Symptoms of Lupus

[blueinredohio]

I'm being tested for lupus. I would appreciate any help I could get with it as I know nothing about Lupus. In January of this year I got a rash(which lasted about a month) all over my torso. It didn't itch but when it started going away my skin peeled off like a sunburn. In April my face is pretty red and I'm having a lot of hair loss. Yesterday I got a rash on the back of my neck maybe in my scalp as I can't see it but my whole head itches. Could this be the start of Lupus. I also have a brother that was diagnosed with skin lupus. Thanks in advance for any information.

[Sneederbunk]

1. Listen to your doctor(s).

[marybourg]

2. Lupus is difficult to diagnose , complex

and variable. In addition, docs don't like to put the diagnosis "lupus" on anyone's records, because of later difficulty in obtaining insurance of various kinds. So diagnosis is often a journey. Symptoms, however, can be treated, even without a diagnosis.

After your tests are back, and without regard to the results, you should probably locate the best rheumatologist in your area and make an appointment. They are the best with treatments.

[blueinredohio]

3. Thank you marybourg for the information

I have been to a rheumatologist he said my ana tests came back elevated. Also did a bone scan and told me I have osteoporosis which I figured because my mother had it. So I said something about my back hurts in the same way hers did. He told me osteoporosis doesn't hurt. I know it does because my mother was not a complainer but after a while it was debilitating for her. But are what I described some of the symptoms?

[marybourg]

6. Could be, but could be any one of a number

of other things. I agree that osteoporosis can be painful. Is this the best rheumatologist in your area? Many of them are clueless.

[blueinredohio]

7. I don't know who would be best as I don't know anyone who goes to a rheumatologist.

[marybourg]

8. Access to a university medical center?

Large well-known hospital? Local branch of Lupus Foundation?

[blueinredohio]

9. I know nothing about Lupus. I didn't know there was a Lupus Foundation. I will look into that.

Thanks marybourg. Maybe someone there has a suggestion about a doctor in my area.

[marybourg]

10. Re: osteoporosis pain

There was just a study published about treatment for osteoporosis pain, therefore it must exist.

[NightWatcher]

4. Watch out, lupus never comes alone.

It usually comes with a host of other autoimmune diseases like myositis, mixed connective tissue diseases, and other unpleasant shit. Hit me with a DM if you have other questions or need advice.

[blueinredohio]

5. Thanks for the warning NightWatcher. Will let you know.

[Tucker08087]

11. Hi there! Sorry I'm late to discussion!

I have had Lupus for over 20 years. There are 2 types. One is the skin type, which I don’t have so can’t tell you too much specifically about that. I have the other kind, which is systemic (SLE). It is hard to diagnose, but the good news is that although there is no cure, there are very new medications that, if diagnosed and treated early enough, can stop the progression. Also, although when I was diagnosed, Lupus was pretty much a death sentence (I was given 5 years) it really is rarely the case, so don’t be afraid. Medicine has come a long way.
Now my SLE comes with pain, fatigue, and flu-like symptoms like fever, sore throat, etc. I’m now on a chemo maintenance program as well as prednisone and really a whole host of drugs to counteract symptoms. The initial symptoms were pain, vomiting, and extreme exhaustion. I also had a facial and neck rash. Also multiple miscarriages. I was in my 20s. In the last 10 years it got into my spinal cord (that’s part of the systemic issue, it invades your bodily systems) and I developed serious neurological issues including, but not limited to, massive seizures. This only comes with a small percentage of patients, so don’t worry. And keep in mind it took a long time for this to happen. The neurological part forced me to end my career, which still hurts, but I am healthier. Being on constant chemo and working in the public school system was a ticking time bomb that almost ended my life twice, and that was quite an eye opener as far as what is really important. In case you don’t know: it’s not your job, no matter how much of a difference you think you are making, and it’s definitely not money. And if you have kids (I have an adopted son) I’m saying this because I wish someone had said it to me before the doctor is the hospital told me I had 36 hours left with him. Once again, beat those odds so I’m hear to tell you!
As far as doctors, you need a rheumatologist, but one in a teaching hospital. Do NOT go to a small town rheumatologist. They will tell you that you are depressed, hormonal, flat-out crazy, drug-seeking, and/or have fibromyalgia (which is s gift horse- provides you with some meds, so take it, but keep looking if it appears to be the wrong diagnosis).
I know this was a lot. Too much. And I probably answered like 2 questions that you really had, so please feel free to ask!
Please, don’t be afraid. The worst thing is not knowing!