait a month for a treatment plan.  Gah!