Just diagnosed with lupus, my 3rd autoimmune disease - introducing myself

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Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7149
 		   Posted Yesterday 12:55 PM (GMT -6)   
Hi everyone!
 
I know that some of you have seen me respond to posts on this forum occasionally. I started following this forum 3 years ago when anti-dsDNA antibodies were found in my blood. At that time I was on Remicade to treat Crohn's and spondyloarthropathy [SpA] with enthesitis associated with Crohn's [what a mouthful!] about 35% of people getting Remicade develop anti-dsDNA antibodies but never have lupus symptoms. These antibodies clear when the person stops the drug. At the time the antibodies were found I had fever, fatigue, joint pain. This quickly resolved and I continued on Remicade until last August.
 
Three months ago I began running a low grade fever and had a severe flare enthesitis in multiple places [elbows, knees, Achilles, all fingers, plantar fascia]. My rheumy felt this was just that a flare of the Anhylosing Spondylitis [AS]. I had been "upgraded" from SpA to AS when my sacroiliac joint became inflamed which is the hallmark symptom of AS when combined with my other symptoms and physical findings.
 
Last month I was still running a daily fever and had crushing fatigue. It feels like trying to walk through neck deep snow all the time. My fingers became very swollen and inflamed and extremely painful. I started losing hair, large ulcer on the roof of my mouth, and this itchy rash across the small of my back and on my chest. My rheumy ran more tests. When I saw him this past Friday, he told me that I have lupus. I once again had anti-dsDNA antibodies in my blood and my C3 complement is in the toilet - very low. Since I have been off the Remicade for 9 months, this is no longer drug induced but outright lupus.
 
I was stunned by the news. I usually can handle these medical road bumps but I think the crushing fatigue and constant fever has worn me down. I am having a hard time with this latest diagnosis.
 
I started on Prednisone and am tapering down. This morning I once again awoke with a fever and that darn fatigue is back. My rheumy's office called to check on me and I gave them the news. He is supposed to call me back. I assume he will have me bump the prednisone back up.
 
That's about it. I wanted to introduce myself because I know I will have questions in the future.
Ides

Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 

Post Edited (Ides) : 6/19/2008 12:59:05 PM (GMT-6)

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
 		   Posted Yesterday 7:29 PM (GMT -6)   
Hi Ides,
 
So sorry to hear about this new dx.  It is a shocker when you get it.  But sure does help to know what is causing all the fatigue, pain, etc. 
 
Don't be in a rush to get off the prednisone.  If it works to keep you feeling better, then stay on it.  Going up and down and up and down on it will only make your body more suseptable to flare ups.  Finding the perfect dose - as low as possible to keep the symptoms away - is the trick.
 
Actually, being on predinsone will help your chron's too!  You might find that a lot of your symptoms go away if you stay on prednisone.  Your AS might respond really well to it also. It's a great medication if you need it.  But we all understand the negative side effects too. 
 
I was tested for AS a couple of years ago.  I was having HORRIBLE sacroiliiac joint pain.  The tests came back negative for the antibodies, and a bone scan diagnosed me with Sacroiliitis (inflammation of the SI joint).  I haven't had a flare up of it for over a year now.  Thank goodness.  The pain is enough to make me mental!!!  I'm sure you know what it's like!!  do you get really bad neck pain with your AS? 
 
I'm glad you touched base with us Ides.  You're in good company as you well know!!
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7149
 		   Posted Yesterday 9:44 PM (GMT -6)   
ginny - What is your rheumatologist saying about the sacroiliitis? That is the hallmark sign of AS regardless of your HLA B27 status. I'm glad that it hasn't flared up of late! I don't have neck pain but I have extensive shoulder, knee, Achilles, and finger involvement from the AS.

Thanks for the warm welcome!
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 

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AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
 		   Posted Today 1:06 AM (GMT -6)   
(((((( Ides ))))))))

I'm glad you've started a topic to introduce yourself. I'm sorry you are still feeling so punk. I was hoping the prednisone would get things stabilized. Well . . . maybe it did and you just need to be on a higher dose for a while.

Ginny has dealt with the extremes of this disease and has some great knowledge in dealing with it. I'm glad she was able to reply to your post.

Glad to have you her at the Lupus forum . . . but SO sorry you need to be here.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
 		   Posted Today 9:23 AM (GMT -6)   
Ides, are you serious?  I feel sick to my stomach right now.  I have just recovered from some wicked shoulder pain that was diagnosed as bicep tendonitis.  But it came on so fast and with little reason.  The same time as my neck issues, which were diagnosed as arthritis.  Right now, as we speak, I have terrible pain in my left heal.  I can hardly walk some mornings when I get up.  It takes some walking around for an hour or so for the pain to go away.  Again, no idea why this is happening.
 
My rheumy suspected AS and had me tested, but when it came back negative for the antibodies she didn't pursue it. I know a person can still have AS even with a negative test result.  I guess it's diagnosed by symptoms in that case isn't it?
 
I'll do some more research and keep an eye on what's going on here.  Thank you for your input on this.
 
Good to have you here!!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
 		   Posted Today 11:40 AM (GMT -6)   
Ginny . . .

The heal pain (is it worst when you first get up?) can be plantar fasciatis. It is really common in lupus. The immune system attacks the plantar fascia tendons. I hobbled around for a couple of years.

I SO hope you don't have AS . . . but your post is really scary sis.

Wow Ides . . . you may have helped Ginny get a proper dx !!! I think it is so great how much we move forward by reading and posting.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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