View Full Version : Rheumy thinks I might have LUPUS, do you?

07-17-2009, 10:12 PM
HI all!

I'm so glad to have found a place for support. I've been sick for the past 4 years and no one has been able to figure it out. But now - Lupus is a possibility. Here's what I've had for symptoms and please tell me if this sounds like lupus to you. After all you are the experts - the doctors, I have found out....are not.

ANA has been 1:40 the last one was 1:160 not sure what this means, doc said mildly positive? Isn't something either positive or negative?
Tendonitis, muscle pain
Feet are horribly painful, plantar faciitis and heel tendonitis, muscles pains on the top of feet.
sores/ulcers/lesions in nose
waxing/waning hair loss (all over head not patches)
sometimes pains in joints
bad bouts of episcleritis

I take prednisone right now and have for 2 years. They just took me off plaquenil to see what happens.

I also have this telecgantaisia (can't spell it) on my face. Sometimes it's redder than others. Some docs think it's connected - others dismiss it as rosacea.

I would so appreciate your help. Iam desperate for a diagnosis so I can get proper treatment.
Thank you

07-18-2009, 05:48 AM
hi jewelz,

two years of searching for "what is wrong with your body" is a very frightening period of time. Lupus is so very individualized, and some people get immediate diagnosis, and then some people spend years searching before the diagnosis is made. It took over 10 years for my diagnosis, so i know what you are going through.

I was first diagnosed with fibromyalgia in 1996. Even though my ANA was positive and maintined a 1:1280 count, the symptoms did not manifest themselves for a diagnosis until October 2008.

I am sorry to hear that your dr. has taken you off plaquenil....this med helps so many people by reducing their symptoms. I take plaqnenil and methotrexate.

Your list of symptoms certainly sound like lupus, but they could also be indicative of other auto immune diseases....hopefully your dr. will be able to narrow down the possibilities, and make a clear diagnonsis. Have you also been tested for fibromyalgia (fms)? a lot of my small muscle pains (like what you are experiencing on the top of your feet) is related to the fms. There are some medications that can help with fms....it is common for fms to go along with lupus.

I am not the best person to explain the blood work results, but as i understand it, the 1:140 is a ratio measurement, so the lower the second number, indicates a larger number of antibodies to each count of blood. I know this is not a good explanation, and i know others will be along who can do a better job. Also, there have been several threads discussing these measurements, and you will find valuable information in these. Also, if you will look at the "stickys" at the beginning of each section, you will find even more information.

know that we are here, whenever you have any questions. I am sorry that you are dealing with this frustration and pain, but i am glad you found us....this is truly a caring and knowledgeable group of members from around the world.

best of luck to you, and we welcome you to our "family of the sky"

07-18-2009, 11:47 AM
Just wanted to add my "hello." Many of us have had your experience - years of feeling unwell, symptoms seemingly random and disconnected....sometimes it takes years, as Phyllis said, to put the puzzle together. One thing that helps is to keep a journal of your symptoms/ailments. Make a note not only of the symptom, like "rash," but also note where it is located, when it first appeared, when it went away (if it did), whether it was affected by anything (like sunlight)...etc.

Make sure to obtain copies of all of your labwork, etc. Your blood work may change over time, so it is good to have historical records.

Spend some time on the website. Read the stickies at the top of each topic in the forum. There is so much useful information posted here. Ask questions... we'll try to help.

Best of luck to you,


07-20-2009, 10:52 AM
Hi there,

As i,m not diagnosed yet,but i have informed myself quite a bit in the last 6 months,i will ask you this: What pattern is your positive ANA? This is kind of suggestive on what might going on .Although the patterns are just 75 per cent accurate in specific diseases,tells the docs where to go further.On the same hand have you had any ENA tests done at all?There are specific antibodyies anti RO and anti LA for Lupus, Scl 70 for scleroderma,Jo1 for myositis and so on.

07-20-2009, 08:34 PM
Welcome to the group. It sounds from you description you have Lupus. I am not a physician, but I have been educating myself on Lupus.
My name is Kim. I was diagnosed 5 years ago after suffering from massive edema and joint pain. I am now also diagnosed with Sjogen's Disease and Fibro.
The ANA test that you mentioned is a test for auto-antibodies and is positive in Lupus patients. It is the only positive indicator along with symptoms of Lupus.
A slide containing prepared cells is used. A drop of your blood is applied to the slide. If your cells bind to the cells on the slide, this is positive. The numbers indicate the amount of times the specimen is diluted to get a negative result. ANA can be positive in other diseases such as infections of the lungs or gastrointestinal tract, hormonal problems and in 5% of the population without any disease process it is positive.
I hope this helps you out.
Good luck to you and please keep in touch.

07-20-2009, 10:16 PM
thank you, everyone!

My pattern, I think, is speckeled.

I have edema too - no one knows where it comes from. Had the WORST bout of it just this weekend...it scared me. It comes and goes too - just weird. Docs look at me like I have a 3rd eyeball when I tell them about it.

Rheumy took me OFF plaquenil - wants to see what happens:huh:

I waiting for a call back about scheduling a biopsy of the nose sores. That should tell me something, RIGHT??

I've been so sick for so long....it hit me hard with an allergic reaction to penicillian. Docs say the reaction (which was actually serum sickness) set off a genetically predisposed to - auto-immune disease.

If this is Lupus - then a rheumy (who has since been replaced) kinda screwed me up worse as they had me on Humira and then Enbrel for over a year...thinking I had RA. I just got worse on the drugs. From what I've read Humira and Enbrel just make Lupus WORSE!:irked:

On a lighter note - you guys have the BEST smilies!

07-21-2009, 12:41 PM
Welcome to the site! Sorry to hear what you are and have gone through but you have found the right site for love, understanding, answers and support.

Wishin you health and sending love!

Angel Oliver
07-21-2009, 02:48 PM
Welcome to the site and i sure hope your doctors help you figure this out soon.I took ill in 2004, had different diagnosis so far....still being tested every 6 weeks for Lupus.Hope i dont have it n you too,but when you look at symptoms here.....bet your like me n think....yes its Lupus! The doc told me it was before bloods were back,then he changed his mind,so very frustrating.Alls i know is i feel sick with so many symptoms......so...goodluck and know you are not alone.We will all help you.