Sign Up Today!

Elemjay · 09-29-2011, 07:52 AM

Hello Everyone,
I really think I may have Lupus but would like the take of more experienced sufferers....
Currently now suffering fourth week of "tonsillitis", which today's doctor believes to be Glandular Fever. May explain why no antibiotics were helping.
I am to see a Rheumatologist next week due to:
Recurring tonisllitis (6 or so bouts in past year, but have had this all my life)
Recurring sinusitis (again, 6 or so bouts and again have had this all my life)
Uveitis for 13 years (in remission since my son was born 11 weeks prematurely - after I miscarried the first baby-)
Allergy/intolerance to PenV
Cannot take Cephalexin - bad allergy, blood pools in joints?
Migraines as a young teen to early adult, but not now.
Inexplicable rashes on the tops of my hands and feet when in the sunshine (sometimes??) - steroids and/or steroid creams had no effect - neither did Factor 50!
Swellings (sometimes, not always) if I go into cold water (yes, we swim in the seas and lochs in Scotland sometimes)
Severe over-reaction to midgie or cleg(horsefly) bites...massive swellings that take a long time to heal.
Sudden onset of asthma???? I'm 41 and have only in the past year had to take inhalers.
About three occasions of fairly severe hair loss - each time I just cut my hair short and ignored it and it grew back?
I had the test for "Photo sensitive light eruption" done on bloods that came back negative.
I had the ANA test which also came back negative... this was done by a dermatologist who I was referred to due to the awful, itchy, red, rash all over the backs of my hands... which had gone by the time I got my appointment and I'm still waiting for it to come back so they can do a biopsy??
I also have appalling chilblains on my fingers all Winter, despite wearing sheepskin gloves and trying to keep my hands warm....
To my limited knowledge all of the above do seem to indicate Lupus, but what if this next appointment is yet another wasted journey.....
I am SO TIRED OF FEELING ILL AND TIRED... I've forgotten what it feels like to have the energy to want to do anything, my garden was even a struggle this year for me....
Does anyone have any comments or suggestions for me?
I would be ever so, ever so, ever so extremely grateful

backster · 09-29-2011, 10:00 PM

Quote:

Originally Posted by Elemjay

Hello Everyone,
I really think I may have Lupus but would like the take of more experienced sufferers....
Currently now suffering fourth week of "tonsillitis", which today's doctor believes to be Glandular Fever. May explain why no antibiotics were helping.
I am to see a Rheumatologist next week due to:
Recurring tonisllitis (6 or so bouts in past year, but have had this all my life)
Recurring sinusitis (again, 6 or so bouts and again have had this all my life)
Uveitis for 13 years (in remission since my son was born 11 weeks prematurely - after I miscarried the first baby-)
Allergy/intolerance to PenV
Cannot take Cephalexin - bad allergy, blood pools in joints?
Migraines as a young teen to early adult, but not now.
Inexplicable rashes on the tops of my hands and feet when in the sunshine (sometimes??) - steroids and/or steroid creams had no effect - neither did Factor 50!
Swellings (sometimes, not always) if I go into cold water (yes, we swim in the seas and lochs in Scotland sometimes)
Severe over-reaction to midgie or cleg(horsefly) bites...massive swellings that take a long time to heal.
Sudden onset of asthma???? I'm 41 and have only in the past year had to take inhalers.
About three occasions of fairly severe hair loss - each time I just cut my hair short and ignored it and it grew back?
I had the test for "Photo sensitive light eruption" done on bloods that came back negative.
I had the ANA test which also came back negative... this was done by a dermatologist who I was referred to due to the awful, itchy, red, rash all over the backs of my hands... which had gone by the time I got my appointment and I'm still waiting for it to come back so they can do a biopsy??
I also have appalling chilblains on my fingers all Winter, despite wearing sheepskin gloves and trying to keep my hands warm....
To my limited knowledge all of the above do seem to indicate Lupus, but what if this next appointment is yet another wasted journey.....
I am SO TIRED OF FEELING ILL AND TIRED... I've forgotten what it feels like to have the energy to want to do anything, my garden was even a struggle this year for me....
Does anyone have any comments or suggestions for me?
I would be ever so, ever so, ever so extremely grateful

I'm sorry to hear you're not feeling well. I know how it just sucks the life out of you, and how frustrated you are at not knowing what is wrong. Even though I was terrified with the diagnosis of Lupus, I was relieved that I finally had a name to what I had been suffering with my entire life.
95% of all diagnosed Lupus patients have a positive ANA. There is a criteria for a positive diagnosis to Lupus, and without the positive ANA test it is pretty good evidence that you do not have Lupus. That being said, ANA tests fluctuate and can be negative when the disease is in remission. It doesn't sound like you were in a state of remission though.
Here is the list of the 11 symptoms, of which you need to have 4, though not necessarily at the same time.
1. Malar Rash on cheeks
2. Discoid rash - red scaling patches on skin which leaves scars
3. Oral ulcers in the nose or mouth, usually painless
4. Non-erosive Arthritis in two or more peripheral joints.
5. Kidney disorder -Elevated protein in the urine, over .5gm/day, and/or cellular casts in the urine.
6. Neurological Disorders - Seizures or psychosis not caused by drugs or metabolic disorders.
7. Photosensitivity - Reaction to UV light resulting in or worsening of skin rash.
8. Serositis - Pleuritis or pericarditis
9. Hematologic Disorders - Hemalitic Anemia(low red blood cells). leukopenia(white blood cell count <4,000), Lymphopenia, or Thrombocytopenia
10. Anti Neuclear Antibody - Positive ANA without the presence of drugs which induce it.
11. Immunologic Disorders - Positive anti-double stranded anti -DNA test, Positive anti-Sm test, positive anti-phospholipid antibody test, False positive
VDRL test (Syphilis)

This is adapted from the 1982 Revised Criteria for the Classification of SLE, Arth Rheum 25: pp 1271-72

There are so many other symptoms that Lupus patients suffer from, including some of which you are experiencing. You may not get a positive Lupus diagnosis but perhaps a non-specific autoimmune disorder.
In the meantime, while waiting for your next appointment you may want to look into gluten allergies (Celiac/Sprue) which can also wreak havoc on your immune system.
I wish you luck and speed in finding what ails you.
Keep us posted.
Jane

VeeJ · 09-30-2011, 04:42 AM

Hi, Elemjay, and welcome! The SLE criteria say much about "classic" SLE, barely hinting at a huge number of "variants" lurking about the perimeters. (I learned this the hard way.) You suspect some of your issues fit the criteria, yet not enough, and you wonder, "Well, my problems look close, but are they close enough?" I think of this as the "kinda sorta dilemma".

Reading your post, my mind went to a variant included on a surprisingly HUGE list of variants a metro specialist gave me, called "chilblains lupus". Interestingly, it said researchers believe antiphosphipholipid syndrome (APS) is often seen with this chilblains variant. (You mentioned migraines & miscarriage, which made me wonder about APS. There's a sticky post = permanent info post on APS at top of the thread list.)

Re: ANA, the books say that 95% to 98% of people with SLE will have a positive ANA. The exception is Ro-lupus, in which people are positive for the anti-Ro autoautoantibody but their ANA is somehow "masked" by the anti-Ro. People with anti-Ro tend to be very photosensitive: their most common rashes are SCLE psoriasiform (looks like psoriasis but isn't) and SCLE annular (targetlike). Neither SCLE rash tends to scar/depigment. (Here I'm thinking about your rashes. Skin biopsy sure makes sense to me! BTW, including *immunoflourescent stain tests* in the biopsy could be helpful. The stain tests were the extra step that proved my rashes were lupus rashes.)

Other problems you cite sure sound familiar! I think hair loss is common in lupus; also extreme immune reaction to bug/insect bites, recurring infections, and breathing problems & rapid heartbeat (pants & pulses, one of my books calls these). But the problem with symptoms like these? They're not specific to any one condition...

So hopefully your new rheumatologist can jump right on your most "useful" symptoms. And I hope he casts a wide net, looking at lupus & its VARIANTS, but also other conditions in the ballpark. I also hope that despite your negative ANA, he runs autoantibody "subtype" tests (given that Ro-lupus exception described above).

I'm really sorry you're going thru this---confounding & frustrating! I'm glad you found us here & hope you post more when you can, OK? Sending my best wishes, sincerely, Vee (P.S. My Dx was that Ro-lupus variant, which explained my "kinda/sorta fit" to the ACR criteria. Took forever. Grrrrrrrrr!)

Sign Up Today!

Join Our Newsletter

Whoops,

Thank You