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Posted 9/15/2009 3:33 AM (GMT 0)
I've been feeling really well lately. My doctor has lowered my prednisone to 2.5mg daily and wants me to come off it next month. I started the new dose about a week ago. Still on the plaquenil. However, just this past weekend, I was exhausted! Sunday I felt terrible- achy joints, exhausted, massive headache all day, didn't move from the couch.
This morning I felt somewhat better and chalked it up to the fact that I forced myself to get up for work and moving around may have made me feel better. However this evening I feel like I've been hit by a truck and I noticed before I left work that my lymph nodes that are right above my clavicles may be swollen. They aren't red or tender- just swollen and my shoulders are achy.
Could this be lupus related? I'm assuming I should take myself to the rheumatologist tomorrow too.

One more thing, I thought my rheumy would be testing my ANA and antibodies more frequently. I came up positive the first time I saw her but none of the other antibodies or rheumatoid factor came up positive. Hence the diagnosis of UCTD. Should this be something she repeats more frequently? The first time I saw her was in May, I've seen her since then pretty regularly and she hasn't done anymore testing besides a creatinine, UA and CBC when I have seen her since then. Also, should I ask for a C3 and C4? She's never done those tests, either.

I hope everyone is doing ok! Anyone with any advice, thoughts, etc?
Posted 9/15/2009 4:42 AM (GMT 0)
What was your previous prednisone dosage?

I felt like what you describe when we tried to lower my dosage from 10mg to 5mg....had to go back up to 10 and work down again, about 1mg less a month. Right now if I go below 5mg after 2-3 days I start feeling like that again.

I would immediately go back to the previous dosage - I would almost bet that you'll feel better in 2-3 days if you do that. Of course, make sure to let your dr know all this is going on!
Posted 9/15/2009 4:46 AM (GMT 0)
Thanks, Lynn!

Did this include the lymph node swelling?  I think that's what has me worried the most- never expected that.

Posted 9/15/2009 4:47 AM (GMT 0)
Oh! Sorry....and my previous dosage was 5mg and she lowered me to 2.5 mg.
Sorry about the extra reply- realized I didn't answer that question.
Posted 9/15/2009 4:52 AM (GMT 0)
I feel the same way this week and have dropped from 5 to 4 mg a day. I'm determined to stick it out, though, even though I have been in bed for few days. I also caught a cold which might have caused me to flare. it's such a struggle. How long have you been on prednisone? I don't ever have swollen lymph nodes but would be worried like you if I did. Let us know what the rheumy says if you go in tomorrow.
Posted 9/15/2009 4:55 AM (GMT 0)
Patty,
I've only been on it since May. Started out at 10mg and she has been tapering me since starting me on Plaquenil.
Posted 9/15/2009 5:03 AM (GMT 0)
I personally haven't had swollen lymph nodes while tapering but I seem to remember that some of our members have.
Posted 9/15/2009 5:25 PM (GMT 0)
So, I called my rheumatologist today and she was off today (of course, the one day I feel terrible- just my luck LOL)
Anyway, I spoke to the very nice rheumatologist on call who suggested upping my prednisone to 5mg. He seemed concerned with the lymph node swelling as it can mean many things and at this point there is no evidence of infection. He stated that it can happen during a flare. He wants me to watch the lymph nodes until the end of this week and call to see him if the swelling isn't down so he can assess them and possibly order a CT scan.
Sigh.
I really hope this all turns out ok. I'm a little scared by this.
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