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Thats IT?!

345 Views 7 Replies 5 Participants Last post by  LolaLola
Hello everyone!

Ive just been to the rheumy. I am puzzled. Really puzzled. He is a nice guy no doubt but....So! He says to me its lupus, he is sure of that. I must say the only tests done are ANA ( positive, no titre given), RF is negative and Anti CCP antibodies is also negative, and usual anaemia.

Is it that simple?! Ive seen people on this site struggling to get a d/x and mine gets popped out in a second! He didnt asked further tests either, just one - ENA for lupus.
Treatement changed to slow decrease of predisone to 10mg/day and 2 methotrexate/week.
Also he said I could eat whatever I want no restrictions, no ideas...

I want to see other doctors..not that Im fghting the idea of lupus but can it be so easy to diagnose?!
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Hi Virginia,

I always say there is nothing wrong with getting a second opinion, even a third.

I know that Lupus is diagnosed based on blood work and symptoms your experiencing.

Some people are diagnosed based on symptoms alone when nothing shows in the bloods. I think this is called sero negative Lupus.

Whatever the case may be, why not go get a second opinion? I am the type of person that it took 4 doctors to tell me I had Lupus before I really believed it.
Hello Virginia

I am sure that a lot of people are relatively quickly diagnosed and many are easily treated too - they just don't post here because they have no problems and don't need support.
However a surprising number of people are actually misdiagnosed, 5% according to a lupologist at a major tertiary lupus treatment centre. It's a serious matter being diagnosed with SLE because of the heavy implications it has on being able to get insurance of all sorts, and it's also hard to get it wiped from the record.
Many doctors would diagnose UCTD when the case does not " fulfill ACR criteria or definitions for any other rheumatic disease ". (Dr Wallace).

See what the ENA panel shows up. I find it surprising this has not already been done. Presumably he has done anti ds DNA and tested urine. How about complements? Negative RF and CCP are more significant for an RA diagnosis and their absence is not important for a lupus diagnosis. I wonder why there's no ANA titre. The higher the titre the more likely it is due to lupus.

I'd be asking him why he isn't prescribing an antimalarial if he is sure you have an autoimmune connective tissue disease.
I might be getting a second opinion for that reason alone even if the ENA panel does show up something interesting.

There are no particular dietary recommendations for lupus except to eat a fresh healthy diet to promote general good health eliminating items that can increase inflammation and introducing some that can help reduce it and thus possibly ease certain symptoms.

Bye for now
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I can understand your concern over the speed of diagnosis (and skipping right past Plaquenil as a treatment option and going straight to methotrexate). Most rheumy's in the states would want the ENA run already before diagnosing any particular autoimmune disease.

That said, a speedy diagnosis is possible as that is what happened to me. Within 2-3 weeks of complaining of symptoms, I was diagnosed. Prior to that I had only seen a doctor for a facial rash in the previous 9 months or so...

You do not have to have anything other than a positive ANA combined with symptoms consistent for lupus to get a lupus diagnosis though. So even if nothing else comes back positive on the ENA, a lupus diagnosis may still be warranted depending on the bigger picture you present in your symptoms and all the bloodwork. Another blood test that may be run should you get a second opinion would be for the anti-phospholipid antibodies (anti cardiolipin, lupus anticoagulant). These can also lend weight toward a lupus diagnosis.
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Thank you so much!

All the information here is so very helpful! Thanks again!

Tmr I am going to have all blood work done and urine tested also ( I had urine tested 2 months ago( it was ok )and only ANA and RF and Anti CCp thats all I have done). The beauty of living in Islamabad is that I can ask all tests to be done even if they are not required by my Ill just do that..

By tmr evening some of the questions will be answered.

About my symptoms what can I say - I used to have joint pains ( all joints), finger swelling and myalgia for almost 2 months. Now since medication started --joint pain, finger swelling dissapeared, only myalgia remained in my shouders and hips...Oh yes, and as I said, anaemia, low red cells, ok white cells and ok platelets....

Sorry to write too much again!!!!!! But there is only one rheumy here in Islamabad, until i reach UK next month, this site is the best thing for all my questions...

Hugs to all of u..!
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Dear Virginia,
No one here minds how much you write. It is good to have you here. When you come back will you be in the UK permanently?
x Lola
Lets see what the future holds for me..!

Got some tests back - basically C1 estrase and two others lupus tests cannot be done in Pakistan so C3 and C4 were done and are just fine, plus my aneamia is only mild now with WBC at 6,100 and platelets at 185,000. And yeah, I was so happy to see my liver got much better so very good news for me..!

Rest of tests coming during the month...until then - waiting..

Dear LolaLola, Ill be back in London only for Xmas then Ill be back at work in January in Islamabad. I cant wait to wonder and see friends but also terrified if its gonna be cold!!:rotfl:
Ive read in other posts about your daughter, I really hope she is feeling better! Me in the mean time Im enjoying few pain free days !

Clare, I am very very thankful for all the information you provided me. I actually wrote down all tests you told me about in the post and demanded them at the clinic.
Also I asked the dr why not Plaquenil and he said he wants to see how I go on Unitrexate as I responded well, he said he might change it after 6 months or so..

Thanks again for all the information and support...Im plain speechless about how I feel about finding this site!
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Virginia, It is very kind of you to be concerned about Immi, my Daughter.
She is not as ill as she was a year ago, but still gets terribly tired, sometimes she is asleep so much I hardly see her. If she goes to a normal thing like an evening out she is worn out for days. She is able to eat better than she was, which helps. I am usually in London just before Christmas and I have to say it is almost always cold! I hope you have a great time though.
x Lola
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