Author Topic: SICCA ..blood work negative  (Read 1179 times)

artistangie

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SICCA ..blood work negative
« on: July 13, 2012, 04:28:05 PM »
Thats what my records show. Doctor says I have sjogrens he is sure. He said that I've caught it early which is why my blood work shows no markers. He also said when you catch it this early and start plaquenil you can beat it... Have you heard that?  Is that probable?
"Life is not about waiting for the storm to pass, It's about dancing in the rain anyway."

iraisin

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Re: SICCA ..blood work negative
« Reply #1 on: July 13, 2012, 04:57:54 PM »
I've never heard that. But I hope it's true for you, I truly do.
45 yr. old mom-2 boys, Primary Sjogren's (SS-B)
fatigue, brain fog, muscle & joint pain, gastric, arthritis
Flaxseed, Evening Primrose, Plaquenil, multi-vit., salagen, digest enzyme, Pantoprazole, D3, Cranberry, CoQ10, GenTeal ointment & gel drops, NasoGel, Oralbalance, Vinpocetine, Naproxen

Winnie

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Re: SICCA ..blood work negative
« Reply #2 on: July 13, 2012, 05:13:46 PM »
I have a Rhuemmy who is very good and is the head of the department in a state university hospital.  He is also doing a large study over lupus.  He indicated that plaquenil can slow down or stop the disease.  I only have sicca - ANA 1:320 speckeled with mild symptoms.  He says I have nothing but sicca.  The other doctor that works with him says I have something but blood work does not show the specifics. 

What I have learned from here is that there are people that never had positive blood work but yet are very sick.  I would like to believe your doc and mine, but I am afraid that I will be disappointed.  I keep praying that they will find a cure for all of us.

Winnie
Sicca Syndrome-Aug 11', osteopenia, IBS-C, gastritis, GERD
Plaquenil, Dexilant, Vit D, Calcium, gluten free, dairy, egg & nut intolerances

eye2dry

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Re: SICCA ..blood work negative
« Reply #3 on: July 13, 2012, 05:24:30 PM »
Hello.

I am not sure what your dr. means by "beat it".

My rheumy just said Plaquenil will help relieve some of my symptoms and slow it's course down. For some it doesn't even work. I have been taking it for 18 months.

People on this forum seem to have mild symptoms that never turn bad...and others who progress to severe symptoms/problems. You just never know how it's going to go for you.

Sometimes your dr. may add another med in on the Plaquenil if it alone isn't doing the job.

I hope your Plaquenil does wonders for you....I sure am grateful for mine...helped with fatigue and joint pain...did nothing for my mouth or eyes.

take care.

eye2dry

artistangie

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Re: SICCA ..blood work negative
« Reply #4 on: July 13, 2012, 05:42:09 PM »
iraisin, exactly what i told him... that i had been reading and that it was a chronic condition (sicca is too, right?)

Winnie, i am determined to remain hopeful but not ignorant...know what i mean?

eye2dry - if i understood him, and my husband was there too, beat it as in become healed and not have it.... 

 i go back in 3 months and wean off the prednisone in the meanwhile
"Life is not about waiting for the storm to pass, It's about dancing in the rain anyway."

artistangie

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Re: SICCA ..blood work negative
« Reply #5 on: July 13, 2012, 07:56:46 PM »
And btw, it's okay for me to still hang out here right?  .. The official dx being sicca and all I kinda figure it's best to make sure.  It's just so odd being told here's your dx even tho I think you really have something else but hey maybe it will all just go away.
« Last Edit: July 13, 2012, 08:02:17 PM by artistangie »
"Life is not about waiting for the storm to pass, It's about dancing in the rain anyway."

iraisin

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Re: SICCA ..blood work negative
« Reply #6 on: July 13, 2012, 08:20:02 PM »
I've posted a link to a discussion on this issue. I remember you saying you've been tired. Just because your dr. is saying SICCA, doesn't mean he's not really meaning SJS. That may be something you want to clarify with him. You don't treat SICCA with Plaquenil, you treat SJS with that.

So, I think what this sounds like is a literal translation based on an old term that now identifies a symptom only rather than a disease getting mixed up. Is your dr. older? Maybe he/she is still using and old term.

http://sjogrensworld.org/forums/index.php?topic=14314.0

I don't want you to go, I love seeing your changing avatars and sweetness typed all over the place :).

And I think you will find that you can still get help here since you are suffering from fatigue and dryness. There's a lot of helpful advice when you go through the phases of both of those issues.

You are welcome.
45 yr. old mom-2 boys, Primary Sjogren's (SS-B)
fatigue, brain fog, muscle & joint pain, gastric, arthritis
Flaxseed, Evening Primrose, Plaquenil, multi-vit., salagen, digest enzyme, Pantoprazole, D3, Cranberry, CoQ10, GenTeal ointment & gel drops, NasoGel, Oralbalance, Vinpocetine, Naproxen

artistangie

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Re: SICCA ..blood work negative
« Reply #7 on: July 13, 2012, 08:41:11 PM »
He says he can't tell me sjogrens because my blood work was negative but he thinks I am in beginning stages but the plaquenil will make it go away.  And yes he's older lol he told me he is71.

Thanks for letting me stay <3. I need y'all.
I will change avatar tomorrow ;)
"Life is not about waiting for the storm to pass, It's about dancing in the rain anyway."

Ark mom

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Re: SICCA ..blood work negative
« Reply #8 on: July 13, 2012, 11:44:16 PM »
Personally, I have had undiagnosed sjogrens for about 15 years--dry eyes and mouth spells, neurological symptoms, etc, but I do not have any positive bloodwork at all.  No ANA, SSa, SSB, CRP, ESR, etc.  No typical autoimmune markers at all, but I have had this a long time.  So, you could go a long time without showing anything.  Recently, over the past three years, it has gotten worse but still no evidence other than symptoms. 
41 yo with Sjogren's (sero-neg), FMS & sub-clinical Graves; Plaquenil, Evoxac, prednisone, Restasis, Cellcept, gabapentin, duloxetine

gold55

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Re: SICCA ..blood work negative
« Reply #9 on: July 14, 2012, 12:11:40 AM »
I have a low ANA....it has ranged from 1:160-1:40, I have SSa antibodies, no sed rate, no CRP, never had fatigue, mild eye and mouth dryness and I'm 58 years old.....have osteo in big toe joints and minimal tips of fingers.....they still don't know for sure if I have SJS because I don't clinically present with all the symptoms.  So, I can't really say that the blood markers dictate a firm diagnosis.  I could have had this for years.  I'm the opposite example that blood work can be positive but symptoms can be minimal for years.
Having faith in your doctor is very important.  I hope you stay well :)
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

matildamillicent

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Re: SICCA ..blood work negative
« Reply #10 on: July 14, 2012, 04:34:22 AM »
This is exactly what my doctors have said to me. If you treat it 'early' before the blood markers pop up there's a good chance on permanent remission. I'm on Plaquenil and have told that I'll be on it for the next 3 years. I'm hopeful!

Winnie

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Re: SICCA ..blood work negative
« Reply #11 on: July 14, 2012, 07:04:06 AM »
Hey, my doctor is old too!  I think the most important thing is treatment and accepting that normalacy is different now.  I have a gastro, rhuemmy, eye doc and naturopathic doc that tell me all a different diagnosis.  I may end up getting something on top of sicca or already have it.  Who knows.  I really don't think any doc can predict what will happen.  RA runs in my family, so I believe that I am in this thing for the long haul.  I'm on Zoloft and that is helping me cope with the unknown.  It is very interesting to hear all of the responses that our doctors give us!

Winnie  :)
Sicca Syndrome-Aug 11', osteopenia, IBS-C, gastritis, GERD
Plaquenil, Dexilant, Vit D, Calcium, gluten free, dairy, egg & nut intolerances

mshistory

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Re: SICCA ..blood work negative
« Reply #12 on: July 14, 2012, 07:36:25 AM »
I've never heard that it can go into permanent remission if caught early - that would be wonderful!

I was apparently way too late, then, though. My ANA and SS-A are both so high, my lab stopped measuring, and my RF was really high too. But I didn't have any really bothersome symptoms until the past couple of years, and when I finally thought something may be up and went to a doctor, my blood was already full of these lovely autoantibodies  :(

I do hope that for all of you who are being treated early that your disease goes into remission!!
SLE and SjS. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Clonazepam, Zoloft, albuterol, Imitrex for migraines, CellCept 1500 mg, Plaquenil 200 mg, Restasis, Ocuvite, Zofran for nausea, Protonix, Gabapentin, Evoxac and Lortabs for pain. I'm a walking pharmacy.

artistangie

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Re: SICCA ..blood work negative
« Reply #13 on: July 14, 2012, 08:26:40 AM »
mshistory, i did comment to my husband on the way out that i supposed it was a a good thing i kept going to the doc (fatigue, swollen nodes, flu like achiness) even tho they kept saying they couldnt find anything

Winnie I totally agree with you, so much AI in my moms family and if it goes away well wonderful but like i said i will remain hopefully but aware///beside i still feel like crap right now lol

matildamillicent  3 years!!!  that doesnt sound like it is going away

gold thank you and i wish the very best for you too!

Ark mom , i suppose that is my worse fear at this moment  Hugs
"Life is not about waiting for the storm to pass, It's about dancing in the rain anyway."

gold55

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Re: SICCA ..blood work negative
« Reply #14 on: July 14, 2012, 09:29:37 AM »
artist,
You have a super attitude so no matter what changes take place in your life and with your health.....you will be OK!  My Dad was supposed to leave us from bone cancer after 1 yr post-diagnosis and instead he lived 9 years because of his positive attitude and his humor!!  I only can hope to handle my chronic illness like he did!   Taking care of my Dad was the exact opposite of caring for my Mom in her older years with chronic illness.  He had cancer and she has autoimmune yet their outlooks were so very different.  He saw hope and enjoyed every minute of life.....she sees doom and gloom and complains constantly (when I'm present).  It's been quite the learning experience having chronic and fatal illnesses in my family most of my adult life!
Keep the spirit honey!!! 
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with