Need advice....

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dunny2
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Date Joined Jan 2007
Total Posts : 3200
   Posted 11/13/2008 2:41 PM (GMT -7)   
Hi, I usually post on the crohns board, but I've recently had tests done for lupus. Originally, they thought it was drug induced,
but with ANA titer levels of 1.640 +, they decided to run a double stranded DNA test. The result came back as very high, but
the nurse said it still wasn't definitive... So I really don't understand what that means.

My joints hurt so badly at the moment, that at times I have e real problem walking. My wrists hurt too. I have no energy and feel
very down... As far as I have read, all that seems to be missing, is the butterfly rash, although I do get photo sensitivity.

I'm seeing my doc on Tuesday, but I wondered if you guys might be able to shed some light on this for me...
I would really love some help... Many thanks...
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


dunny2
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Date Joined Jan 2007
Total Posts : 3200
   Posted 11/13/2008 2:47 PM (GMT -7)   
I forgot to add, that I've been spilling blood and protein in my urine for a long time now, with no answers. I wondered if this
might also tie in with the lupus DX
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 11/13/2008 3:58 PM (GMT -7)   
Vicky,
 
Your kidney problems are probably proteinuria and lupus can cause that.  See a nephrologist and you might have a kidney biopsy to determine the level of damage.  Usually this condition is easily treatable with an ace inhibitor like lisinopril but it is not a condition you should ignore.
 
I have it and it has been under control for 3 years.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 11/13/2008 4:00 PM (GMT -7)   
Explanation of ana levels..
 
 
Most of us with lupus have higer titers.  Mine has returned to normal levels and stayed there for 3 years.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/13/2008 4:02 PM (GMT -7)   
Thanks Bill, they have mentioned a kidney biopsy in the past, but it was never followed up. I guess now with the other symptoms
it will be more likely to happen... Mmmmm nice!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 11/13/2008 5:05 PM (GMT -7)   
Dunny, how long ago did you stop Remicade? I stopped Remicade 1 year and 3 months ago. Then I went on humira and stopped that 11.5 months ago. At that time they told me the ds-DNA antibodies would go away in 4-6 months. Well, they didn't and now it is a firm lupus diagnosis. I would never post this next statement on the Crohn's forum because of the alarm it could cause. After monitoring the CD forum for so many years, and reading people's stories about Remicade induced lupus antibodies, I believe that in the future it will be found that the anti-TNFs cause lupus much more freqently than first thought. There are an awful lot of us that have had this happen.

When I first started with the painful joints, then the inflamed joints, fever, the grinding fatigue, mouth sores and hair loss, my rheumy put me on prednisone. It helped immensely. Then he tapered me off while adding Plaquenil. The Plaquenil took a while to kick in but I can now tell it helps. My last antibody titer was still high so he just upped the Plaquenil. I will say that the symptoms are now tolerable.


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) : 11/13/2008 5:39:35 PM (GMT-7)


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/13/2008 6:34 PM (GMT -7)   
Hi Ides, I stopped remi about 4years ago, due to drug induced lupus. I started Humira a year ago, and like you was told to
stop. The Titer levels have remained high and now the confirmation of the DNA test has about settled it....

Like you I don't say whats really causing my lupus on the crohns forum, for the same reasons as you give, but I have to admit,
I want to shout about it. I'm kinda bitter about things. First I have my pancreas badly scarred and damaged by 6mp, and now
lupus. I wish I had been given more information about these drugs at the time, so maybe I may have made a different judgement
as to what I put in my body. Now we don't have a chance to reverse anything. I some times feel at 57 I'm getting too old to shake
things off like I used to, and I have to admit I wish I was back to just having crohns to worry about. Oh well, whats done is done!!

I'm pleased that you're getting some relief from the fatigue and joint pain. I hope when I see the doc on Tuesday they can give me
something to give me some relief too...
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 11/13/2008 7:05 PM (GMT -7)   
Vicky, I 'm about your age - I'm 58. I totally understand being somewhat bitter. I am very bitter today. I just learned that my mostly annoying, but sometimes terrifying, visual disturbances might be a brain issue caused by lupus. I go for a brain MRI in early December. I want us all to have a break from the continuing crap we have to deal with all the time.
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.
 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/13/2008 7:17 PM (GMT -7)   
I'm so sorry Ides. I really hope that your MRI is clear. Bless your heart, and there was I moaning....
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/13/2008 7:56 PM (GMT -7)   
From what I read through, it seems that a lot of things can cause us to develop ds-dna and the ds-dna can be active toward different things, like nerves. Whether all of it falls under the heading "Lupus", I don't know. I still can't get them to test mine. They tested my single stranded dna which is useless according to my rheumie because lots of people have it.

These tests also are probably hard to read. I had P-ANCA, but when they tried to confirm and get more info through slit lamp, my ANA was so high it interfered with it. So I guess these things are hard to read.

I hope you get clarity soon. For me, Lupus is not an answer, but just shorthand. I believe there are underlying disease causes for autoimmunity, and through Mayo am getting a lot of help there. But this is just my belief. There are also hereditary factors, but some of us get it and some don't, so there must be a trigger. And it seems once you get one ai problem, you start getting a bunch more, so they need to look at that too.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/14/2008 1:32 AM (GMT -7)   
((((((((( Vicky)))))))) (((((((( Ides ))))))))

I just want to scream for you!! AHHHHHHHHHH!!!! I wouldn't be afraid of causing alarm in the CD forum. Knowledge is power and the info you have to share just might help someone make some more educated decision on whether or not to start on Remi. *sigh* Sometimes you just can't win, it seems.

I wish I had some great advice . . . .but I'm speechless. I just feel so bad that you both deal with the ravages of Crohn's and now the Lupus issues. Its just too much.

Just wanted to pop in this topic and give you both a hug.

Hot tea for all!!

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


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/14/2008 6:20 AM (GMT -7)   
Dear Rosie, scream away girl!!! BUT don't forget yourself. You are struggling with the same stuff, but here you are
worrying for us.... This is so typical of all you guys LOL
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/14/2008 6:51 AM (GMT -7)   
Vicky . . .

I am very mildly affected. I have had some extended periods of time with debilitating pain . . . but have been doing really well for a nice long time. I now respect the regimen of alternating rest and activity. I have bowed down to the god's of pacing. I used to push my way thru pain and fatigue . . . and it didn't serve me well at all. Now that I rest as needed . . . and even before needed . . . I am having much smaller and shorter issues.

That being said . . . I might just be in at a time when I would have been better anyway . . . who knows . . . I just like to think I have 'some' modicum of control over it all. My Crohn's issues have been extremely mild since I stopped taking ibuprofen. I was, for years, taking at least 9 a day!!

Anyway . . . thanks for the encouragement. Hadn't thought about it that way.

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


Trying2BFree
Regular Member


Date Joined Oct 2005
Total Posts : 251
   Posted 11/14/2008 10:44 AM (GMT -7)   

This thread is really interesting to me.  I was taken off Remicade mainly due to my ANA rising.  It did go back down after several months.  Now I'm on Humira.  My Rheumy decided last week to rerun all my labs to see if any of the anitbodies are creeping up again.  I should find out next week.  The Humira is working for most of my joint pain but I'm still battling the fatigue/fevers/malaise.

I hope you get some answers Vicky.  This stuff is never cut and dry unfortunately.


Jeannie 
SLE diagnosis 10/05 now changed to RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin ER 1500mg (PCOS); Loestrin BCPs (Endo); Methotrexate 15mg (RA); Metanx 5mg (RA); Orencia 750mgs (RA); Lunesta 2mg (as needed); Prevacid


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/14/2008 8:17 PM (GMT -7)   
I hope you get some good answers too Jeannie.... Good luck.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekl

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.

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