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Systemic Lupus, ANA 1:5120, Denial!

Discussion in 'Introduce yourself' started by Pumakat, Jul 12, 2017.

  1. Pumakat

    Pumakat New Member

    Hello everyone!

    My name is Kat, I'm 30, happily married to my husband who suffers from ulcerative colitis and I have an amazing nine year old son.

    My story begins when I was much younger although I was only recently diagnosed. I have always had an aversion to the sun and have been accused of being a cave dweller for the greater portion of my life. I was never able to explain why the sun took so much out of me, at least until recently.

    Last summer, at 29, I started developing extreme pain in my left hand. I wasn't able to bend or move it but I hadn't injured it either. I spoke with my primary care physician about this. She ran a panel of labs on me, one of which happened to be the ANA titer. All tests came back negative except the ANA at a titer of 1:640. After significant research I realized that the results strongly indicated the possibility of an autoimmune disease. I was referred to a local rheumatologist who ran several specific tests, to include the ANA panel and this time, my results came back as a shockingly high 1:5120 homogenous pattern. It was around this time that my fatigue became incomprehensible. I could go to sleep at 800pm and sleep until 200pm the next day. It has gotten much worse since then. I chose to see a specialist in Philly who ended up diagnosing me with systemic lupus.

    My symptoms?
    -ANA 1:5120 Homogenous
    -Extreme Fatigue
    -Joint Pain in right hand
    -Hands swollen and become very hot with activity
    - Protein in Urine
    -Hair Loss
    -Dry coughing at night
    -Abnormal EKGs (ECG normal)
    -Dry Eyes/Vision significantly worse over past year
    -2 early miscarriages within past 2 years

    Prescribed Medications
    -Plaquenil *Not taking*
    -Prednisone *Not taking*

    I feel terrible all the time. I'm horribly tired and want so badly to feel normal again. The thing is? I'm stumbling between denial and anger. I found out that my grandma had lupus and died from the issues it caused. I was never close to her. What if this is something else? Is it possible to have an ANA this high and it be a fluke. I know I'm reaching. I don't want to believe that my body has Lupus. This past week I have had a low grade fever of 99.6. Google informed me that this is also a sign of an autoimmune disease. What if I was incorrectly diagnosed? Are these thoughts normal? Two years ago I was running half marathons and today I can't stop crying.

    I'm really wanting to connect with others who have gone through this or are going through it. I feel alone and completely incapable of accepting this diagnosis even though the signs are staring me in the face. I'm not taking Plaquenil and prednisone right now because prednisone makes me angry and made me put on a ton of weight last time and the Plaquenil gave me headaches.

    Thanks for reading my introduction.
  2. mark176

    mark176 Active Member


    A lot of the symptoms point to AI. However they can point to other things.

    Have u tried to reduce plaquenil dose? It is a very helpful pill. I used to get ear ringing with this in early days, not now the body got used to it.

    Has the imuran helped at all? How long have you been taking it?

    The stage u are going through with the denial i can link to. I was like that at start. Now though the pills have mostly controlled the problem my mind and body have calmed and i am quite accepting and live a relatively normal life. That only occurred once meds fully kicked in.

    Im on two antimalarials and that solves most problems.

    Kind regards
  3. x_claire_x

    x_claire_x Moderator

    Hello and Welcome Kat,

    Firstly, denial is normal, and after diagnosis it is an emotional rollercoaster; however, you also have had good Drs , it seems that have diagnosed you well.
    Plaquenil is the first drug of choice for its general lack of side eye test prior to commencing is a good idea as there is a very small risk of probs with that.

    I guess only you can decide what you are going to take, but please don't underestimate the damage SLE can do to your body and it's organs. Life expectancy has been greatly improved since these meds have been taken to treat Lupus and since the Drs are a little better at diagnosing earlier....some of them !!!

    Everything is very stressful when this disease is raging....and your anxiety about all of it will calm once you are feeling more human and living a more normal existence..... it can take a couple of years to get the meds tweaked correctly for your specific body/health.

    I feel better now (9 yrs post diagnosis) than I did for years ....glad you have found us, give yourself time to adjust and be kind to yourself.

    Take care..................Claire
  4. lazylegs

    lazylegs Moderator

    Welcome Pumakat!

    Questioning the diagnosis is not uncommon. I've known people having had Lupus several years still questioning if the doctor got it right. Sometimes it just takes time to accept the fact you have a chronic disease.

    It helps to communicate with others going through similar things as yourself. You don't feel quite as alone and they understand the abnormal fatigue and other symptoms that go along with it. It can help at home also. You can get your questions, fears and rants out here rather than at home. The more knowledge you have can be of benefit also. Check out our home page for reliable information

    Take care,
  5. Pumakat

    Pumakat New Member

    Hey Mark,

    Thanks for responding to my post. My first issue with the plaquenil is that I immediately noticed my vision become worse. My optometrist did some tests to ensure
    I didn't have any plaquenil deposits on the back of my eyes (which I didn't) but was informed of rare cases of plaquenil causing issues with vision with long-term use. I continued taking the medication but started developing pretty nasty headaches. I'll talk to my rheumatologist about decreasing the plaquenil dosage and see what he says.

    I think the Imuran is helping although I didn't think this was the case a couple weeks ago. At that time I suspected that it was the medication that was making me feel so terrible so I made a dumb decision to stop taking it for 3 days thinking that I would suddenly feel better (I realize that this was part of denial) and realized very quickly that the Imuran was actually helping because I felt 10x worse without it. I've been taking the Imuran for about 6 months now.

    I have been having anxiety and panic attacks since my diagnosis. Two of my panic attacks were so bad that I was rushed to the ER. I have found medications which have helped with this but I so desperately want my mind and body to be on the same wavelength. How long have you been diagnosed?
  6. Pumakat

    Pumakat New Member

    Hello Claire!

    Thank you for responding. I appreciate your sound advice. I actually spoke with someone earlier who emphasized the importance of taking the medication to ensure that I don't end up with permanent organ damage. As ridiculous as it sounds, I had considered these medications to be more for symptom relief than long-term prevention of organ damage. I suppose ultimately they serve both purposes but the realization of long-term prevention has helped me some when battling with my dislike in taking them.

    It is a sincere relief to be able to speak with others about this condition and I am so glad to hear that you have finally found a place where you are feeling much better now. This gives me hope. It's been really challenging recently and I have been dealing with a lot of anger regarding all of this. I will remember above all to make sure to be kind to myself. I know nothing can break me down more than my own mind.

    Thank you for your kind words and for the time you took in responding to my post. I will be sure to stay in touch through this forum and I might ask for some advice occasionally since you are much more versed than I :)
  7. Pumakat

    Pumakat New Member

    Hello Lazylegs! Thank you for taking time out of your day to respond to me :)

    What is interesting is that my Husband has Ulcerative Colitis and I helped him through some of the worst flares of his life over the past several years. Now that I have an autoimmune disease, I think we both feel sort of "talked out" about such topics. While Ulcerative Colitis and Lupus are both auto-immune diseases, they are also quite different in their own ways. For this reason I am so thankful to have found this forum so I can connect with those who are newly diagnosed like myself, and also those who have wrestled with it long enough to have some truly wonderful advice and tips.

    I anticipate being a member of this forum for a very long time and look forward to absorbing as much information as possible and maybe even sharing some along the way, too!

    Thanks again for your time and reassurance. This has certainly been an unexpected rollarcoaster.
  8. mark176

    mark176 Active Member


    When i first started started taking plaquenil I started getting funny things happening to the eyes. My rheumtologist took me off of it and I underwent extensive testing for eyes. I am now back on it. Toxicity is very rare and virtually unheard of in the 1st 5 years. I will list the tests I underwent

    Red Amsler grid
    White and red visual field test 24-2 and 10-2 (cant remember the exact numbers)

    I had each of these tests done and then after 9 months they were repeated and showed no changes. I am away that it can affect the eye muscles which causes focus problems. This is normally an issue with dosages over 200mg per day. I used to get this on 400mg per day and I thought it was toxicity which is why I was pulled off the medication until I collapsed!

    To solve this problem and also because plaquenil wasnt enough for me alone, my rheumy gives me 400mg plaquenil 5 times a week and 100mg mepacrine twice a week.
    I still get some focus problems, but no where near as bad as when I was on the 400mg. You may find on a low dose say 200mg 3 times a week it will give you benefits, but without the side effect of headache. Also, plaquenil is an immune modulator rather than immune suppressor. So it wont affect your resistance to disease.

    The comment you made about stopping meds and realising that they were working, been in that boat many times. Yes its surprising what the medications can stop. That effect on its own will give you evidence that suppression of your immune system is helping to make you feel better.

    I had a lot of anxiety when I was undergoing diagnosis, which took 6 months and I couldn't work out what was wrong with me. However, my mind stabilised once the physical problems stabilised. I now get bruising if I do too much and the condition is mostly, but not fully controlled with my medication. However, for more control I need stronger meds which I am trying to avoid for the minute unless the current ones stop working.

    I had a lot of travel vaccines around march 2015 which initially seemed to stir up the problem. Eventually after a summer full of problems I got to see my current rheumatologist in October 2015 and we started treatment thereafter. I had some mild problems before the vacines like the odd bit of muscle swelling every few months, but the vaccines pushed it over the edge.

    Hope that helps

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