View Full Version : Doctor hesitates to say it's Lupus

04-14-2004, 05:52 AM
Hello. My name is Shawnee and I hope someone here can help me. I am 31 yrs old and have crohn's disease. Been receiving remicade treatments off and on for a couple of years. I stopped the remicade in January of this year in hopes of trying to have a baby. The crohn's flared up this month and I had to get the remicade treatment once again.
Previously, I had tested "positive" or with high limits for ANA and Anti-ds DNA but was told it could be due to the remicade.
Since the remicade was out of my system by the time I had my last blood test (prior to this last remicade infusion) I requested the tests again.
Yesterday, I say my rheumotologist and he says the ANA is very elevated. And, if lupus were diagnosed on blood tests alone, the tests are positive. I asked him if crohns could cause the ANA to be elevated and he said not that elevated.
However, he hesitates to put a "label" on me just yet.
He has started me on a low dose of methotrexate in the meanwhile and we will wait and see how I do.
I have a maternal aunt with lupus and she is in a wheelchair and doing poorly. Although, like me, she has a strong will and maintains a positive outlook.
I am confused, to say the least.
I wonder how can we know for sure if I have lupus or not? I also have the joint pains. But, I was diagnosed with osteonecrosis caused by years of prednisone treatments.

Any input from someone who has been there will help and is most appreciated.

Thank you.

04-21-2004, 06:41 PM
Shawnee -

Just wanted to say hi and that I'm thinking of you. I don't have personal experience with Crohn's, but have known some people that have, and know that it can be a very rough disease to have. You can look into all the "symptoms" for Systemic Lupus - I think Saysusie has posted a list on other threads, but everyone seems to react to the disease differently. I just hope you have a great Rheumatologist that can help you with a correct diagnosis. I know that the waiting for diagnosis to find out what was wrong with me was the worst part. Once you know what you are facing, it's easier to seek out information and fight it! I'm sorry that your Aunt is not doing well with Lupus. My sister has a pretty mild case of it, and I have kidney involvement, but am adamently working on getting it into remission. I think you're right - a strong will and persistent attitude goes a long way!

Best wishes and take care,


04-22-2004, 10:19 AM
Thank you for your reply, Missy. It is just helpful to know that there are people out there who can relate and I believe in the power of positive thinking . So, keep those good vibes headed my way and I will do the same.

Battered, but NOT beaten!!

04-24-2004, 07:12 AM
Hi Shawnee;
Crohn's disease causes inflammation in the small intestine and usually occurs in the lower part of the small intestine (the ileum), but it can also affect any part of the digestive tract, from the mouth to the anus. It is an inflammatory bowel disease and can be difficult to diagnose because its symptoms are like other intestinal disorders (like Irritable Bowel Syndrome). No one truly knows what causes Crohn's but many doctors believe that the body's immune system reacts to a virus or bacterium by causing ongoing inflammation in the intestine.
The most common complication of Crohn's is blockage of the intestine. The disease may also cuase sores, or ulcers, that tunnel through the affected area into surrounding tissues such as the bladder, vagina, or skin. Other complications include arthritis, skin problems, inflammation in the eyes or mouth, kidney stones, gallstones or other diseases of the liver and biliary system. Some of these problems resovle during treatment, but some must be treated separately. Treatment depends on the location and severity of the disease. Most people are treated with drugs containing mesalamine (such as Sulfasalazine) to help control the inflammation. Some treatments include corticosteroids and immunosuppressant drugs. Antibiotics are used to treat bacterial overgrowth in the intestine and antidiarrheal agents are sometimes used.
Research has shown that patients with Crohn's usually have no impariment during the course of pregnancy and delivery. Even so, it is wise to discuss your plans with your doctor. The good news is that most children born to women with Crohn's are unaffected.
I hope that this information has been helpful to you and I wish you the best of luck!

04-26-2004, 02:19 PM
Hi all. My name is Jennifer. I live in Nebraska and I'm new here. I was diagnosed with Lupus last week after app 3 years of looking for reasons for my symptoms.

Shawnee, I can empathize with you. I'm 34 years old, so we are close to the same age and I also want to tell you about a patient I used to have (I'm a PA) She had irritable bowel for years and was on repeated doses of steroids. Was finally diagnosed with ulcerative colitis(similar to crohns in many). She was seen for pre-op for colonoscopy and her blood was found to be very thin......unusual in a person not on blood thinners. So further blood work was done and she was found to have significantly elevated ana and was immediately diagnosed with lupus (because of other positive tests as well). I have moved away, so don't get to be in touch with her any more, plus I only got to see her a couple of times as she mainly followed with gastroenterology clinic for her intestinal problems.

I guess my point is that the intestinal problems you are having could certainly be related to a lupus diagnosis.
Hang in there. THis looks like a good place to hang your hat if you're looking for good information......

04-27-2004, 07:48 AM
Hello Jennifer:
Welcome to our forum! I know what you mean about waiting three years for a diagnosis. That part, alone, can cause of lot of unwanted stress :roll:
I hope that our community here can provide you with information and support. We are also here to listen to you and to give you as much help as you need.
Again - Welcome! And, thank you!

Peace and Blessings
Saysusie :P

05-05-2004, 10:40 AM
What a great group you all are! Thank you for the information. I am really just trying to keep focused on the positive and staying well.

I feel very well when I am on Remicade treatments. But, within 7-8 weeks of the treatment, I start to suffer from horrible pain in my joints. Since Crohns and Lupus symptoms are similair in many ways--who knows which is the problem.

What confuses me is that they say Remicade can cause a "lupus like syndrome" and, if you develope lupus symptoms during treatment, you should stop treatments. I think my doc feels the benefits of remicade in my case far outweigh the risks. I am seeing a GI May 14 and plan to address this with him.

I have had crohns' since my late teens--had an ileostomy for 4 years ( removed lots of colon and connected small bowel to remaining colon) But, I was able to have that reversed and now have my "normal" plumbing back.

My maternal aunt has both types of lupus. She was diagnosed when she was my age and when I hear that I may have lupus, I cant help but feel fearful. Even though I am a "positive" person...I am only human, too. The unknown is always scarey, eh?

I wish I could just get a definate answer so I knew. But, for now, I will just keep focusing on what is good and take the days as they come. (or, at least I will keep telling myself that until I believe it!)


05-05-2004, 10:42 AM

What were your symptoms?

05-05-2004, 02:01 PM
Hi, Shawnee:
My symptoms are varied. I get physically ill when I'm in the sun for very long. (Nausea and diarrhea). I have had the butterfly rash about 3 times. I have pain in my wrists and my left leg. I walk with a limp most of the time now.

During January and February I was really weak and in a lot of pain. My wrists would swell and get red. I was also very fatigued at that time. Thankfully, that has gone by the wayside, for the most part.

How are you feeling today?

05-18-2004, 08:17 AM
Other than this headache from HELL!!! :evil: , I am just FABULOUS!

Argh. I feel like my head is going to explode. I had to come to work today. I work with my family and if I am not here..it leaves a load on everyone else. I feel guilty for being sick!

I am waiting for results from blood work done on Friday. (fingers crossed!)

05-19-2004, 07:42 AM
AH YES.....The infamous LUPUS MIGRAINE!!! (AKA: The Headache From Hell) :lol:
We know that one all too well!!!
Let us know how the test result were. Take care of that headache!!

Peace and Blessings

05-06-2005, 07:48 PM
I have been having symptoms for over a year now and noone has made a diagnosis - though one doctor has suggested that I may have lupus. My specific tests for lupus have not been high though my ANA has been and my thyroid has been shown to have been attacked by my immune system.

I have joint pain, particularly in my wrists, hips, fingers, and ankles. I have pins/needle pains that get worse and get better. I have muscle spasms in my stomach. I have a pain that radiates from the base of my head to the top of my head. I have pain in my ear. I have had several odd rashes but not the butterfly rash that appears to be associated with lupus. I have bouts of fatique that I cannot associate to anything other than the amount of rest that I get. I need more sleep than I ever remember. My joints in my hands become red after doing physical activity that stresses the hands/fingers. I have pain in my chest as though I have done some major physical activity when I haven't. I coughed up mucus for about 2 weeks and felt much better after that. I have an irregular heartbeat (rapid) and have been put on Toprol though after a million tests, my heart shows to be in good shape. Those are the main symptoms.

I went to doctors for 8 months before getting referred to a rheumatologist. I went to a doctor (though considered a quack) that proved that I had very high levels of Ebstein Barr though not active. She put me on a very, very high dose of anti-viral medication and I have actually been somewhat better though most doctors will say that anti-virals can't combat the virus. My blood tests show that they have made a difference.

I have two grey looking areas on my leg that feels like a bruise but doesn't look like one. Has anyone experienced such a thing with lupus? I've also had small sores on my thighs that at first I thought were ingrown hairs but after poking and time I realized they weren't. Most of them have gone away and pretty much haven't scarred. Has anyone experienced this?

I don't know what to think. After the initial rheumatologist visit at Emory in Atlanta, I went for a second opinion with a rheumatologist that has been practicing for 30 years and he doesn't feel that it's lupus. I am so confused and tired of the whole thing.

I am currently on Amitriptylene (prescribed by my GP) and Toprol (100MG daily). I am not feeling very well and sick of not knowing.

Any suggestions, thoughts?