Diagnosis - it's lupus

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Date Joined Feb 2009
Total Posts : 58
   Posted 4/23/2009 11:49 AM (GMT -6)   
Just got back from my (rather brief) rheumy appointment. She just came right out with it - didn't really tell me much about the results that had come back, even though I asked, just that I had all the inflamation markers of lupus and that in combination with my current symptoms and medical history led them to the diagnosis. She said there were no signs of any organ involvement, and they think I have a milder form. I haven't had a urine test yet. They will now write to my GP and I have to make an appointment within two weeks to see my GP to start me on Plaquenil. I'm in shock, feel a bit emotional. Happy that I know what's wrong with me and that I can start getting some treatment, but kind of shocked all the same.

Regular Member

Date Joined Oct 2007
Total Posts : 323
   Posted 4/23/2009 2:03 PM (GMT -6)   
Hi alimOnkey, I'm glad you got your dignosis, no more being in limbo. I am sorry it is lupus, at least they think it is a mild form that in it self should be good news... the plaquenil will start working, it will take time but you will start feeling better. Take Care
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     

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Date Joined Oct 2004
Total Posts : 2244
   Posted 4/23/2009 4:47 PM (GMT -6)   
I am sorry you got a dx of lupus but at least you know what you are up against now. It may take a couple of months for the plaquenil to fully kick in, I pray it works well for you. I wonder why your rheumy is sending you to your GP for plaquenil?? It is important to have a baseline opthamology exam and a test called a visual field test as one of the extremely rare side effects from plaquenil affects the eyes. It is very rare and with normal eye exams by an opthamologist not an optometrist the side effect would show up before any damage occurs.

I know it's a shock right now and be prepared to go through waves of emotion but remember you are part of a great support group, we are here for you if you have questions or just need to vent. Take care
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

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Date Joined Jul 2007
Total Posts : 1048
   Posted 4/23/2009 8:32 PM (GMT -6)   
It's a weird feeling isn't it? Relief at knowing you're not crazy and horror at the thought of an incurable, chronic illness. I hope it remains mild and you do well on plaquenil. Judy

Regular Member

Date Joined Feb 2009
Total Posts : 58
   Posted 4/24/2009 1:35 AM (GMT -6)   
I'm in the UK so our medical system is different. GPs look after long term care, I will only see the rhumey for check ups once every six months in the first instance unless my GP thinks I have significant new symptoms in which case he will refer me sooner. My GP will order the vision tests and urine tests when I go before I start my medication.

I'm just so glad I was slap bang in the middle of a skin flare - I get great big red blotches like strawberry marks all over my chest and neck, and I had two lesions on my neck, they look a little like hives only they're thicker and they leave a purple scar or white stretch mark like scar that takes a few months to disappear. As soon as I walked in she just said based on the way you are presenting today and your medical history, and all the inflamation markers in your blood, you have lupus.

Thanks everyone for the words of encouragement, it really helps to know I'm not alone. This last few months I really felt so dreadful and literally like I was going crazy at times.

Regular Member

Date Joined Aug 2007
Total Posts : 206
   Posted 4/24/2009 6:19 PM (GMT -6)   
For me, the waves of emotion part didn't start until I actually started having a flare after my diagnosis. One day I was diagnosed with Lupus and having no problems with it, not really feeling it to be the truth, and the next day my body was giving me a burning in hell feeling. It can be really hard to deal with sometimes, but my rheumy suggested seeking therapy for the emotional part of Lupus no more than 2 years after diagnosis. I'm currently doing that, and find it to be a great deal of help to know that there are ways to help yourself, even when doctors, sometimes can't help you.
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis

Regular Member

Date Joined Oct 2007
Total Posts : 185
   Posted 4/24/2009 10:22 PM (GMT -6)   
That sounds just about like what my Dr. said to me... I have a milder form... Lupus affects my joints, eye on an everyday level....but I've never had any organ involvement.....I'm sure happy about that....
I couldn't take plaquneil.... It made me claw my face and my tongue swell up....
good luck...
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