Prednisone was helping...

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Jade13
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Date Joined Oct 2006
Total Posts : 81
   Posted 9/25/2013 4:31 AM (GMT -6)   
Hello all, I was wondering if any of have been on 5mg of prednisone that was working for a while but then my pain came back. My Rheumy now has me taking 10mg and it helped tremendously. We are still trying to find out if it's lupus. I have tested borderline on all of my labs, but yet my symptoms all point to it. I'm just still trying to figure this all out..

Post Edited (Jade13) : 9/25/2013 3:43:43 AM (GMT-6)


Lynnwood
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Date Joined May 2005
Total Posts : 7723
   Posted 9/25/2013 11:08 AM (GMT -6)   
It isn't unusual to need an increase in prednisone.

You do NOT have to have any particular blood tests to be diagnosed with lupus. It is diagnosed by having 4 of 11 symptoms, only one of which is a blood test.

If your rheumy is talking like it's diagnosed by a blood test only, you might want to get a second opinion from another rheumy.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

aimsgirl16
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Date Joined Jun 2008
Total Posts : 1470
   Posted 9/25/2013 12:56 PM (GMT -6)   
Are you on any other medications besides the prednisone? Also have you tried a NSAID?
Amy
Lupus Moderater


dialysis from lupus nephritis

Jade13
Regular Member


Date Joined Oct 2006
Total Posts : 81
   Posted 9/25/2013 5:10 PM (GMT -6)   
Thanks for the replies :)

All my Rheumy gave me was Prednisone and Azulfidine (which did not
agree with me). I have also been taking 600mg of Motrin a day
if the pain gets really annoying.

What I found strange was that I was feeling pretty good on 5 mg of
Pred a day but then he wanted me to taper to 5mg every other day.
Which was ok for a couple days. So I decided to go to the fair with my family.

I guess that was a mistake because we were there most of the day and the next morning I felt awful! Back to really bad joint pain in my hands, wrists and knees and headache. I know he is leary about diagnosing me with Lupus but I have 4 of the symptoms, Fatigue (which the Pred.only helps a bit) Joint pain, headaches and on/off
malar rash. I just want to get on the right meds and get back to work! ( I have been off since June) I just hope I can still physically do my job. I work as a Surgical Tech which can be pretty stressful and it includes a lot of standing. It was getting to the point where
my lunch break existed of me sleeping in my car just to keep going.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 9/25/2013 6:42 PM (GMT -6)   
Generally a rheumy starts with prednisone to control the active inflammation, and plaquenil which inhibits the progression of Lupus.

Azulfidine is most often used to treat Rheumatoid Arthritis. However, here is a post from someone taking it for Lupus www.healingwell.com/community/default.aspx?f=29&m=1295102.

But I'm surprised you still have so much fatigue. Rheumies often pick from these: Imuran, Cellcept, MTX - never know which one might respond for a particular patient, so it's trial-n-error till it's figured out. This is in addition to the plaquenil & prednisone. (PS. 5-10 mg is a very LOW dose prednisone, so I'm not surprised your disease is still making you miserable.)

Other things often contributing to our fatgiue - are you getting deep restorative sleep? If you're having trouble getting to sleep or staying asleep you might need some sleep medication. Or often they'll just use a sleep test to figure out the quality of our sleep. Sleep is often hindered while on higher amounts of prednisone.

Also, are you eating well? Lack of appetite/pain sometimes inhibits our eating - we need protein to heal.

If you get some relief from prednisone that means it's likely NOT fibromyalgia.
I believe you should be treated more aggressively for Lupus (or another auto-immune disease.) It takes many of us years for an official diagnosis, but our symptoms are treated as if we have it for long periods of time before dx.

You may want to consider a second opinion from a rheumy who works with Lupus as a main interest. Check www.lupus.org. find local chapter, then find which local rheumies work with them - those are the best bets in your area. Rheumies that only diagnose on bloodwork are old fashioned and/or ill informed, need to check the symptom list!

I remember those days of naps for lunch, I hope you feel better soonest!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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