[Virginia02]

Well well, changed places : "newly diagnosed" !!:rotfl:

Got today all my results, so Im posting them here, but I guess they say it all - lupus! My rheumy said he is not interested in my results as it doesnt matter what they say, he knows its lupus....:worried:

So, here I am posting them up mostly because its a question mark on anti Sm and anti dna

ANA - positive - no titre given
ASO - 771
Serum Anti -ds Dna - 1.3 ( it says bordeline positive)
ENA ( only Anti Sm is positive, all rest negative)
Aca IgG - 03GPL UML
Aca IgM - 04MPL uml

c3 - 141 mgdL
c4 - 23,7 mg dL

wbc - 6,100, rbc 3.75, platelets 185,000, lymphocites 33, ESR 61...

anti ccp antobodies Rf - 0.3 uml

Tmr im seeing my dr who wants to put me on higher dose of steroids because im going off for holidays! I was just down to 10mg and happy...

So...all these confirm LUPUS or not...

love,
Virginia

 

[Katharine]

Hi Virginia,

I'm glad that you have a result that is "clearer" for you.

I have to say that I don't spend too much time trying to interpret my blood test results. With lupus they are only a tiny tiny part of the picture and if your rheumy is sure you have lupus then that's good enough for me.

It took months in my case for anything semi-coherent to come up in blood tests and even when it did it was very complex. Thankfully I had been treated for a while at that stage having tested positive on a skin biopsy earlier, so with that plus the clinical signs I had my diagnosis.

I think it is only natural to question a diagnosis. I'm sure that even those who have been coming here for ten years still keep thinking that someone is going to turn around and UNdiagnose them. Maybe that's down to the difficulty of getting someone to take us seriously in the first place, never mind diagnois. Maybe it's the "I hope I'll wake up and it's all a bad dream syndrome".

You mentionned steroids and having them increased for your holiday (in my experience a very good idea - wish more rheumies understood it) but do you actually take anything else, as in plaquenil?

It would be good to be on plaquenil and/or another disease modifying drug in the hope of coming down on and maybe off those steroids at some stage. Did your rheumy mention anything about that? I mean, maybe you have already tried other drugs and you reacted badly or maybe you're taking something else and didn't mention it? Maybe I should take the time and read all your past posts before asking questions...you'll forgive me but I'm too tired today!

all the best,
Katharine

 

[Virginia02]

Hi Katharine!!

Im also on Unitrexate 2p a week and Xobix plus some minerals that I take for my muscle and bone health! Hope to have stress free holidays as I am going to Innsbruck for ten days...kinda scared

Take care of that tiredeness!

 

[Katharine]

Ah well, that is good to know that you are also on unitrexate (methotrexate) as well. I hadn't heard of Xobix before - I googled it and apparently it is used in "osteoarthritis, rheumatoid arthritis and other painful and inflammatory conditions". I think it may have another name depending on the country but all in all, the important thing is that I would say it sounds like you have a good rheumy who is treating you well and taking you seriously.

I hope the holiday goes well and that the extra pred prevents any ill effects.

Katharine

 

[Virginia02]

Xobix its a NSAID here.... sorry for not being specific!

Dr said I have sort of mild lupus, or not very active NOW ( my pains say other story!:lol as my Dna is negative (or borderline positive) while Anti Sm is positive for lupus...

Keeping it up! Leaving Wed for Europe so wishing you all a Merry Xmas and A happy ( pain and worries free!) New Year!

hugs,

Virginia

 

[LolaLola]

Dear Virginia,
Warm Greetings to you too, have a lovely time. Travel is scary, but you will probably be glad you went.
x Lola

 

[Virginia02]

Dear Lola,

Warm greetings to you, Immi and all the other members of your family! Hope to hear next year that all of you are feeling much much better and Immi is less tired in the new year!

:thumbs:

 

[Lily]

Hi Virginia and welcome to the other side of the fence :hehe: :hug:

The smith antibody is highly specific for SLE, so it's quite easy to diagnose with certainty now. I hope that the increased Pred helps calm down your inflammation quickly :hug:

It's often the case that people take Plaquenil and Methotrexate together, in fact it's quite the norm. It would give you extra disease control and hopefully either stop the need for Pred or at least enable you to decrease the dosage. Of course Plaq does take many months to kick in but the sooner you start, the sooner it will take effect. How much Metho are you on right now Virginia?

love
Lily

 

[KarolH]

Enjoy Europe Virginia and Happy Holidays to you too.:wink2:

 

[lin]

So pleased, well not pleased if you get me but pleased you will now be getting the right treatment you need Virginia


take care Lin x

 

[Virginia02]

Hello and Merry Xmas!

Its been dreadful for me as I have been on roads, trains and flights for like 5 days and when I reached i was almost in bed for 3 days in pain. Had to call my dr and assk for an increase in Pred from 10 to 20mg and still I am in quite pain mrn and some stiffness in my right knee.

Im on 3 pills of metro a week and im not taking any plaquenil as dr said to wait and check on metro... but dont know yet why I am feeling so down for now one week constantly. Saw a dr in Uk and he said I dont have lupus as only 3 criteria I touch out of 4 needed so I shd call it an ' inclination' for lupus...

Saturday 3rd Im again starting to travel towards Innsbruck, then Dubai, then Islamabad..I bet by the 12th when Ill reach Ill be half dead!

Kisses to all of u and best wishes for the new year!

 

[LolaLola]

Dear Virginia,
I am very disappointed that you have been so ill. Unfortunately although having a positive attitude helps, it cannot work miracles. I hope the extra steroids help.
You may end up increasing the Metho. I am on 17.5 mgms per week. 7 tabs. which seems pretty average. It does take time to get the right dose. I don't really like all the talk of "an inclination" to Lupus. I feel that symptoms need treating irrespective of what it is called.

Regarding you feeling down, can I do anything? I can always listen if that helps. We all need someone who understands this illness. Lupus friends are invaluable.
Take Care, and let us know how it goes. I hope your travel improves.
x Lola

 

[Virginia02]

Forgot to ask!!

Dear Lola,

Thanks so much for the support, been lucky today and had my aunt, whos a nurse, giving me a back massage that worked wonders!

Wanted to ask...had for 2 days some little blood...meaning between periods and I NEVER ever had something like this in my life....:worried::worried: What is that all about? Should I worry??

I had also lupus anticoagulant moderately positive, while IGg and IGM are both negative...just on XMAS got the result...hah

Thanks so much for all the support...I hope u all r having great Holidays!

Lola...kisses to u specially! Thks for the kind lines!

 

[LolaLola]

If you do not generally bleed in between periods it would be worth mentioning next time you see your Doc. It is quite common and almost certainly okay but as it has never happened to you before do check on it.

Will be glad when you are back here safely.
x Lola

 

[Joandublin]

Hi Virginia

I was sorry to hear you had been so unwell. That journey home sounds like a nightmare :worried: Do whatever you can to make it bearable. Is there a lot of driving involved? If so, I hope you are the passenger? Take a blanket and a pillow and sleep as much as you can :hug:

Let us know how you are doing
Take care for now
Joan:rose: