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Limited Systemic Sclerosis or Lupus?

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#1 StarStacee



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Posted 31 August 2015 - 07:00 AM

Hello everyone, 

Last year at this time my GP finally referred me to a rheum at my request after I showed her a list of symptoms that have happened to me over the past ten years or so.  I queried had I ever been tested for lupus and she ordered ANA test.  The test came back positive 1:1280 Centromere pattern.  I went to the rheum who then ran further tests including ENA.  Result showed positive centromere autoantibodies (I think that's how you say it) and Anti Ro SSA positive.  I do not know the titres for these.  They also ran other tests.  I have mild lymphopenia and anemia and my C3 is 0.89 (bottom end of normal) and C4 is mildly low at 0.15.  My ESR is 2 (normal).  I am Rheumatoid Factor NEGATIVE.    I have had ECG and PFT both of which were okay.  Other symptoms are:

  • Frequent sores on the roof of my mouth (for no reason), mouth ulcers (for no reason) and in my nose
  • Frequent bouts of unsettled stomach with diarrhea which has been investigated with scope and nothing to be found, IBS also
  • Mild dry skin rash on my neck which never goes away
  • Palpitations
  • Mild chest pains daily and sometimes I feel a stabbing pain in my chest and have to stop breathing until it passes.
  • Shaky brain - like my brain is vibrating at times.
  • CONSTANT headaches
  • Dry eyes which causes severe pain at times
  • Joint pain and soft tissue pain (could be attributed to mechanical problems only - I've had 2 hip replacements)
  • Frequent twitching of muscles in arms, fingers and legs
  • Increased hair loss
  • Extreme tiredness - EXHAUSTION!
  • Numb hands, feet especially when laying down.
  • Red rash across nose (my rheum calls it malar rash)
  • Feels like something is stuck in my throat when I swallow
  • Speech difficulties
  • Poor concentration and memory
  • Ever since I can remember, I have had a skin disorder which they have diagnosed as Pityriasis Lichenoides Chronica through a biopsy. So, any time I had problems with my skin, I just thought it was this. 

I have had MRI and SPECT which show no abnormalities.


I am 39 years old and really think that I have LUPUS. My rheum has told me that immunologically I have Limited Systemic Sclerosis, but on paper so far it is just UCTD.  I am currently taking:


Diclofenac Sodium

Pregabalin ( I know this can cause headaches and twitching, but these symptoms I had when I was taking amitryptiline as well)

Vitamin D (my levels are 34)

Paracetamol (as much as I can take!)

Plaquenil (on month 5 and no improvement to pain levels or fatigue)



There's probably more stuff I can't remember.  I'm looking for advice.  What do you all think?  I really feel that it is Lupus.  Plaquenil is not working.  Any advice is gratefully received.  


Thank you

#2 Shelley Ensz

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Posted 31 August 2015 - 11:22 AM

Hi StarStacee,


Welcome to Sclero Forums. I'm sorry you have concerns about lupus or possible scleroderma.  As it happens, we are not doctors so we cannot diagnose anyone, of course. Anticentromere and Ro/SSA antibodies can occur in both lupus and scleroderma, and other autoimmune diseases, so they do not rule out lupus. Plaquenil is typically helpful for both lupus and scleroderma and other autoimmune diseases. If it's not helpful for you after a reasonable trial, then you should discuss possible discontinuation with your rheumatologist.


If you doubt your diagnosis, then we always recommend getting a second opinion. Since you are not suffering any specific symptoms of scleroderma, such as tight skin or pulmonary fibrosis, then you may want to consult another lupus expert.  Try to find one with more education and experience than your current doctor, so that you can be more confident in their analysis.  You may also want to see our resources on Difficult Diagnosis.


Good luck to you in getting it all sorted out!



Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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#3 Joelf


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Posted 02 September 2015 - 12:18 AM

Hi Starstacee,


Welcome to these forums!!


I'm sorry that you have had such unpleasant symptoms and worrying test results. As Shelley has advised, I'm afraid it's impossible for us to diagnose you, not least because autoimmune problems are very complex and affect all sufferers differently.


I've included a links to our medical pages on Systemic Lupus Erythematosus and Antibodies  which I hope you'll find helpful and informative.


Kind regards,

Jo Frowde
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#4 StarStacee



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Posted 03 September 2015 - 08:23 AM

Thank you for your message. I am getting a new rheum by default as he is leaving hospital, so I will get a second opinion. Thanks for your advice.

#5 Amanda Thorpe

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Posted 12 September 2015 - 03:58 AM

Hello Starstacee


Welcome to the forums!


On top of what has already been said, I just wanted to point our that diclofenac is not gastro friendly, being a NSAID (non steroidal anti inflammatory drug) this is common. You might want to discuss another pain killer with your doctor. You might find that this helps your gastrointestinal issues in addition diclofenac can cause headaches. You should also avoid ibuprofen for the same reasons.  


Do let us know how your new rheumatologist works out.


Take care.

Amanda Thorpe
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