To the Lupus sufferers, please tell me what you think.

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Regular Member

Date Joined Jun 2007
Total Posts : 339
   Posted 4/30/2009 9:44 PM (GMT -6)   
Hello all,
I have visited this board previously with a few questions, and was told I don't have Lupus.
However I do have Lymes disease, and my doctor had me tested for Lupus. When she got the results, she said it's mild, not really anything, just a mild skin Lupus. I took that with a grin of salt, as she did as well.
Well, as times goes by, I feel  Lupus symptoms are growing. I used to get really bad rashes on my arms in the summer, used to be very sensative to the sun, had major body aches and pains, especially in the areas where I've injured the area, like my ankles and knees. I've had wrist pain, but thought it was because of typing on my Laptop while sitting on the couch, like I'm doing right now. I get massive headaches, will urinate a lot, especially at ight, find it hard to control my  urgency to go, have high blood pressure issues, and severly dry skin, mouth, hair, and...that's it for the dryness. I don't have a Malar rash, I have tons of energy at all times of the day and night, have no body aches and pains for a while, and can excercise with no issues. As of late, I've been suffering from bowel and digestive issues, almost like I have a candida overgrowth. Can  Lupus cause bowel issues? Do any of the suffers find that when you eat high sugar or carby foods you get tired or sleepy? I actually think I hve a host of things going on, but the Lupus scares me the most because my mother, grandmother and uncle died from kidney failure, something I'm trying to stay away from, But Lupus loves to destroy kidneys. Also, I see this weird kind of dark patch of ski  on the top of my forehead that seemed scaly, yet smooth, and I recently I lost hair on one side of the left side of my forehead. It seems to have come out in a day.  I don't know, it's just weird, and scary, ad if you ca offer some insight, that would be wonderful. I see the Dr. in 2 weeks. Thank you.
Brainfog is cruel.

Regular Member

Date Joined Jun 2007
Total Posts : 339
   Posted 4/30/2009 9:46 PM (GMT -6)   
Oh, and this is the main one. I get these little dark purple bruises from nowhere on my left arm, seemingly in the same area. It could be anything. But they appeared yesterday after I ate high carbs, after doing high protein for 2 weeks. The food even gave me an awful headache.
Brainfog is cruel.

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 4/30/2009 10:20 PM (GMT -6)   
Hi Jen, I cetainly hope no one here told you that you don't have lupus. No one here is a dr. and are not qualified to give you a diagnosis.
It's not unusal to have your symptoms to progress or even cross over to other auto immune diseases, It's even very possible to go through very long periods of time with no symptoms at all. That's why it's so hard and takes so long to make a diagnosis.
Are you on steroids? that was one thing that could cause bruising. You have asked a lot of very good questions and hopfully others can give you some advice. Also take pics of some of the bruising so you can show them to the dr. write down all you questions so you don't forget anything. The thinning hair can be from Lupus or from steroids.
I look forward to hearing what others say and keep us informed.
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
Bear ye one another's burdens
Galatians 6:2 KJV


Regular Member

Date Joined Jun 2007
Total Posts : 339
   Posted 4/30/2009 10:40 PM (GMT -6)   
Thank you so much. I can't wait to find out something. I'm not on steroids, just vitamins. I was def. told I don't have Lupus here. I'll have to find the post.
Brainfog is cruel.

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 5/1/2009 5:33 PM (GMT -6)   
Hey Jenisis! I have bowel problems too. I am not sure if it is caused from meds or lupus. pretty sure its lupus considing all my meds have been changed several times and still have it. not kidding, about 10 minutes after eating, I have a bowel movement! and this is everytime I eat....not just occasionaly. Sometimes even a snack.. Also have jelly like substance in some bowel movements. I too have the urgency to urinate. I don't have the luxery of getting the signal and being able to hold it. When the urge comes, I better go quick. Been told that it is inflamtion that causes both of these problems. The only time I didnt have it was on high doses of pred, but since that is being tapered down, its back. So far, I havent been able to find anything to help with these issues...
about urinating at night...have you had your kidneys checked recently? That was one of my main symptoms I was having before I was diagnosed with Nephritus. I would get up 4-6 times during the night to go, the other sypmtom was/is blood in urine. When I would urinte it would look like tea or sometimes a little lighter than coke. If not, I would def get them check especially with the family history. If it is caught early, it is usually very managable. Do you know if there is protein in your urine? The good thing is researchers have come very far on kidney problems and can be treated more effeciatnly than the past. Cellcept is a drug a lot of doctors are using nowadays rather than the toxic cytoxan! Most people using cellcept have few side effects if any. I was put on cellcept and prednisone and have had great results. I would def tell your doctor about your night issues. There are many causes of nocturia
I am sorry you where told you deffinatly didnt have lupus here. I have found that everyone on here is extremly helpful and encouraging! I hope you get all your questions answered and let us know what you find out when you go to the doc!!! 



21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

Regular Member

Date Joined Oct 2007
Total Posts : 323
   Posted 5/1/2009 8:52 PM (GMT -6)   
Hi Jen, I also have the dry skin, my rhumy put me on amlactin lotion it does help. It's good that you see your doc. soon hopefully he can find an answer for you. Take Care
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     

Regular Member

Date Joined Mar 2009
Total Posts : 98
   Posted 5/6/2009 6:40 AM (GMT -6)   
Hi Jenisis, Gosh you have a lot symptoms. I know how hard it is to wait for a proper diagnosis, but proper is the key word I believe, in order to receive good treatment. I would document every symptom for weeks and share the symptoms with a doctor I trust. Yes my bladder gets inflamed and I wet myself. My colon gets hit and I have mucus and blood at times. My skin gets rashes that even ooze at times I hope you get the right care. God bless, Tammy.
I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 

Regular Member

Date Joined Feb 2006
Total Posts : 186
   Posted 5/7/2009 11:01 AM (GMT -6)   

I saw several references to bladder problems in the postings - 

I too had frequency issues, greatly interfering with life.  I ignored it for years, focusing on the Lupus issues first.  I finally couldn't stand it any longer and went to my PCP.  He referred me to a new Urologist that looked like he was about 12years old!!  At first, I was really skeptical, but it didn't take long for him to jump on board and get me diagnosed properly almost immediately.  He took a peek inside my bladder and ruled out cancer but did diagnose I.C. (Interstitial Cystitis), which is an irritation/inflammation of the vessels.  Some doctors believe it is a vasculitis of the bladder, some believe that it is common with Lupus/autoimmune diseases.  The main thing is to avoid 'triggers' like Vit C/acidic things, and to also recieve ongoing care from a qualified Urologist who knows about I.C.  Aspartame really sends me to the bathroom, as does Gatorade. 

Anyone out there with Lupus and bladder problems need to research solutions - don't 'put up' with bladder issues, there are solutions out there!!

Hope this helped all of you that posted.




"There is a little naughty monkey in all of us!"
Mononucleosis / Chronic Fatigue Syndrome 1991, Depression,Endometriosis 1994,Costochondritis,Stage Two Dysplasia 1994,Asthma 1995,Tonsilitus 1999,Lupus Jan 2004,Migraines, Interstitial Cystitis  2005, GI Bleed/problems 2007.
Rx:Hydroxycloroquine (Plaquenil) 200mg 2x/day,Hydroxyzine HCL (Antihistamine) 25mg 1-2 pills at night,Albuterol Inhaler  taken as needed, Acidophilus tablets 1billion CFU, Cabergoline 1x/wk, Valtrex 1gm/daily, Vit D 2,000 IU daily, Calcium/magnesium supplement

Regular Member

Date Joined Jun 2007
Total Posts : 339
   Posted 5/7/2009 6:43 PM (GMT -6)   
Hello all,
I'm sorry it's taken so long for me to get back to you. I just haven't been well. Thank you so much for all of your extremely helpful comments. I see we're all diff., and I need to get thoroughy tested to be properly diagnosed. I'm seeing my Dr., and getting a plehora of test on Monday. I actually can't wait to be poked, lol. I'll keep you all abreast on what's going on. Lots of love, and well wishes. Be well.
Brainfog is cruel.

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