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Old 11-03-2011, 07:46 PM   #1
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Unhappy Lupus? or RA

Hi,

I am 24 years old.

My symptoms are fatigue, joint pain, morning stiffness.

Over the last 5 years I have had these symptoms plus also an outbreak of urticaria which they found no cause for and also a rash similar to pityriasis rosea, but they weren't sure if that is what it was.

I have only had these 2 skin problems, it is the fatigue and pain that never go away. It does flare up and get worse and get better at time, but is always there. My fingers and toes are starting to change shape.

I had blood work done ...

I had a positive ANA with low titre 1:80 speckled.

My RA Factor came back negative.

I am yet to see a rheumatoligist.

Could this be lupus? Or more likely seronegative RA.

My dad has been having treatment for 5 years for the same things, they say acts like RA but may not be.

Hopefully I can get help for both my dad and I.

Any tips?

 
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Old 11-04-2011, 04:05 AM   #2
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Re: Lupus? or RA

Another Kiwi =]

I'm a couple of years younger than you, but have have many of the same symptoms to you. I haven't received a diagnosis just a million different possibilities (RA, Lupus, Sjogren's, Psoriatic Arthritis, Ankylosing Spondylitis and Behcet's Disease!).

Urticaria is a rash found in autoimmune diseases. I'm not too sure about your other rash though. Your fatigue, joint pain and stiffness aren't overly specific, meaning they're found in lots of different conditions, but aren't strong characteristics of one condition. If you get the rashes again, take photos. What do you mean by your fingers and toes are changing shape?

An ANA of 1:80 would be considered negative by most rheumatologists. Mine says anything under 1:640 is considered negative, but I think most rheumatologist say anything under 1:320 is a negative. A negative rheumatoid factor doesn't rule out RA.

Do you have any swelling in your joints? Does it feel hot inside your joints? Does the skin feel tight?

Can I recommend Sue Rudge as a rheumatologist in Wellington. I've only heard good things about her.

It could be Lupus or RA or Fibromyalgia, or something completely different like Celiac Disease, Diabetes or Thyroid Disease.

I'd make sure you mention your Dad's arthritic like symptoms to the doctors. Autoimmune diseases run in families.

Good luck =]

 
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haylss (11-07-2011)
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Old 11-04-2011, 05:14 AM   #3
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Re: Lupus? or RA

Hello, Haylss & welcome! Re: your rash that resembles pityriasis rosea, I just looked at an article with pic that says it's OVAL in shape. Were yours truly oval, or round? Did they itch or burn? Scar or depigment? Were they located on photoexposed skin?

I ask above because I had years of a less-common lupus rash called subacute cutaneous lupus erythematosus (abbreviated SCLE), that many local drs. didn't recognize. Also, it took years for bloodwork to reveal circulating autoantibodies.

There are two distinct forms of SCLE. One is called psoriasiform or papulosquamous; it resembles psoriasis (but isn't). The other is called annular. In IMMATURE phase, it resembles red, round raised welts, like plump bug bites. In MATURE phase, those same welts reappear but then expand into perfect targetlike circles with clear centers, then finally further expand outward, losing perfect circularity---then fading. (I had 4 years of immature stage lesions, then 4 more years of mature stage lesions.)

Neither SCLE rash tends to itch much, or to scar or depigment. (In contrast, discoid lupus lesions DO scar/depigment.) SCLE favors photoexposed skin. The anti-Ro autoantibody is found in a large percent of patients (not all) with these 2 rashes.

If your rash recurs, then that might be "good", in the sense that a dermatologist or dermatopathologist has something recurrent to biopsy. They look under the microscope for tell-tale cellular changes. Also, if lupus is suspected, they can do immunofluorescent stain tests that can very often (not always) light up in peculiar "bands" that are considered diagnostic of lupus. (I think the 2nd phase is formally called "lupus band test".)

When you say your fingers & toes are changing shape, in what way? RA can disfigure fingers & toes, but I think dermatomyositis can, too (described as "sausage" toes/fingers, I think, wider & swollen-looking).

Have you seen the sticky posts at the top of the thread list, esp. the "Alternative Criteria"? Do you see things from your earlier years? I'll say bye for now. Hope you post more soon! Sending my best wishes, sincerely, Vee

 
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Old 11-07-2011, 03:00 AM   #4
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Unhappy Re: Lupus? or RA

Thanks so much for your kind responses. it is a very confusing time for me and I am just so tired.. I realise I left most of my symptoms out.

Basically, as long as I can remember back I used to get pains in my shins and ankles.. even back when I was about 6 years old. I went to the doctors many times and we were told I had growing pains. I had a persistant injury in my right ankle which was weak and kept getting more painful over the years. and As I have gotten older the pain has been more localised to my joints. First it started in my ankles.. they would swell and be hot and red. Sometimes it feels like needles and other times just throbbing aches. Then it moved into both of my knees. Today my right knee is far more painful and swollen than my left but they are both really stiff. The worst of all though is in my hands. My little fingers have changed shape from the joints. as in the top sections of both of my little fingers point outwards. My big toes point inwards like they are trying to meet my other toes.

The worst pain is in my hands and just typing this email will give me pains in my shoulders from the strain on my hands. the middle knuckles in all of my fingers are rounded and sore and I have been getting really hot hands and feet lately.

I also get tinging in my feet and hands and the GP noticed that I have alot of puffiness around my joints.. even the ones that don't hurt today.

With regards to the rash i had, they were oval shaped and scaly starting from a spot on my stomach and radiating outwards to my arms and legs. They did not scar and were not itchy. They were dark red and not painful. But i was exhausted and tired.

I also had a break out 4 years ago of chronic hives that not only covered the outside of my body but were also in my esophagus.They could not pin point the cause for that either and again.. told me it was stress.

I swear i have been exhausted for 5 years and doctors keep saying its stress or depression. But the only thing I am stressed about is this.

My dad has been diagnosed with RA, but because his condition changes they are not sure they can treat him for RA anymore. They don't know for sure what it is. From my great grandpa down to my dad, every female and male in one line have had RA. My mum has been tested for lupus as she has a malfunctioning kidney that had to be removed but it was not lupus.

I am just so tired.

Thanks for your hugs and responses.

 
Old 11-07-2011, 03:08 AM   #5
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Re: Lupus? or RA

Also.. I forgot to write that all of my joints pop and crack.. they have done since I was small, but in my hands it is constant and painful, especially in my thumbs.

My shoulders grind and a few weeks ago my left hip felt like it popped out.. it was the most excruciating thing i have ever experienced and i managed to massage it back in. It has been sore ever since.

I also get headaches..

God I sound like a 70 year old woman. I get brain fog from the pain.. which is why it has taken me three posts to get this all out. I feel like I constantly have the flu.

I feel like I am going insane.

 
Old 11-08-2011, 02:42 PM   #6
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Re: Lupus? or RA

haylss, have you seen the sticky posts (permanent info posts) at the top of the thread list? There's one with "alternative criteria" = things seen in people who later develop lupus. I've had shin pain since age 13, and I matched on almost all of the alternative criteria---yet wasn't diagnosed with lupus until my 40's. Hope this helps some, Vee

 
Old 11-08-2011, 08:47 PM   #7
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Re: Lupus? or RA

Thankyou!

So far this is what I know:

From the below criteria:

ST THOMAS HOSPITAL CRITERIA FOR DIAGNOSING SLE

1. Teenage "growing pains" - YES and even younger than teen years.


2. Teenage migraine - YES Headaches and cluster headache

3. Teenage "glandular fever" Not as such. but many bouts of tonsilitis and sinus infections


4. Severe reaction to insect bites - YES Severe hives break out


5. Recurrent miscarriages - Never been pregnant

6. Premenstrual exacerbations -- YES!!! Particularly with IBS symptoms

7. Septrin (and sulphonamide allergy) Not sure.. never had it.

8. Agoraphobia.. not so much..

9. Finger Flexor Tendonitis.. severe. Yes

10. Family history of autoimmune disease.. yes

11. Dry Shirmer's Test... not had this test


12. Borderline C4.. don't know what this is.

13. Normal CRP with raised ESR.. haven't had this test

14. Lymphopenia or this one

I am scared now. Moving overseas in a week. don't get to london for 5 weeks.. can't see a rheumy til then.



I also get coldsores in my nose and on my mouth and UTI's. I am getting married in 4 weeks and am so uncomfortable I can't think straight. I have been tested for endemetriosis but they couldn't confirm either way as ultrasound was inconclusive. I have a family history of RA and dairy allergy (which I don't eat).. also my cousin on the same side can't have children and is having similar symptoms. I'm starting to freak a little.

Last edited by haylss; 11-08-2011 at 09:00 PM. Reason: missing info

 
Old 11-09-2011, 05:11 AM   #8
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Re: Lupus? or RA

haylss, if it does turn out to be lupus (and only a dr. can say), you now know more about what your early history may mean, which can be a powerful tool to evaluate your doctors. Only my final doctor looked hard at my past history; and wouldn't you know, what caught his eye were the items on that list. (Who knew, huh?)

Another thing: try not to panic. I know you have big things upcoming(Wedding: congratulations to you both! Moving: I hope it goes smoothly!). But know that if you do get a lupus diagnosis, in this day & age, many people do well & even manage to stay pretty much subacute (no major organ involvement).

Final thought: If you suspect you're photosensitive (meaning both skin problems & overall exacerbation), then you may want to avoid sun & hope that avoidance helps, esp. with all you have on your plate. Wishing you clarity & better days ahead, hugs, Vee

 
Old 11-11-2011, 08:19 PM   #9
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Re: Lupus? or RA

Quote:
Originally Posted by VeeJ View Post
haylss, if it does turn out to be lupus (and only a dr. can say), you now know more about what your early history may mean, which can be a powerful tool to evaluate your doctors. Only my final doctor looked hard at my past history; and wouldn't you know, what caught his eye were the items on that list. (Who knew, huh?)

Another thing: try not to panic. I know you have big things upcoming(Wedding: congratulations to you both! Moving: I hope it goes smoothly!). But know that if you do get a lupus diagnosis, in this day & age, many people do well & even manage to stay pretty much subacute (no major organ involvement).

Final thought: If you suspect you're photosensitive (meaning both skin problems & overall exacerbation), then you may want to avoid sun & hope that avoidance helps, esp. with all you have on your plate. Wishing you clarity & better days ahead, hugs, Vee
Hi,

Thanks for all of your help.

To add to the list my toes turned dark blue in the shower today.. like I had dipped them in ink. They have always been sensitive.. always cold and feel like needles in them when I put them in warm water. They usually turn white, but today is the first time I've noticed them blue.

Maybe the stress is bringing everything to the surface.

Thanks again.

 
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