Hi everyone - sero negative Sjogrens

[Corella]

Hi everyone

Found this site yesterday so hoping for some advice if that is OK?

I initially had a raised ANA and CRP, which are now down to normal, but due to no tear production, was referred to an eye specialist who straight away said 'Sjogrens', my rheumy suspected it but said bloods were negative so just to wait and see (he had already dx Fibro), the eye doctor said he has seen lupus and sjogrens with negative bloods and to speak to the rheumy again.  I had my punctal plugs put in - just two so far, going to have the other side of my eyes done in two weeks, that has made a big difference.

Then last week I went to the dentist who said my salivary glands were not working and i had started to develop cavities - not happy as I have always had nice teeth but he is going to see me every 3 months to keep an eye on me.

The rheumy called me yesterday as I had to give him an update on stuff and he has diagnosed sero negative sjogrens, I have to be blood tested every 4 months and he reckons it will show up eventually.

So the eyes are being managed, the teeth are hopefully going to be managed, but the dry throat - sometimes when I try to talk or swallow, I feel like I am choking - is that normal? it is so scary.  When I breath in my lungs feel dry, but that could be my imagination, and my sinuses are bad.

My finger joints are really painful and if I walk too much I am so stiff, especially in the morning, I tried Celebrex as a painkiller but it brought on my asthma. So now I just take Mersyndol night strength as I cant take NSAIDS.

The rheumy has written to my GP to ask him to start me on Plaquenil and a short course of steroids, he has been pretty good actually, the first rheumy I saw made out as though I was making it up - whoever would have thought it would be so hard to get a diagnosis.

Have many of you taken Plaquenil before? I am going to give it a go as I get so tired and my joints hurt, if I go out in the sun that makes it even worse.

Although I am glad to have a name for this illness, I woke up this morning feeling quite scared - where to now? what does it all mean, how serious is it?  You know the kind of questions.

I had bronchitis a few months ago, I never get bronchitis, never had it in my life and now I am getting stuff like that - but one thing, I was on steroids and my pain vanished, so although I hate steroids with a passion from previous treatments, I am looking forward to not hurting.

Thanks for reading everyone, sorry its a bit garbled, my eyes are so blurry in the morning - I can barely read this back.

Corella.

[becky]

I have sjogrens.  My first positive ANA was in 1989.  Recently, my ANA was 1:1280 but the antibodies for sjogrens were negative.  However, my rehumy said that there is a large percentage of people with sjogrens who never have positive sjogrens antibodies.  He did not recommend me  having a biopsy as he is 95% sure, based on symptoms, that I do have sjogrens. 

I have so much trouble with my eyes.  They get so dry that the lids stick to the cornea and pull pieces of it off.  The only way I get relief is to use restasis twice a day, systane balance four times a day, and genteal gel at night.  I have been using restasis for 7 yrs now.   I tried the punctal plugs and they did nothing for me.

The dry mouth, throat, nasal passages are another problem.  I recently bought some lozgens with Xylitol that I use at night.  They have a kinda rough side that sticks to the inside of your cheek so you don't swallow or choke on them.  My dentist told me to chew gum and use products (like biotene) that have xylitol in them to reduce the chances of cavities.  My dentist also put me on a prescription strength nightly flouride treatment. 

As for the nasal passages, I am using a prescription ointment from an ENT.  It also helps a lot. 

Don't think there is much more you can do.  Guess if it gets bad enough - there might be more drastic treatments.

Hope this helps a little.

[Corella]

Thank yo so much for replying.

the dry throat/airways is awful, you think because you have a bit of saliva that you are not dry then you try and talk and its like you are choking.

I love my plugs, he is going to put two more in - my eyes are still dry but it makes a difference.  Do you get a rash on your cheeks if you go out in the sun? I do and its awful, it comes and goes.

[becky]

Yep.  I've had the rash for years.  I've been diagnosed with roseacea in the past but not sure that's what it is.  Me and the sun do not get along at all.

My Dr. is continuing to test me also for Lupus.  He said I tested negative so far but that doesn't mean I don't have it because Lupus can go into remission and it's sometimes hard to get a definite diagnosis.

Glad the plugs are helping.  Mine felt better for a few days but would not stay in.  They just went on through.  Tried 4 different pairs.

[Corella]

He has offered to cauterise them in if they fall out, I will ask him to do that anyway that way I dont have to worry.  Its an expensive business though $400 AUD for two plugs.

The symptoms seem to be very similar to Lupus, I wonder if Sjogrens can affect your kidneys like lupus? My GFR kidney results were only mildly reduced.

My appetite isnt brilliant either but the hardest thing for me is drinking water, I have never been a big water drinker at all, rarely feel thirsty and now I have no choice and its so hard to drink the required amount.  I do believe I wont be able to drink alcohol on the plaquenil anyway, so I guess that is a good thing. (well not really but whatever is best!)

[Suzie]

Hi,

It's awful having to deal with these symptoms, but I'm sero-neg too and my problems are made so much worse by my doctors not believing in sero-neg Sjogrens and therefore denying me treatment. I know you probably don't feel it, but I think you're really lucky to be taken seriously by your doc.

I wish you moist eyes, a comfortable mouth, well-oiled joints and bags of energy!

Suzie

[Corella]

Oh the first Rheumy said 'fibro and you need to go to the gym and work through the pain'

The second Rheumy - my current one, said 'its sleep deprivation, I recommend a sleep study' now dont get me wrong, he is a nice man, but it was only when the eye specialist and the dentist both said 'sjogrens' that he said he agreed, in his favour he did say I could develop sjogrens symptoms in years to come.

I do feel lucky to start treatment though but one thing I am totally horrified at is being dry 'down below' - what is that all about??? I can cope with dry lungs and stuff but a dry beaver is not my idea of fun.

I am nervous of taking plaquenil - but I will give it a good go.

Sorry to hear your doc doesnt believe in Sero neg, is it an option to change Rheumy's?  I had a 4 month wait list to see an urgent private one in Perth, its shocking.

[Meleke]

Corella  it's not that bad but it does affect that down there.  there are days that you never notice it then there are days you wished you never did it.  just keep some lubricant close in case. you will be fine. i dono how old you are but i didn't have issues till these last 2 yrs I'm 41. but it's not that bad really.  I don't like it much either but hubby is away a lot so it don't bother me as much.  kinda like if ya don't use it ya don't miss it.....  hope i didn't offend anyone wasn't meant to but i have a tendency to say whats on my mind..

[Carolina]

Welcome Corella,

You're in the right place, as far as I'm concerned.

It would help if you listed  diagnoses, symptoms, and medications.  It's in the signature line (you can see mine).

Are you taking anything for saliva production?  Evoxac, Salagen (and pilocarpine which is the generic Salagen) are the drugs for saliva production.  I couldn't survive without it.

Think about having a humidifier in your room.

I use a saline nasal spray, too, to help my nasal passages since they are so dry.
I use Simply Saline morning and night.  Also RX Nasonex to reduce the post nasal drip which is so thick and blocks my nose at night.  That makes me breathe through my mouth which turns it to sandpaper. 

I used eye spray at night when I get up to pee.  I have interstitial cystitis (IC) which is an inflammatory condition of my bladder (goes with Sjogren's very often).

Of course I drink a lot for the dryness and pee a lot because my bladder is irritable.  Take about a vicious cycle!

I have NEVER ever tested positive for any autoimmune condition, Corella.

So my dryness is called Sicca, which is Latin for 'Dry'.

There aren't a lot of drugs for Sjogren's and the ones there (Plaquinel, which is a drug for malaria, and chemotherapy drugs like Methotrexate) don't stop the condition or cure it.  But they do help for many.   Also Prednisone, which will stop any sort of inflammation, and therefore the pain and misery that goes with it, but doesn't cure anything either.  They are necessary and gratefully taken by many sufferers.  But they have their own set of side effects, of course.

Hang in there, and look for all the tips and ideas you'll get here.

Many of us are sero-negative, or as I like to say 'sero-normal'.   

Again, welcome.

Keep us posted.

Hugs.

Elaine

[Meld256]

Hi Corella,

Let me Welcome you to Sjogren's World!   

You've come to the right place for advice, support, encouragement and knowledge. There's loads of information here and many wonderful and caring people.
Carolina gave some great tips, and you might want to ask your Rheumy about meds for saliva production.

That said, I can tell you there is life after diagnosis.  Now you know why you have all these symptoms, and are taking action. Thank goodness you found a good Rheumy and have a proactive dentist and eye doctor.  Those 3 can work together to help you!

I have no blood work to support my Sjogren's diagnosis, either. My first Rheumy told me the same: just Fibro. and to get exercise.  I wondered how I could do that when I could hardly move. So why were my eyes so dry, joints hurt, cavities, and sinus and gland infections?  It took my eye doc and a good PCP to figure it out.

Plaquenil and a short course of steroids should help a lot.  That's a common and very helpful start. 

I think many of us when first diagnosed feel relieved we know what it is, then some fear sets in, just as you say.  We all wonder what we happen, where does this lead?  It can be frightening. 
We learn to take one day at a time.  With treatment you should feel much better.  You may never have any other symptoms than you do now, and they can be managed. 

Remember you are not alone.  We will be with you on your journey, and we care.  Ask anything you like, and keep posting.  We're kind of like family around here.
Take care and we look forward to hearing more from you.

Melinda

[Scottietottie]

Hi Corella 

Welcome to Sjogren's world. I was dxd with SjS in 2004 but this year I've been told I don't have it because of negative bloodwork. My new rheumy wrote to my GP, however, and said the the dx criteria has changed since 2004 which is why I prolly got a dx then. I was prescribed Plaquenil and I have found it helps and the rheumy recommends that I stay on it, use eye drops and also saliva inducing pastilles that have been prescribed. He also intends to see me once a year and more often if things flare up.

He suggested that without the bloodwork it is not Primary Sjogren's but SjS symptoms secondary to something else. He said there is too much doctors just don't know yet.

I hope you find the site useful.

Take care - Scottie 

[Corella]

Thank you all so much for your replies, they mean a lot.

The symptoms I have had and still have are so odd, I shall list them and hope you dont think me too mad as some of them dont make sense.

1. Dizziness - it is odd as it is when I am in bed, early hours of the morning and my head feels tight, I often get a tingly feeling down one side of my face.

2. Heavy/exceptionally weak feeling - this is awful and again is early hours of the morning, as though my body is so heavy and weak that there is nothing to support it.

3. Finger joint pains - tight pains on my finger joints and now my feet - my feet really hurt on the bone on the sides.

4. Stiff joints - first thing in the morning it takes me ages to loosen up.

5. Brain fog - what is that all about? my short term memory is awful.

6. Dryness - I am 44, but told I am not in the menopause, but my lungs/mouth/eyes/nose are so dry and frequently down below.  I get sharp pains in my lungs when I take a deep breath in sometimes.

7. Irregular heart beat or missed heartbeats that never show up when a doctor listens to my heart.

8. Reaction to vaccines and insect bites - if I am bitten by a mozzie or any insect the area swells up and the redness spreads a good 6 inches either side.

9. Tiredness - that lead blanket feeling.

10. Hair loss - my hair has gone dry/brittle and I lose heaps in the shower - thyroid came back normal.

11. My nails have developed ridges on them which looks awful

12. Metallic/salty taste in mouth.

13. Total intolerance to the sun - I will pay for any sun exposure for days after - sick/dizzy/tired

These symptoms make me sound like a right hypochondriac but I am not, honestly.

My vitamin D levels are very low, I cannot sustain them - I have to be tested twice a year and take supplements, I also take Omega 3 fish oils - two capsules a day and Biotin for my hair/nails and a Calcium tablet as well as my joints are very crackly and stiff.

When I go to the gym, I can barely walk the next day.

For my eyes I use Polytears during the day or Systane Ultra and at night I use Viscotears which are quite good, I get the next set of plugs put in soon.

In two weeks I start the Plaquenil and a course of dexamethasone as I am intolerant to preds - they make me quite aggressive, awful drug and I am a bit better on Dex.

I feel quite down today actually, I keep getting paranoid my husband will get fed up with it all - do any of you feel like that ever?

Thanks again for taking the time to reply.

[Narablueeyes]

Corella:  I feel quite down today actually, I keep getting paranoid my husband will get fed up with it all - do any of you feel like that ever?

Nara:  oh h*LL yes!!!  I was talking to hubby on the phone this afternoon and I said, "I want to ask you something."

He said, "okay, shoot."

"I'm trying to find out what's going on with me and I'm really trying to fight the fatigue and the pain and I know it doesn't always work out like I want it.  I'm afraid you're going to leave me.  Are you getting tired of all this?"

(now please realize this man is constantly trying to make me laugh and his sense of humor can be weird but don't make anything more out of it than just him trying to be funny.)

He said, "H*LL yeah I'm getting tired of it!!" I giggled and he said, "where would I go?"

I said, "you could go back to your ex-wife (who would still take him back for some reason)."

He said, "I'd rather jump off a bridge!  Seriously, that's not an option. And who else would put up with my dancing and my farts??  I still think I could be a strong contender on Dancing With The Stars ya know!  Well if I could just not fart ever time I walk."

I couldn't help but bust a gut laughing!

He said, "I know you're trying.  It's not your fault this is happening." And the discussion was over.

I say talk to your husband and tell him your concerns and fears.  See if you can get him to open up about his.

I was looking at the the "I'm thankful for..." thread early and was having a hard time coming up with something cuz this pain is just so durn intrusive.  But I think I just figured out what I'm really thankful for.  Sometimes I don't feel like I deserve him but I'm so glad he loves me!

[Suzie]

Corella, you total sweetheart, YOU AREN'T NUTS AT ALL!
You describe symptoms that most of us have at one time or another and are Sjogren's symptoms, as well as symptoms of most auto-immune illnesses.

As lucky, lucky Scottie's amazing doctor told her, "there's too much doctor's just don't know yet". Scottie, you should have that engraved on a brass plaque along with the date and location of when an actual medical doctor admitted such a thing!

I went to see a Prof of Rheumatoogy on Sunday, and for once my appointment co-incided with a dreadful flare up of my dizzy-vertigo-stomach achy-pukey-joint pain-headache-desert dry eyes-weakness and very yellow complexion episodes. Usually I have to go when I look all pink and healthy.

Anyhow, since he does research and publishes (didn't get to be a professor for nothing) he was wonderful to me. Fascinated by by symptoms, disease progression and normal blood work. Said I was obviously sick and suffering and doctors were generally full of crap and scared  by what they don't know (yep, that's getting etched in bronze for my wall right now).

He thinks my immune system is attacking my Autonomic Nervous System. He said it's hard to catch in regular rhuemy tests. He's going to do a CD4:CD8 blood test, which is a type of white blood cell test they do on AIDS patients. In them, levels are very low. He reckons mine will be very high.

We'll see. If my levels are high, he'll need to give me a chemotherapy drug to knock them down. Kinda scary idea, but at this point I'LL TRY ANYTHING.

My husband is totally fed up with this situation, but what can we do to change things? When I'm feeling less awful, I lavish love and attention on him. It has to do.

Suzie

[Diane54]

I am sero negative also, but just lucky that I HAD  a good primary doctor that believed I needed treatment with a Rheumatologist asap! My Ophtamologist told me right off the bat he thought I has Sjogrens from my Shirmer test. I just wished Venus Williams would step up to the plate and make some PSA about the disease. People don't understand how debilitating this disease is!