Hi I’m new here from across the pond.: Hi I’ve been... - LUPUS UK

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Hi I’m new here from across the pond.

sbkris1 profile image
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Hi I’ve been reading many of your posts and they have been so encouraging! Thank you.

I’ve been struggling with ill health for quite a few years now.

Recently diagnosed with hashimotos and chronic lymphocytic leukemia. My oncologist ordered new tests and ANA ENA came back positive. RNA positive and DS dna neg. The appointment with the rheumatologist isn’t till August. Wondering what those results are indicative of. Muscle pain, stroke like episode 5 yrs ago and severe fatigue are my main symptoms.

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sbkris1
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miccika1 profile image
miccika1

Rna positive? Are u sure you got that right? Is there some other name next to it?

sbkris1 profile image
sbkris1 in reply to miccika1

Thanks for catching that! Not RNA...test result was positive for Rnp antibodies (5.5).

miccika1 profile image
miccika1 in reply to sbkris1

You will he diagnosed with mixed connective tissue disease (MCTD). You do not have lupus, but the treatment is the same, according to your symptoms (hydroxycloroqinin, prednisone for mild symptoms, immunosupressants if organs such as lungs are involved...) The prognosis is somewhat different thou. MCTD should be relatively stable, compared to lupus where you have cases of remission and really bad cases of "nothing works". The organs you want to follow/check are lungs and heart. There is a lung function test that you should do (spirometry is part of the test...) . Kidneys, for example, usually don't get involved w MCTD, as they might in lupus nephritis. Make sure that you at minimum walk 30min-1h and do light aerobic excercise each day. This is super important for MCTD.

Just read u don't have an appointment until August! I would suggest you ask your primary care physician or your oncologist who ordered the test for at least hydroxycloroqinin starting dose of 200mg (regular dose is 400) as that's a mild medication that will for sure help you before August. Im pretty sure they could prescribe it after seeing your labs. It takes time for this medication to start working so the sooner you start the sooner you will get some relief. Just make sure u take it w food. It could take a couple of months to start working although some people see difference in 2 weeks...

sbkris1 profile image
sbkris1 in reply to miccika1

Thank you so much for your reply! I’ve been ‘dr googling’ possibilities and MCTD was definitely something I was wondering about. Is it the RNP antibodies that point in that direction? Now wondering how I could have all of these diseases. Hashi’s, MCTD and Chronic lymphocytic leukemia. Is that really possible? Interesting about the exercise... when I was exercising heavily I felt tons better. Again, I really appreciate your reply. Thank you!⛹️‍♀️💕

miccika1 profile image
miccika1 in reply to sbkris1

Yes. RNP antibodies in the absence of other ones being positive is specific for MCTD. And yes we are allowed to have more than one disease 😀. It's not uncommon for a person suseptible to autoimmunity to develop more than one of autoimmune diseases. As long as you are sure in your other diseases (having autoantibodies for hashimoto... Im not too familiar with CLL so can't say anything about that). Good luck and hope you will get proper treatment to get better asap. Keep excercising, what it does it pushes lymphatic system stuff out of the system. There is no other way to move lymphatic stuff except muscles physically moving it, so please keep that in mind.

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