Welp- We Think I Have Lupus

[tpapik]

After a month wait to a wonderful Rheumotology doctor out of University Hospitals. I had a bunch of blood draws on Friday. I just got a message from her; stating this "By the looks of our lab results- I am strongly suggesting you have lupus; and this may be the answer to all the problems you have been having over the last 6 months" here were my symptoms

POTS (obviously)

Back aches - and I do not mean Low back pain. but full out "my spine feels like its inflamed"

pain - achiness in my dominant hand and wrist (tolerable)

pain/achiness in my hips (tolerable)

low grade fevers for unknown reasons . .

flu-like symptoms

swollen lymph nodes in my neck

sore throats

blotchy areas on my skin that didn't itch - they just ..... come and go. especially in heat.

lots of weight loss- IBS symptoms.

Fatigue

I am awaiting a return call from her. As all I know is from my message she gave me, I want to know more obviously and she wants to start me on Plaquenil.

Honestly I am not surprised by the diagnosis. Even though I do not have the typical Rash. Or massive joint pain from the beginning (though I notice more now) . This all started right after pregnancy- Hence the start of the flare where most autoimmune happens.

I just want some input from other Lupus members.

Did you have weight loss as your symptoms prior to your diagnosis no matter what you ate.

did you have the typical "rash" - because I did not.

Doctor wants my to be on Plaquenil - how long did it take to help subside symptoms when you started it (specifically I need my weight back)

The office is closed now - that I got the message from - so im sitting here kind of clueless.

Thanks

Tiffany

[westernmass]

I don't have lupus, but have always personally suspected it. Do you have a positive ANA? What was it? What other tests have you had to determine lupus? The Rheumy I saw a year ago didn't take me seriously so I've wondered for awhile if I should see another. I haven't dealt with weightloss, but have dealt with lots of GI issues.

[ramakentesh]

I have ankylosing spondylitis and 'autoimmune' pots and I get or have all of those symptoms - particularly the lower back pain and migratory peripheral pain.

had a hla-b27 test?

[issie]

I had high ds-DNA which was indicative of lupus at one point. I'm working on autoimmune things with diet, supplements and meds. Doc. had suggest the plaquenil but holding off on that at this point as the other ways we are addressing things are seeming to be helping. I too have issues with all things in your list and other autoimmune related things. I think many of us, with time, will find that autoimmune issues are a big player with us.

Issie

[Psalm 23]

Hi,

I have a lupus diagnosis and am presently on plaquenil. I was first diagnosed with lupus by a Rheumotologist in 1999. At that time I was not interested in taking any medication I just wanted a diagnosis that explained all the symtoms I had been afficted with for the past nine years. During my third pregnancy (1990) I developed flu -like symptoms and oral lesions. After the pregnancy I never quite got over those problems. Then in 1992 I ended up with aseptic meningitis ( thought to be viral, CSF protein 112 ) . After that I developed a malar rash and many other problems. I think that marked the beginning of my autonomic dysfunction.

I have a very complicated medical history and to make a long story short I continued to accumulate more problems. In 2005 they all caught up with me and I lost the ability to work. I was referred back and forth to a number of different doctors and was diagnosed with CFS, Fibromyalgia and POTS ( I shoud have been diagnosed in 2001. If only a TTT had been done after a syncapal episode at work ).

In 2008 I was referred to a different Rheumotologist for re-evaluation ( the earlier one had retired ). He diagnosed me with degenerative disk disease and Raynauds and re-diagnosed me with lupus and fibromyalgia.The lupus diagnosis was based on a positive ANA history, malar rash, photosensitivity, oral lesions, joint pain, history of pleuracy and other rashes. He strongly encouraged me to take Plaquenil. He said being on it would help protect my kidney. I only have one because one of them was removed along with a large tumor in 1995. So I decided to follow his advice and start taking Plaquenil.

After about six weeks into it I noticed the horrible rash on my scalp had vanished, other rashes had lessened and there was improvement in joint pain. I was prescribed 300 mg daily. I have been seeing an Opthamologist every six months for eye exams but was advised last week that once a year is now acceptable.

I have been told that lupus may be the cause of my autonomic neuropathy and POTS. I hope this information is useful and you get the help and answers you need. It can be a very long and frustrating journey I know but hang in there.

Janet

[Psalm 23]

Hi Tiffany,

I just realized you had asked about weight loss as it related to lupus. I did not have any weight loss issues until 2010 at which time I started having increasing symptoms of delayed gastric emtying which was confirmed by a gastric empty scan.

Im so sorry about the loss of your daughter Nora Renee. I cant imagine how difficult it must be for you and your family. I know its not the same but I lost my first at 11 weeks and was crushed. My heart goes out to you. Im praying peace, comfort and healing for you.

Janet