[Spudster]

My name is Carolyn, I am 40, have 4 children and am on my own now with them. I am just finishing up full time study for a Diploma in Nursing and I live in Queensland, Australia. I have only just been diagnosed with mild Lupus in mid August so am currently trying to find out all I can and know this Lupus inside out. I was in the Chat room last night and it was suggested to me by a very helpful member that I should post and maybe get some info and opinions here. So far my tests have shown as follows:

Pos ANA
Mild titre of 160
Phosphate, WCC and Lymphocytes are all mildly elevated
CCP is negative
Rheumatoid Factor varies week to week from 27 to 48 (rarely normal)
Vasculitis screen was negative
Legionella pheumophila was borderline
ESR varies also up to 45 (rarely normal)
Low Calcium
High Chol

Have since done a urine test and is positive for Leukocytes and protein but otherwise normal.

So as for physical symptoms I have excrutiating pain in my upper left hypochondriac region radiating through to my back and down to my pelvis on really bad days. My ultrasounds have all been normal except for an enlarged lymph node on the neck of my pancreas which was confirmed by CT scan. Pain in right elbow (now gone but lasted almost 12 months), left wrist. Chest pain (but this may be radiating from the abdo pain), hair loss (male pattern), headaches (can last up to 3 or 4 weeks), now an then small areas of petechae, numbing of my hands during the night, wake up and they hurt.

My GP sent me to a med spec at the hospital and she diagnosed mild lupus but told me that it was senseless to send me to a rhuematologist as he would just laugh and send me away as my chems are so mild.

One thing I find that is strange is that several years ago my old GP used to test my immune system every month and used to tell me to take extra care of myself as my tests were always very low. So how can one have an overactive immunesystem if it was always consistently low???

Maybe am in denial or maybe am just praying to find out it is something else. I dont know how to plan my life now, I dont know if this "thing" will stay mild and manageable or will it just start eating me up.

There is probably a lot I have forgotten to mention but just yell at me and I will provide the info. And thanks to all who have already been supportive to me. It feels strange to find such comfort among total strangers and feel that you have just been adopted by a new family. xoxo :blush:

 

[Clare.T]

A warm welcome to the forum Carolyn

I'm sorry abut your diagnosis, assuming it is correct. I must say we hate the term mild lupus here. It is often used by doctors to be reassuring that there is no major organ involvement, but it is too often used to trivialise one's concerns and when it means so we are not going to bother to treat it, that is very wrong indeed. If it means we are going to wait until it gets worse that is ignorant negligence in my view

The sooner lupus is treated the better, with whatever it takes to get the disease under control minimise suffering and maximise quality of life.

Referral to a rheumatologist is without doubt the next step. The more the rheumy knows about autoimmune connective tissue diseases the better.

Diagnosis is made as much from symptoms as blood work which is why an experienced clinician's opinion is so important. Blood tests do not always reflect disease severity.

I am not sure what immune tests means exactly but one common test is "complement". Complement proteins are a crucial element of increased immune system activity for any reason. They increase to combat threats to the body whether from outside or inside and get used up in the process. So low complements are common in active disease. They are one of the few possible indices of disease activity and sometimes for measuring therapeutic success and are a significant criterion for diagnosis.
Chronic deficiencies either acquired or inherited can lead to lupus like illness.

The complement tests should be done as part of routine diagnostic testing.
You told me in chat that the further antibody tests showed no abnormalities. The "lupus anticoagulant" clotting tests and anticardiolipins tests should be done.

Lupus is best thought of as a malfunction of the immune system rather than overactivity. Some people with lupus are more prone to infections than well people but not all. One of the many mysteries of this most complicated disease, although if a person is on immunosupressants naturally they are more likely.

Try not to fear the future until you know what there really is to fear. People who are living very well with their lupus do not post on forums. As it is there are many examples of people here who face appalling difficulties but lead very full lives with fulfilled goals. The main thing at this point is to get the diagnosis confirmed and start getting disease modifying treatment as well as relief for symptoms.
I get the impression that all medical services are even poorer in your part of Oz than elsewhere. Good lupus specialists are few and far between worldwide.

Do your best to access the best possible care. You could post in the find a doctor section. One of our regular and very well informed Australian members, Lily, is away at the moment. We do have many more Aussie members who look in but don't post.

I am glad you found your way here. There's a wealth of information and understanding. I think you will find it a great help.

Bye for now
Clare

 

[lazylegs]

Hi Carolyn,

Welcome to the site. I am happy to see you have already been in the chat room. I hope to see so in there soon.

Nobody can predict how Lupus will affect you. I was seriously ill in the beginning until I found the right medications for me. Once things were in control I went back to work and raised a family. There were many ups and downs along the way naturally. Hopefully you will get the help you need so you don't have to make too many adjustments to your life.

Take care,
Lazylegs