Question for those that are seronegative

[sassygal]

When you say "seronegative" does that only apply to SSA, ANA, SSB, etc. or does that also include
normal results for ESR (sed rate) and CRP?

My sed rate and CRP have never been elevated, no matter what. After a botched laproscopic gallbladder surgery that resulted in peritonitis and pancreatitis, sed rate was negative.

The only thing that has been positive for me (and each was at a different time... not all together) was an ANA years ago, anticardiolipin antibody and most recently Rheumatoid factor. For two and a half years I was treated for SICCA (SX- dry eyes & mouth, fatigue, joint pain, nausea and flu like sickness)

Rheumy said it was sjogrens and I was put on plaquenil & mobid and did fairly well on it. Rheumy leaves practive and was replaced with a NP fresh out of school. RF had been positive for 3 yrs. and done at 2 differnt labs with same results. Rheumatoid factor tested normal range with first visit with NP and I was told it had been a "false-positive". My diagnosis changed from SICCA to "hand pain & foot pain" .  Have been off the plaquenil & mobic since April 2013 and having a rough time. Never went back to the NP.

I would think it was possible for the plaquenil treatment to lower the rheumatoid factor over time,
but NP said "NO!" quite emphatically. I also mentioned seronegative sjogrens and she said "well you don't have it!" I asked about the prev. doctors notes and her observations and documentation and the reply was" well I don't SEE any of it".

So now I am wondering, did I take medication unnecessarily? I don't want to be misdiagnosed and don't want to take medication if I don't need that medication. SOMETHING is definitely wrong and I have gotten much worse, especially during the summer months.

I have been lurking on this board for a long time and have learned alot. Between Lupus, RA and Sjorgrens, which were all on the original rheumy's radar, my sx. fit sjogrens the most.

Thanks in advance for any input!

Sassygal

[eija]

I'm not seronegative (my ENA's and ANA's as well as RF are all positive but not CRP, SED rate was slightly elevated a year ago but not anymore) but I'm saying - find a new rheumy. If you felt better on Plaquenil then it wasn't unnecessary. Even on this board there are so many examples of seronegative people who get help from Plaquenil that you really aren't alone. Positive labs or not, that's how this sickness is treated: Based on symptoms. And if something helps the symptoms, then it's the right treatment.

At least I'm that simplistic.

[lighthouse33]

I posted this article earlier in the year.  I believe it was helpful to people here on the forum.

Seronegativity for Dummies: A Lesson in Seronegative Blood Results

http://chroniccurve.tumblr.com/post/15295991395/seronegativity-for-dummies-a-lesson-in-seronegative

I am SSA, SSB positive and have a low titer positive RF and ANA.

[sarahjane]

All blood tests for SjS including inflammation markers have always been negative. Same re my lip biopsy. I've been treated since the beginning of the year and dx with SjS despite this. I do test positive for thyroid antibodies and high TSH and had neuropathy confirmed with a nerve conduction study so on the basis of this my Sjogren's was confirmed.
Unfortunately many clinicians believe that the criteria for SjS (designed for research studies) is gospel in diagnosing.
Is it possible for you to see a different rheumatologist?

[litliwlowa]

Hi sassygal

I'm seronegative. My lip biopsy was also negative.

My rheumy still dx'd me with sjogrens-primary. I've been on Plaquenil and Evoxac (rx'd by rheumy) since about March thereabouts. They help. As does Restasis (rx'd by my eye doc)

Basically, in summary when it comes to AI's, it's symptom management. And yes, that involves medications for many of us.

Why some of us are seronegative and other's have positive findings is beyond the realm of my understanding. Typically, when seronegative the diagnosis ends up SICCA (dry basically).

It would appear in reading of others' experiences that different doctors approach seronegative differently. Some, like your NP emphatically stated you don't have it, take the position that if labs are negative then isn't Sjogrens.

My rheumy takes the position, even tho I am seronegative, the entire clinical picture of me which screams Sjogrens symptomatically and stands by his diagnosis of Sjogrens-Primary. Part of that includes already having Hashimoto's (2008) which is believed by many of my specialists to be secondary to Sjogrens. That and symptom management approach is at least minimizing the severity of flares. But I also have complex other medical issues as well, that are not attributable to Sjogrens.

The bottom line, in my humble opinion, is listen to your body and if you're not getting answers and not being heard, then perhaps a change in doctor is merited.

As to taking a medication unnecessarily, if your doctor has determined that this or that medication may be helpful in treating your symptoms, personally I think it's worth a try. Now Plaquenil can take months before full benefit is realized. Just so you know.

And if you can speak with the doctor directly and work around that NP, certainly do discuss any concerns you might have about that medication and any other he/she may be recommending.

Hugs

Amanda

[litliwlowa]

I posted this article earlier in the year.  I believe it was helpful to people here on the forum.

Seronegativity for Dummies: A Lesson in Seronegative Blood Results

http://chroniccurve.tumblr.com/post/15295991395/seronegativity-for-dummies-a-lesson-in-seronegative

I am SSA, SSB positive and have a low titer positive RF and ANA.

Thank you for that link. Very helpful!!

[Carolina]

Hi sassygal,

I have always been negative (normal) for every autoimmune condition.

Once again the neurologist I'm seeing says,"no you don't have Sjogren's due to negative bloodwork"

He's looking for the cause of my profound PN, but still refuses to think I have Sjogren's. 

I don't really care cause he's  not going to find a cause, and I believe it was either an antibiotic I took, or my Sjogren's (that I DO HAVE, so there!).

And it doesn't make any difference,anyway, since he won't find  a cause, and it can't be cured or fixed and it's not progressing, which was my biggest fear.

At least it hasn't i the past 3.5 years.

The KEYy is to get the treatments you need. 

I did find that having confirming tests for a diagnosis is very validating, so wish I had some for all of my autoimmune conditions.

However, I don't always get what I want.  that's for sure.

Hugs,  Elaine

[sassygal]

Thank you all for the replies!

Lighthouse 33, thank you for the article link... it was eye opening for me. If research has shown facts about seronegativity, why aren't the doc's on board with that? I don't get it.

I had great confidence in my previous rheumy and know the NP's problem is mainly due to not having any prior rheumatoid practical experience. After going the summer without the meds (plaquenil, mobic, restasis and pilocarpine), all the symptoms worsened. Added to that was worsened fatique, unable to tolerate heat & humidity, feeling like I was walking uphill in sand all the time and having severe muscle spasms. I have always taken mag/cal/vit D supplements for the muscle spasms, but that symptom has really escalated. Nausea, brain fog and fatigue are ever present. Dizziness and stumbling are new and being so spacey in the head that I can't drive and pay attention to wherew I am going are getting scarey.

During my annual physical, my PCP thought it was time I was checked out by a Neuro to rule out MS, since an older sister has it. I had never even thought of it since way back when the symptoms started emerging, all the doc's were say it was a rheumatoid problem. I also have neuropathy as well and though I am Type 2 diabetic, my glucose levels are well controlled so I don't think the neuropathy pain increase is from that.

Not only did I lose the good rheumy, my opthomologist at Duke left and went to California. Wires got crossed (probably due to my brain fog) and I somehow didn't get transferred to the new doc taking her place, so I need to get in with another opthomologist so I can get back on plaquenil.
My PCP is willing to continue plaquenil & mobic for me, however won't prescribe anything stronger
than that for me. My problem was that either plaquenil wasn't as effective for me as it had been or I was getting worse, when I saw the NP and she bascially said I had nothing and I lost the plaquenil & mobic.

I am a bit gun-shy of doc's right now as I did go for the neuro consult, and the doc did not do an exam or essentially rule anything in or out, yet wanted me to see psychiatrist for somatization disorder! Unfortunately I live in rural southern Virginia and specialists are few and far between and healthcare in general is pretty poor. I had a long talk with PCP and she is not happy with what happened with Neuro either. I see her this Friday, so I am trying to decide what to do. Whether to pursue a new rheumatologist at Duke which of course will take ages to get in, or have her restart the plaquenil & other meds I was on.

So between the experience with the NP and the Neuro, I don't know if it is worth my energy (which I have very little of ) and time to risk ending up again with duds for medical practitioners. Getting spoken to like I am an idiot or a nut job isn't pleasant as I am sure many of you have experienced as well. I am so tired of this constant pain and sickness and not being able to get help for it !

Sassygal

[Velcro]

I know how frustrated you are.  When I get to that point with Doctors, I always ask myself, what are my options?  It always boils down to two.

1.  Give up on the Doctors and just feel bad and maybe even get worse.
2.  Keep trying until I find someone who will listen and help.

I always end up going with number 2 because even if it's frustrating, I might as well feel bad with the hope that someone with help than just sit around feeling bad and getting worse.  Hang in there and keep trying.

[SjoDry]

Seronegatives Unite!

Welcome to the often frustrated Sjoggies..who don't have positive bloodwork to support our Sjogren's journey. I think we have all lived the experience of being dismissed or invalidated by some of the physicians we have seen.

Advice from this board led me to find a Rheumy who did not believe in chasing bloodwork & lip biopsy results. She gave me Plaquenil, Salagen and Restasis. I had a great response within a short period of time.

As my multiple & constant symptoms have increased, I decided it was necessary to have a local Rheumy to follow me. I found a great doc who trained under Dr. Vivino & is working to start a Sjogren's Syndrome Clinic here in Pittsburgh.  My doc's perspective re: a Sjogren's diagnosis, is that if bloodwork is positive for Sjogren's, the patient has Sjogren's. But if the patient tests negative for Sjogren's..they most likely have an overlap of different autoimmune conditions.  At the end of the day..it's about treating symptoms.

I would continue the search for a new Rheumy. Don't know how far you are from any Sjogren's clinics, but sometimes the drive to a doc who is very knowledgeable about Sjogren's is worth it.

Good luck Ms. Sassygal
SjoDry

[Gingersnap]

I only have a positive ANA. Even when my joints are visibly swollen my sed rate usually stays within normal range. I have joint pain and swelling, chronic fevers, fatigue, painful parotids, achy muscles, terribly dry eyes, dry mouth, levido reticularis, raynauds, and I've gotten discoid rashes in the past. When I first went to a rheumy and had tests run, they called me and said the antibody tests, other than Ana, were all negative. I went to my follow up appointment fully expecting to be shown the door, but the Dr says no, I'm sure you have sjs, a lot of people with these diseases don't test positive for them. A huge part of me is so afraid of what will happen if I move, the practice I go to closes, etc. I pray that the ANA and my symptoms will be enough for another Dr too. I agree with everyone who has encouraged you to continue your search for a new rheumy. There ARE wonderful doctors out there who will listen to their patients and give treatment that works regardless of what a lab report says.

[litliwlowa]

Seronegatives Unite!

Now THAT sounds like an excellent lightbulb of an idea!!

[sassygal]

Thank you all for the support you have given me. To keep searching for a good rheumatologist is the advice I would give a friend in my situation, so I am grateful for my new friends here on this board!

After the Neuro looking at me like I was only a mental case, I guess my confidence got shook up a bit, but with all the encouragement from other seronegative sjoggies, "Sassygal" is getting her sass back!I will claim my membership in Seronegatives United!

I am glad to know others with similar symptoms that do not have elevated sed rates or crp too. Without those elevated, the docs aren't willing to acknowledge there is anything wrong, even though I know there is.

Best wishes to all,

sassygal

[deniselb]

I don't know about RF which i don't have, but after I had positive ANA and SSA tests my rheumatologist said she would most likely never run them again. She said they were useful only for making the diagnosis in conjunction with the symptoms, and whether the levels went up or down later on wouldn't change anything. I've heard a number of other people say they were told the same thing by their doctors. Antibody levels don't tell you how active your disease is.

An NP straight out of school replaced a rheumatologist? That doesn't sound right. I don't think an NP has the training to override a diagnosis made by a specialist physician.  A board-certified rheumatologist has five years of training after internship. God knows even then they often don't know enough about lots of diseases.

My CRP levels haven't been high. ESR sometimes is and sometimes isn't; no one is ever sure if it's from autoimmunity, allergy or infection. In any case, not having inflammation is a very good thing.

If Plaquenil helped before I'd try it again. If you respond, I think that in itself indicates that you have an autoimmune disease of some sort.