Need some advice, 1:640 mixed pattern.

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I am new to this, and have recently been diagnosed with lupus. I think Im either in shock or denial as my experience with rhumie was not positive. I attended my first appt with rhumie expecting that I may have mild arthrits due to years of playing sports to be told i have Lupus and am going to die. This was done within a 15 min consult. I have two young children and have been emotionally unable to cope since then. Im not sure that I even have lupus. My symptoms include

1. mild hand pain
2. cold fingers (occasionally) but not to the degree, that most other people post
3. occasional headache (who doesnt)
4. Positive ANA 1:640 speckled and homogenous
5. some other joint pain (have played sports for years and had a numner of injuries that required surgery) pain or stiffness goes pretty quickly after getting up.

I dont experience hair loss or have never had a rash. I do however have endomitriosis, which i was diagnosed with when I was 16, but it doesnt bother me anywhere near as much as it used to. I have 2 boys 7 and 9 and no miscarriages. I dont suffer from fatigue very often, when I do it is not debillitating, Im not bed ridden, I just feel like a busy mum of 2 boys. I am now 35 and work in a highly stressfull drug and alcohol counselling service. Stress seems to be my biggest problem and the associated anxiety.
All other test have come back normal no kidney problems, lung or heart problems. Negative RA factor. Have been put on plaquenil. Ii went from feeling pretty healthy with a little pain, to after beeing on meds to sick, lost weight, ringing in ears, forgetful and generally feel horrible as soon as I started meds.

I feel very scared from diagnosis and dont know what to do, any suggestions?


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  1. rob's Avatar
    Hi Linda,

    I'm Rob, and I'm a Moderator here. You may want to consider posting this information in the "New Members-Introduce Yourself" forum. That forum is seen by every person who comes to the site, and you will get many more responses there than you will here with a Blog entry. People have to actively look for a person's blog, but the public areas like the one I mentioned are seen by all.

    You know, I was diagnosed with Systemic Lupus, in 2004, and I too, am going to die, but not until I am at least 100 years old! Lupus is NOT a death sentence. Did your rheumo actually tell you you were going to die? If he did, he is as wrong as wrong can be. My mother was diagnosed with Lupus over 20 years ago, and she is now 73 and doing just fine.

    Lupus is indeed a serious disease, and you will need to make some adjustments to your life in order to properly manage your symptoms, but there is nothing in any medical manual that says Lupus is an automatic end. The vast majority of us live long, fulfilling lives despite the disease.

    How long have you been on Plaquenil? It can take anywhere from 3 to 6 months to start working. If you've just started it, I would suggest you keep on it and be as patient as you can, as the drug does work well for most people, and it's basically the best med you can be on for Lupus. It sounds like you have the typical symptoms going on. It's not surprising that you don't have a rash. I have never had the telltale "butterfly" rash on my face, and I only get a mild rash on my legs from time to time. My usual symptoms are much like yours. Brain fog, joint pain, and fatigue are the big ones for me.

    I can imagine how stressful your job is, as I have an older sister in the same business. One of the worst things for causing a Lupus flare up is stress. You have to reduce stress whenever possible, but it can be a difficult task. One thing you can do right away is avoid the sun. UV radiation will cause a Lupus flare up without fail. A good hat and proper sunscreen are a must, as well as a light long sleeve shirt.

    The good news for you is the fact that there is no kidney involvement or any effects on major organs. And you have a diagnosis and are on the proper meds. Also, you are seeking the support and advice of others. The more you know about this disease, the less scary it will be. Knowing about your condition will make you a good advocate for yourself when visiting your various Dr.'s and specialists. You are on the right track, and are doing all the right things at this point. Also, if you have doubts about the diagnosis, or you are not confident of your rheumo's abilities, it's good to seek out a second opinion.

    I hope my words bring you some hope and help with your fear. If you ever just need to talk, I'm here everyday. Welcome to our group!

  2. bindi's Avatar
    Thankyou Rob for your kind words.

    It has been an extremley emotional few weeks. So its nice to have some positive reinforcement.
    I have had some blood results come back during the week, but Im not sure what they really mean. my ENA panel has come back negative, DS-DNA is negative, Sed Rate is negative as is CRP within normal range. I have asked my GP to send me to another rhumie for second opinion, but have to wait for atleast 6 months to get into a good one.

    I'm not wanting to go back and see the original dr that diagnosed me with SLE as she stated I would have only 3-10 years to live. As much as I have been trying, Im finding it really hard to get past that statement, even though I believe its not true. Its a shame that my first experience with a specialist has been such a negative one. I have had to stop taking the plaquenil, as it was making me too sick. I actuallly started having hallucinations. I still feel really lost and not sure what to do. I guess im still trying to make sense of it all.

    Talk to you again soon.

  3. rob's Avatar

    It's so good to hear from you. You are very wise to go for a second opinion. I read over your blog again, and your latest post, just to be sure I didn't miss something. With the information you have given about your current condition, I am going to tell you that the doctor who told you that you have 3 to 10 years left, is absolutley full of shit. Sorry for the language, but what that Dr./specialist did to you is completely wrong, and frankly unforgivable.

    Only a person with serious, and I mean very serious major organ involvement and damage would ever be told they have a limited number of years left, and even then, the prospects of recovery are still good enough that it would be an issue that would not even be talked about until the end was inevitable. When I say serious, I'm talking kidney/liver/heart failure, in the hospital, and comatose. People who have systemic Lupus have a very low mortality rate, and that Dr. should be fired for doing possible psychological harm to you. It's outrageous.

    I have fairly serious MS as well as Systemic Lupus, and all my Dr.'s say that I will maybe, maybe have 5 to 10 years knocked off the top end of my life, which means that statistics say that instead of living to 85, I might only make it to 80, or 75. I have the two most serious autoimmune disorders known to modern medicine, and my Dr.'s are frankly unconcerned about my lifespan, because the overwhelming evidence says it's not an issue.

    Anyway, I just want you to know that what you have been told is wrong, and although you should be concerned and seek treatment, that life estimate given to you is pure bull.