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Malar rash or rosacea? Other symptoms sound like lupus?

Posted , 6 users are following.

acontender
acontender

Hi all,

Would appreciate your opinions since I know you're all going through it right now.

I started feeling unwell about 4 years ago.  I'm 39 now. Started with bouts of extreme fatigue, extremely dry mouth, and gastrointestinal problems. Also, I developed inflammation of the costal cartilage on my 2nd rib, left side, as well as the breastbone next to the 2nd rib (sternocostal joint). I went to my primary care doctor who was concerned the inflammation may be autoimmune since it runs in my family (RA and MS). He ran a battery of tests (ANA, lupus, Rheumatoid factor, Lyme disease, CBC/blood chemistries) and everything came back normal/negative. Then a few months later my right collarbone around the sternoclavicular joint (where the clavicle meets the sternum) seemed inflamed. No swollen lymph nodes or fever or anything...just the bone seemed pushed up a bit, like there was inflammation below it or something. And sometimes it would throb and be painful. That joint was inflamed for about 5 months, and then it returned mostly to normal, though it still sticks out a little more than it used to. The inflammation of the costal cartilage/breastbone at my 2nd rib is still there - no change.

Since then, I've continued to have bouts of severe fatigue, and I have developed a very noticeable and frustrating rash across my face. See pics below. Initially I thought it was rosacea, but combined with my other symptoms, I started to wonder if it was the malar/butterfly rash. Would love to hear your thoughts.

Here are other symptoms I have - some persistent, some come and go:

--Dry eyes and dehydrated skin (persistent)

--Feeling like I can't get a deep breath (comes and goes)

--Fluid retention, particularly in my face, arms and hands and much moreseo on my left side. Facial puffiness particularly bad in the morning after waking

--Resistence to exercise. I've always been fit/exercised, but I'm having an increasingly hard time. I can no longer run as it causes severe joint pain and "puffiness" to the point my pants don't fit for a few days. It also takes me longer to recover from exercise, and sometimes I'm so fatigued after exercise I just fall asleep

--My brain is mush

--Inflamed gut (I have had a colonoscopy and upper endoscopy which show microsopic lymphocytic colitis, inflamed duodenum, mild gastritis, GERD, and IBS)...my stomach feels frequently inflamed to the point that I have to exercise daily by twisting and flexing to help reduce the inflammation

--Degenerative Disc Disease (lumbar) and herniated discs in my spine (lumbar, thoracic and cervical)

--Increasingly severe knee pain. An xray showed I have chondromalacia and patellofemoral pain syndrome (Runner's knee), but it's getting to the point where even moderate walks are excruciating.

--Rashes: In the last year, I've mainly just had the rash on my face, but over the past 4 years, I've had a variety of rashes on my arms, elbows and tops of hands that seemed to pop up whenever the weather got warm and I went out in short sleeves, so there is some question of photosensitivity. Dermatologist diagnosed me with dishydrotic eczema and gave me a steroid cream which worked wonders.

--Severe allergies. Went for allergy testing. I'm allergy to every tree, weed, grass, cats, dust, mold, etc. I always used to have seasonal allergies, but now I have allergies year-round, which my allergist can't explain.

Anyway, it's been a few years since I had a blood test done, and I'm debating going back to either my primary care doc, a dermatologist or a rheumatologist. Just trying to figure out the best approach. Tired of feeling like a tired, bloated old lady!

0 likes, 14 replies

14 Replies

  • pam_87693
    pam_87693 acontender

    Posted

    Hi yes you sound exactly like me! I am Seronegative so I think you have from your description Psoriasis in your family. The other possibility is your double jointed! Both will be Seronegative to everything. With that amount of scoliosis I'm almost certain your probs are Elhers Danlos depending on your age if your 50+ you may be 0 but at 68 I'm Beighton 9! Back to Lupus it's a distinct possibility so I think you need to be referred to a neurologist to see whether your problems are Lupus or MS. Have you ever had a Table tilt test? It actually most interesting. Try not to worry but certainly the dryness your experiencing needs treatment ASAP 
  • TheLupusGuy
    TheLupusGuy acontender

    Posted

    I vote for primary Systemic Lupus Erythematosus and secondary Sjogren's Syndrome. That's what I have. And I also have degenerative disc disease and herniated discs. If you are currently using or were using in the past any type of steroid medicine, that will completely obliviate getting accurate ANA tests. All steroidal medicines, whether oral, intravenous or topical reduce inflammation and reduce your antigens which is what is measured in the usual ANA panel. It can take anywhere from a week to six months for the effects of steroids to be completely eliminated from your bloodstream which is needed to get a more accurate set of ANA test results. In addition, if you're not having "active disease" which implies a minor or major flare, those tests again may come back negative. To make things more complicated, there is ANA Negative Lupus which is controversial but is considered a valid medical label by most rheumatologists. 

    Up until two months ago, I thought that I had Multiple Sclerosis. I do not. Lupus has the nickname "The Great Imitator" because it often looks just like MS and several other autoimmune diseases.

    It can be quite challenging to find out what exact diagnosis one has in order to manage it correctly. 

    The reason for this is that most of the symptoms that you described plus a plethora of others overlap with various other diseases, some autoimmune and some not.

    Finally, every doctor diagnoses subjectively because most of the time nothing is clear cut.

    I recommend getting the complete ANA panel again assuming you have not been using any steroid medicine for a few months along with all of the other blood work, get an MRI, preferably a Tesla 3.0 which is more accurate, and discuss with your physician if a lumbar puncture to examine your CSF makes sense.

    My most recent MRI was a Tesla 3.0 which showed subcortical lesions. Those are in the Gray Matter which explains my cognitive dysfunction and no short-term memory. An MS diagnosis looks for White Matter lesions, mainly in the periventricular area of the brain. That is how one rules out MS and looks for a mimic.

    Best of luck on your journey to finally get an accurate diagnosis. 

    It took me sixteen years (16).

    • pam_87693
      pam_87693 TheLupusGuy

      Posted

      I complete agree it is the big immitator! I have had to go up to UCH in London as I was certain I had Lupus years ago. I have its in my brain, quite amusing to see pink tap water! However you have to be absolutely certain its SLE as the neuropathies in MS are the same. Like all drugs, if you take one for one condition and it's not the correct drug, your problem get worse. I know know for certain I have a very large wolf in his liar in my brain! Good luck 
    • acontender
      acontender TheLupusGuy

      Posted

      Hi LupusGuy,

      Thanks for your feedback. I tend to agree with your "diagnosis" - I'll be curious to see how things pan out. So sorry to hear it took you 16 years for a diagnosis. That's too long to suffer without knowing what's going on. But from where I sit now, I can see how that could happen because sometimes the symptoms seem to just creep on...and WE can tell something is wrong, but the diagnostic tests aren't as sensitive.

      Thanks for the info about the steroids - the last steroid I took was nasal actually (Flonase)...not sure if that counts. No recent steroids for my back, despite persistent issues. I know you're right about the bloodwork not picking up on disease if you're not in the midst of a flare. I can't ever seem to get in to see the doctor when I'm feeling poorly, so it doesn't surprise me my previous tests were negative. 

      I've never had a brain MRI. I had an episode about 9 years ago when my body went into spasms. I went to the ER, they gave me a muscle relaxant and it helped alleviate my symptoms. The doctor tried to get me an MRI because she was concerned about MS since it's in my family, but I would have had to wait forever to get an MRI from the ER, I wasn't insured at the time and couldn't afford to schedule one later, so I never pursued it.

      I managed to set a dermatologist appointment for next week so maybe at least I can get this rash looked at. I hope she does a thorough examination of it. I have read that sometimes they'll do a biopsy to differentiate between rosacea and Malar rash - anybody have any experience with that?

       

    • acontender
      acontender pam_87693

      Posted

      Hi Pam,

      Thank you for your input! I can see how Lupus would be a great imitator - I've been having so many symptoms that are non-specific, it's difficult to tell what's going on. Elhers Danlos is one I hadn't considered, but that could apply too. I've never had the Table Tilt test - or any test beyond the ANA/lyme/rheumatoid factor blood test. When it came back negative, I was pretty much just sloughed off by doctors.

      I'm debating at this point whether I should go to my primary care doc again for thorough blood testing, or whether I should go straight to a rheumatologist. The problem is getting an appointment when I'm in a flare. My primary care doc sometimes takes same day appointments, so I'm tempted to wait until I feel really poorly and call to try to get in on that day. Might be the best shot I have.

  • TheLupusGuy
    TheLupusGuy acontender

    Posted

    I'm in KetchUp Mode on this thread.

    First, MS runs in my family too and that's why I thought it was MS and so did a few neurologists.

    I'm One for One. And that means that I have one rheumatologist that thinks that I do have Late Onset SLE and Secondary Sjogren's Syndrome and one that thinks that I have neither. The latter is as of today.

    The issue is with all doctors, and that is the magic element of a diagnosis called 'Time'.

    The doctor that thinks that I have SLE and Sjogren's Syndrome spent 2 hours and 45 minutes with me on my first visit, and 1 hour and 45 minutes on my second visit.

    The doctor that doesn't think that I have any rheumatic disease spent 30 minutes with me during the first consultation, and less than 15 minutes TODAY!

    It all boils down to clinically diagnosing or paraclinically diagnosing.

    Paraclinically Diagnosing is strictly looking at blood tests, etc. and formulating an opinion and/or a diagnosis.

    Clinically Diagnosing is carefully reading the patient's medical history, asking the right questions of the patient, and doing a complete physical examination.

    I live in Mexico full-time just an hour south of San Diego. I use both Mexican doctors and US doctors. The ones in Mexico are better because they spend the time to thoroughly analyze all of the data.

    The one's in the US have roughly a 20 minute allocation to observer, process, and think about what is going on with the patient.

    Patient Advocate 101: Do your homework, learn everything about what you think that you might have, and present a brief and concise Case Study to your doctor with tons of supporting research reports to substantiate your conclusion.

    My recent ANA test was positive at the titer of 1:40. That's the bare minimum for being positive, but it does mean POSITIVE!

    My US doctor today poo poo'd that as irrelevant along with my Anti-SSB positive result.

    I've got tons of data that proves that doctor incorrect, along with a new research report that I just read tonight by the Cleveland Clinic that says, "Yes, you need to use the 1:40 ANA result in making a diagnosis for Lupus."

    As you dilute the tests, they become somewhat erroneous.

    Best of luck to all of my fellow victims in the land of Hurry Up I Don't Have Time To Analyze Your Case Sufficiently...

    • pam_87693
      pam_87693 TheLupusGuy

      Posted

      To you I say well your lucky to have doctors who give you time. I realised I was ill from as long ago as I can remember. Now I know that I have SLE I hope the Medicial profession will use me and my 'cot death' son who had neonatal heart block to further their research, because it only takes one to break the rule book to confirm a hypothesis. 
  • pam_87693
    pam_87693 acontender

    Posted

    Well I'm not red I'm pale and I'm not swollen I'm shrinking, so contender I am a very sick old lady but I agree with all you say! 
  • andrew_08416
    andrew_08416 acontender

    Posted

    Hi all 

    Wow thelupusguy has said something very interesting.   My GP suspects that I have Lupus following what potentially is my first major flare. From what I am reading there could also be a few tell tell signs that this was going to happen following successful cancer treatment in 2014.  before the big flare I had periods of admoninal pain which couldnt be explained, bouts of fatigue and flu without flu -  until the big flare up in October last year.

    any bug or infesction/virus was quickly rulled out as well as any cancer reoccurance.  as time progressed my GP started believing it was a chronic fatigue related issue, which I also felt was possible.  But then the rash came.    

    Its not the same as the photos in Acontender (mines not as wide spread across the face) but my GP believes it is the Butterfly rash covering both cheecks and across the nose. 

    Trouble is that I was tested for Lupus and the results came back last week as negative.  My GP still suspects its Lupus.  

    What TheLupusguy has said about steriods is that the same with any anti-inflammatory drugs you take?

    I've been self treating now for over 4 months, including adding anti inflamatory foods to my diet.  I was tested postive for raised LDH proving that I had an inflamation but with no treatment I took it upon myself to take possitive steps. 

    At the time of the Lupus test I was feeling a lot better, that I was winning aginast the inflammation. however that could have easily been time itself. 

    I'm wondering if there is a connection and though no fault of my own I've judged my results.  I take a lot of ibupahine just to get through the day. 

     

    • andrew_08416
      andrew_08416

      Posted

      sorry meant fudged my results. 

      Interesting thought, though 

      regards

      Andy

    • pam_87693
      pam_87693 andrew_08416

      Posted

      Andrew if your GP suggests Lupus whilst self treating is admirable, the fact is the sooner your diagnosed the less damage it will do. Lupus was a death sentence 40 years ago. Not so now, most will live as normal lives even if we have off days or flares. You do need to see your GP! 
  • PinkLava
    PinkLava acontender

    Posted

    Hello!!

    Looks like I'm about a year too late but your story is just SO familiar. I'm making an appointment with a dermatologist today. I figure that's the best place to start. The rash has me thinking Lupus for sure but I've heard Rosacea can be rough too so I'm not sure. 

    Again, I know I'm late to the party but I'd love to know what happened with your situation! 

  • abby78175
    abby78175 acontender

    Posted

    Look up Ankylosing Spondylitis. Your symptoms are exactly the same as mine. And it is such a random disease where pain moves and symptoms includes your whole body. I am sero negative and gene negative, but it can be seen on MRI's. It took 11 years for me to get a diagnosis! I'm praying that you have found a doctor to help you bc this disease is awful. I hv been on biological medication, Humira for 10 months and it has helped me. I still have flares and some degree of pain daily, but I am living my life again for the most part.

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