rashes always present?....

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KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 12/11/2007 7:47 AM (GMT -7)   
Hello.
I was wondering with Lupus are rashes always present...What I trying to say is, can you have lupus without rashes?
I have many, many Lupus symtpoms but no rashes....sometimes I get these  round pink spots on my body that are very warm to touch, they don't last very long....maybe 20 minutes or so. Other than that, I don't get any rashes.
Do all people with Lupus get a rash?
 
KaAl

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/11/2007 9:28 AM (GMT -7)   
When I was first diagnosed, I didn't have any rashes at all. That was one reason why my diagnosis took so long.  I didn't the "normal' skin involvement.  But as the years progressed, I ended up having just a little bit of skin involvement.  I get the butterfly rash across my cheeks only if I'm in a pretty good flare up, otherwise I don't have it.  I have other marks on my skin called Livido Reticularis. Those marks are caused by vasculitis. They're small and not very visible. 
 
So, no, not all people get rashes, but many of us get some sort of rash or marks caused by other issues.
 
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

33 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, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 12/11/2007 3:31 PM (GMT -7)   
In a word, no.  I have never had a rash of any kind but I still have a bad case of lupus.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, 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
 
 


KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 12/11/2007 3:49 PM (GMT -7)   

Thanks for the reply.....

Bill, if you don't mind me asking, was it hard for you to get a dx? Also, what led you to your diagnosis?

 

Thanks!

kaAl


KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 12/11/2007 3:50 PM (GMT -7)   
Bill, I forgot to ask, how long have you had Lupus?

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 12/11/2007 9:04 PM (GMT -7)   
It is debatable how long I have had lupus.  First early warning was in Sep 2004 when my platelet count dropped.  I had low platelets and mild anemia for at least 15 years before that but was in excellent health with no symptoms of anything.  Then it dropped further, still no symptoms, and my internist sent me to a hematologist.  He tested me multiple times for 7 months and then speculated that I might have lupus....he had ruled out almost everything else.  2 months later I had my first flares which resembled gout (swelling in a big toe) briefly and then the swelling, redness and pain spread to both feet.  The same symptoms spread to my arms/wrists/hands and I had joint pain...all my joints.  about 2 months later my rheumy diagnosed lupus and then 2 months after that mixed connective tissue disease (lupus, scleroderma and polymyositis).
 
My case is not typical and it was the worst case of mctd that any of the doctors had ever seen.  Lupus attacked my kidneys and entire digestive tract.  Some of my problems could have been caused by any of the diseases but lupus was a major factor and 2 years ago I almost died.  Polymyositis overwhelmed my liver and I had hepatitis and lost 40 lbs of muscle.  I started 2006 as a quadriplegic who could not swallow.
 
Today I did an hour of tai chi and in the next week I intend to downhill ski again. 
 
Most people with lupus or even mctd do not have a case like mine.  Lupus can be very difficult to diagnose and the symptoms can vary and come and go.  Don't be afraid to get a second or even third opinion.  I had 3 rheumys treating me at the same time and even now have 2...a senior one and a local one who work together very well.
 
Since 2005 I have not had a single flare or relapse which is not typical.  Nothing about my case was but you will learn that every case is different.  Don't know where you live but if there is a LFA support group in your area I suggest that you get in contact and attend their gatherings.  I have been active in a lupus group and a myositis group and it has been a big help. You will find people who have had your experience and/or can help you through the tough times.
 
Lupus is called the disease with a 1000 faces and it is.  What I have is even more complex as it includes 3 diseases and also manifests itself very differently in all cases.  Diagnosis is often the sum of several symptoms and tests and is not always easy to get.  Look at the Lupus Foundation site and there will be a list of common symtpoms that can help you and your doctor in diagnosis.  I keep a log of all health issues in an excel spreadsheet so I have a record of everything and can compile a report to give to a doctor.
 
Good luck and I hope you do not have lupus but if you do be aggressive in getting a diagnosis and treatment. 
 
Bill
 
 
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, 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
 
 


KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 12/12/2007 5:03 PM (GMT -7)   
Hi bill, I would like to first thank you for taking the time out to reply to me....I appreciate it.
I'm sorry to hear about all the ruff times you had with your health, but it is great that you are able to live life the best you can. I admire that! Even though you have a terrible diesease or should I say diseases, you don't let it get you down... BRAVO!!!

KaAl

KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 12/12/2007 5:04 PM (GMT -7)   
Oh, and I asked my rheumi today about rashes...and yup, you were right, not all people with Lupus get rashes.....what a mysterious disease!

KaAl
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