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Discussion Starter #1
Got this copy today from GP,

ANA PATTERN: speckled 1/640.
Nucleolar

The primary ANA pattern is speckled to a titre of 1/640.

Tha secondary ANA is a nucleolar pattern. Nucleolar antibodies are most commonly seen in patients with scleroderma, SLE, and Raynaulds phenomenon.

ENA results:
Luminex testing of the antigens jo-1, RNP, Scl-70, Sm, SS-A/Ro 60, Ro 52, SS-B/La, Ribo-P and chromatin yielded the following results:
Sjogrens syndrome A/Ro 60 Antigen high positve.

ENA interpretation:
This patient has autoantibodies toSS-A/R 60.
These antibodies are most commonly seen in Sjogrens syndrome and SLE. The anibodies may also be seen in neonatal lupus syndrome and subacute cutaneous lupus.

Can anyone tell me what the **** is going on?
 

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Hello Doris

Those blood tests results support a diagnosis of SLE and may be also a Sjogren's overlap, assuming there are symptoms, as there are in your case.

The subacute cutaneous lupus referred to is a sort of skin lupus often associated with systemic disease and the anti -Ro antibodies. I know you already have a diagnosis of the discoid type of skin lupus so maybe you do not have this subacute type. The anti -Ro antibodies are associated usually with high photosensitivity.

You mention a lacy rash which might be something called livedo reticularis which is quite often associated with lupus and similar diseases

It seems your GP can order specialised tests - ask him to do a test called lupus anticoagulant and also one for anti cardiolipin antibodies.

Urine should be checked too.
I guess this is good news since you are feeling very unwell, so with a bit of luck, helpful treatment will soon be found.
You mention that Plaquenil didn't suit you but it might be OK this time round if you start very slowly and always take with food

All the best

Clare
 

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Hi Clare,
Thank you for such a quick response, i am so angry with it all.
Being told by the other GP that i did'nt have SLE and i see what was written on that page, where in the world was his head, up his [email protected]&%.
And then to say i might have this & i might have that, but not doing further tests ( or so i thought ).
When i go for my specialist appointment, i am wondering if my family GP has sent these test results to her, ( if he got them from the other one, i'm wondering now ). i'm taking them with me just in case.
I have been suffering for years, and thats whats been happening, there was no need, i could have been treated with other drugs to help.
As for the plaquinil, it did help very much, but it was the gas i could'nt cope with, i really could'nt go out in the evenings because of it, it was very unpleasant.
If you have any more info, please send on to me.
Many, many thanks
Sandra......
 

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Hi Sandra :)

I share your anger :mad::mad::mad: Was this a previous GP who took those tests? Did you ever see a Rheumatologist? I guess you maybe did if you were treated with Plaquenil.

I'm glad you got a hold of those results and I'm glad you have an appt coming up soon. This should make them sit up and take notice.

As Clare said you maybe should give the Plaquenil another try and that will probably be suggested. It needs to be treated, gas may be embarrassing and unpleasant but not taking disease modifying meds can result in far worse things than gas! You should control this and get some relief from your symptoms at the same time.

Those extra tests mentioned like urinalysis and the clotting antibodies - I'd try and get them done too prior to seeing the Rheumy if you are able. That way your Rheumy will have a pretty good overall picture when you get there.

Good luck and yes I would take a copy along in case they have not been sent to your Rheumy ahead of time. Let us know how you get along.

love
Lily
 

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Discussion Starter #5
HI,
I do have a list of other test results that he has ran, but it's understanding them, there maybe the answers to other test in there, i have never been asked for a urine sample when i was seeing this other GP, but one test on the list a GFR , there was mentioned that i should see a nephrologist, one test was low & the other one was high, and i have been getting pain around my kidneys on & off for over a year.
Many thanks.
 

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The Other Illinois Tammy
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Doris,
It sounds like you are on the road to a dx! I am not sure to be happy for you or sad. Many are happy by the time it comes because it shows they were not crazy all this time and that something was going on the whole time. Other it is the sadest day in their lives. I am sure for you it is just knowing what was wrong brings some relief. I hope you are feeling well.
 

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Thank you all for your support with this one,
I think that after seeing the rhemie next month, and she can answer a few questions for me and hopefully a dx, i will be relieved first and then bawl my eyes out.
This has been a hellish 10 years, i am trying not to get my hopes up to high, cos it could all come crashing down, if she can't find nothing either.
THANK YOU, THANK YOU, THANK YOU.
As soon as i know anything i will post.
Hugs & spoons.
 

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Pollianna
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Doris i would really urge you to stick with the plaquinil. I had an awful nausea and today after a week on it have a very sore tummy but it will help us. I'm sure the symptoms will subside given time and we could eat foods that don't cause tummy upset?

I'm glad i started it, my schimmers test was bone dry and I think my eyes are damper with only a few pills. What have we got to loose?

Hope the rheumy appt goes well xx
 

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Discussion Starter #9
Thanks Pollianna,
If it comes to it, that i have to take it again then i will, everyone will just have to put up with "farty pants" LOL.
Hugs.
 

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Hi Doris,

I can understand your anger but at least now you have a better idea of what your dealing with. I wish you luck with your rheumy appt. and let us know how you get along moving forward.:wink2::wink2::wink2:
 

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Hi Sandra,

I would take along copies of ANY abnormal tests you had done in the past.
Maybe they should have sent you to a Nephrologist, it's a possibility that your GFR was low and creatinine was high, a clear indicator of kidneys not functioning properly. Anyway hopefully this new doc as long as she has all this information will run a load of tests to find out what is actually happening on all fronts now.

love
Lily
 
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