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meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 9/17/2008 4:33 PM (GMT -7)   
HEY all, I am not officially diagnosed with Lupus. At this stage it's 'undetermined'. I'm going to post this on both the Lupus and Crohn's board (I am diagnosed with Crohn's). I am unsure whether either of these problems are associated with these diseases.

My first issue is that I cannot shower even with lukewarm water without getting BEET RED knees, shoulders, chest and all over my face. I look really silly. The redness responds to pressure. Has anyone else had this? It's more of an annoyance than anything.

Second, if I get really cold my feet take on a bluish purple tint. I googled some images of Raynaud's and saw that it is a sort of extreme paleness before an intense blue color, so I'm not sure I have this? Could a milder form of Raynaud's look just like a bluish tint?

Third, is Seborrheic Dermatitis ever associated with Crohn's or Lupus? I know it's auto-immune but I'm trying to get a full picture of what's going on with me and why my immune system hates me. I was diagnosed with this irksome dermatitis a bit ago.

Thanks!

Post Edited (meowese) : 9/17/2008 5:36:42 PM (GMT-6)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/17/2008 4:47 PM (GMT -7)   
Hi Meow,

Long * sighhhhhhhh *

I'm so sorry you are having such a hard time. It really IS difficult to figure out what is causing what sometimes. Chron's and lupus do share some of the same "overlaping" conditions.

Do you have a positive ANA? if so, do you know the pattern? There is some other blood work that 'can' be pretty specific to lupus. There are some biopsies that ARE specific (like Kidney biopsy).

I also frequent the Chron's board as I am having problems that the GI doc is almost certain are chron's. I see that there are many members there who are concerned they may have lupus as an overlap.

One thing we really concentrate on here in Lupus Land . . . is treating symptoms. If your doctor is treating your symptoms, then the dx isn't so important. I know that is probably hard to hear . . . but it is helpful in taking a step forward.

I hope some of the others can give you more information.

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


meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 9/17/2008 4:52 PM (GMT -7)   
Thanks for your kind response AlwaysRosie!

I had two positive ANA tests in the past (before I was diagnosed with Crohn's and then once after) but when I went in for repeat testing last month to find out the pattern, it had disappeared (of course). I wasn't really given an explanation as to why it would come and go, but I assume it's because my Crohn's is in remission - Maybe?

I'm trying to treat all of my symptoms but sometimes after seeing so many doctors in different areas (derms, rheumies, gastros) I feel like no one understands my problems as a whole.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/17/2008 5:07 PM (GMT -7)   
Do your doctors share their lab reports, medical reports with each other? I have a primary care doctor that functions as the hub of my wheel of doctors. If I need a referral to a specialist, she sends me to one and she also gets a report from that specialist after I see them. So she has all the lab work and all the reports, or basically the full picture. It's a great help. Perhaps, if you don't have PCP you might think about finding someone who would do that for you.
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 9/18/2008 7:39 PM (GMT -7)   
I am bumping this up again mostly because of the heat rash after shower (despite lukewarm water). I am reading on another board that it is associated with Lupus sometimes... or possibly rosacea. The redness is on my neck and looks like a collared shirt (very crisp lines), and on my chest, all over my face. Just hoping someone knows something about this here. Thanks again!
Crohn's (diagnosed in 2006 and currently in remission), severe migraines, Seborrheic Derm., Hemolytic Uremic Syndrome (1994), chronic pain, ulcers/GERD and possibly Lupus. Medications: Nexium, Pentasa, Percocet and Vicodin as needed, Flintstone Vitamins (my favorite part!), calcium and magnesium supplements, vitamin D once weekly. I follow a low fiber, low residue diet.


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/20/2008 4:05 PM (GMT -7)   
one thing we realy concentrate on here in Lupus Land....is treating symptoms. said...
(replace this text with what was said)
Hallelujah.  I was thinking today that I don't care what they call it, just give me something for it.  I hope to get back some energy and less pain.  But that may not be possible and I can accept it.  Will see the rhemy next month, and maybe learn more.
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/20/2008 4:15 PM (GMT -7)   
meowese said...
Thanks for your kind response AlwaysRosie!

I had two positive ANA tests in the past (before I was diagnosed with Crohn's and then once after) but when I went in for repeat testing last month to find out the pattern, it had disappeared (of course). I wasn't really given an explanation as to why it would come and go, but I assume it's because my Crohn's is in remission - Maybe?

I'm trying to treat all of my symptoms but sometimes after seeing so many doctors in different areas (derms, rheumies, gastros) I feel like no one understands my problems as a whole.
I hope that you can find some answers soon.  Please share them if you can.,, It helps.  and share how you feel emotionally also as often as you can.  i know sometimes it is hard to do this.  It is hard for me too.  Money could not buy what this forum has given to me. 
Hester

Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/20/2008 5:32 PM (GMT -7)   
Meowese,
 
I get those red marks when I shower too!!!  I look like I've been peppered with something, but it's from the water coming out of the shower head, right!  I get that too, it's so weird...... I have a pretty strong intollerance to heat, so my showers are luke warm at best.  I don't know what to attribute it too.  I guess I have never tried to find out what it was because the marks go away about 10 minutes after my shower is done.  It's a mystery!
 
Ginny
 
 
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, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 9/20/2008 6:12 PM (GMT -7)   
Thanks again everyone. I am very happy to have found this board, Hester!

Ginny - sometimes mine last for an hour or more before going away!
Crohn's (diagnosed in 2006 and currently in remission), severe migraines, Seborrheic Derm., Hemolytic Uremic Syndrome (1994), chronic pain, ulcers/GERD and possibly Lupus. Medications: Nexium, Pentasa, Percocet and Vicodin as needed, Flintstone Vitamins (my favorite part!), calcium and magnesium supplements, vitamin D once weekly. I follow a low fiber, low residue diet.

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