New to Sjogren's, need help!

Hi Tumtum,

If you don't mind, can you please let me know what number makes a high ESR, CRP, ANA, IgG and IgA? Which ones are markers for SS? I have dryness on my nose all the time but I was diagnosed with RA not SS. I feel congested all the time and the MTX does not help with the nasal swelling. I spray saline but it drys up almost instantly. Can you please tell me what you use for SS maybe my Rheumy can prescibe it to me. My Rheumotologist does not recommend a lip biopsy because he says its slow to heal. He says I don't have SS because I produce saliva on my own although when im congestion my throat also feels dry at times and it makes sense to me. Mind you, I've developed environmental allergies and he rules my nasal congestion and nasal dryness to that. Can it be allergies or SS?

Hi Tumtum, thank you for replying. When did you get symptoms? looks like the same mine started like MS they ruled out MS by doing MRI last year. I Don't have dry eyes, is it mandatory to have dry eyes with Sjogren's? Because I have almost fully dry mouth right now, dry throat even dry stomach, dry nose and ears. The 2 doctors were adamant about their decision. Like 100% not Sjogren. But the last dr she kind of hinted me that nothing would change if I got a diagnosis. She also said the Sjogren's levels can go up with other conditions but didn't specify which. SO I'mm here left out with a special needs child hopeless full of fears. This is what I got in my blood test Sjogrens Syndrome-B Extractable HI 5.6 (normal is<1) 

You might have been misdiagnosed with RA as I probably was seven years ago? Otherwise you could have secondary RA but Sjögren’s might be the worst disease for you. 

Most rheumatologist are ignorant about or  ignore SS systemic symptoms because, unlike RA, it’s an untreatable and much underestimated disease. You are better off with RA to be frank - it’s well known and well understood and they have ways of monitoring it. 

Mine is very like MS - and the RA is relapsing/ remitting non erosive type whereas the Sjögren’s has killed many of my small nerve fibres around my body ireversably. I use my hyloforte drops and organic coconut oil for my nose but when I get sores I use naseptin. 

My mouth appears only mildly dry but the dryness is at the back and affects my small nerve fibres so I’ve lost my sense of smell and taste now and it feels very dry to me. I use salivex pastels and oralieve gel. Nothing really works that well for nose and mouth but my eyes don’t feel too bad. 

No one believed I had Sjögren’s because my teeth aren’t rotten and my Schirmer s tear was normal. I relocated and the new rheum had me tested on the strength of symptoms abc the bloods I’ve mentioned. The ESR has now been replaced by PV and both have always been very high. My new rheum tells me that most with Sjögren’s have hyperviscocity and it’s therefore pointless testing it as it will always be high as our blood is very concentrated/ viscose. She goes more by CRP which is mildly elevated at 12- 14 usually and she says this is the RA/ infections etc. I’ve had allergies all my life and just come off my fifth DMARD, Cellcept/ Mycophenolate, in case it’s causing my  tremors. I won’t tske any more drugs although she asked me to retry MTX injections but I said no. I tried it for 2 years and it made me too sick. I think having Sjögren’s makes us very sensitive to toxicity and allergic to many things, particularly medicines. The lack of moisture means we don’t get rid of toxicity well and it’s the Sjögren’s MS symptoms and mast cell issues I fear more than synovial joint pain. Hope this explains. 

 

Ps forgot to say my lip biopsy was 100% positive despite lack of oral dryness and normal parotids. No lasting damage at all. 

Thank Tumtum. How long did it take you to heal from the biopsy? Are you sendative to sedation meds?

Thank tou for detailed reply. You know so much stuff. I have no idea about the medicine. I’ve always been allergic to any meds so I trued to avoid them mostly. I get all possible side effects. Hinestly this i’ve developed the mouth dryness since I was in my teens. But recently it has become worse. It all started last year after I got cold sorr and lump on my chin. After that everything went downhill. I noticed how my throat gets redder and swollen each day. Since February I’m having low grade fevers on and off. The symptoms coinside with worst diseases I dont want even to type. I’d rather have Sjogren’s than anything else. Right bow I’m going to get some lozenges as these swelling behind my tongue are killing me. 

You can have my Sjögren’s then and I’ll take something my chances on else! 

Christine, SS is a collection of symptoms and fortunately none of us get all of them. I am sorry to say that it often takes years to get diagnosed. Regarding the other things you fear, internet self-diagnosis is a terrible way to go because so much of the medical internet, such as Dr. Quack Quack Google, is 50-90% unreliable. This site is reliable and there are a few reliable American ones (tied to the best diagnostic facilities), but otherwise IMHO down that path lies massive anxiety, at best.

So perhaps it is best to assume you have SS & treat mouth & eyes correspondingly. Both areas require moisture & lack of same plays havoc. Find a good dry-mouth toothpaste & its rinse. This will not cure the issue but when used properly creates a healthier stasis for gums/teeth. Proper usage: floss, then brush w/soft bristled brush 2 mins, spit but do not rinse w/water. Rinse 1 minute with bottled rinse, vigorously. Do not eat or drink for 20-30 minutes. Some folks brush a lot longer but 2 mins x 2/day is what Americsn Dental Assn recommends.

Drink lots of clear liquids, as in 46-70 oz daily. If you're drinking water & your mouth becomes more dry with every sip, try chilling or heating the water. Herbal teas are fine except that some herbs such as mints are astringent. A tiny bit of honey helps. Sports drinks are great so long as they don't include oils and you can stand them . Their composition makes the liquid more bioavailable to our mucus membranes, as does chilling or heating plain water. If I drink them, it means things are very bad (or I've traveled up the road to dry dry Ft. Worth), and i mix the stuff with water.

Gum, lozenges & cough/throat drops will become your friends. Over time, lack of moisture leads to terrible gum disease & tooth loss.

Ditto for eyes: OTC drops such as Refresh Plus are where many of us start after eye doctors tell us we need them. And you should visit a good eye doctor. If you're in the States only go to an ophthalmologist as only they can write an Rx if needed. Lesser degrees seem much more helpful in the UK than here where all they do is vision checks & glasses.

2 drops in each eye up to 4 times daily was what my doc said, with last round right before bed. If more are needed every day for weeks on end, time to step up to a stronger drop. This of course assumes that your eye doc doesn't say something else. I also have a prescription drop for eye allergies.

What happened with your cold sore & chin lump? Only share if you want to. Daily cold sore treatments can play havoc with oral moisture per friends of mine with cold sores.

Please don't drive yourself crazy by continuing to look up symptoms. Major new health discoveries and diagnoses are not even a weekly or monthly event. If you can set a schedule to check no more frequently than once monthly, perhaps some of those fears will subside. Fear isn't good for our bodies in the long term.

Amen to all that, aitarg. Excellent advice.

I agree with you - I have had a month of internal tremors, 3 years of numb rigid face, loss of smell and compromised balance. Suddenly I put it all together and came up with Parkinson’s Disease. In the end I got so ill with worry as well as tremors that I phoned a PD charity helpline and spoke to someone. She calmly and kindly pointed me in direction of a charity neuro nurse who helped me sort it all out a lot. This person explained that it’s possible to have Parkinsonism rather than PD as a reaction to systemic illnesses and some medications. I needed her calm expertise rather than Dr Google/ Internet. I also needed some proper sleep and a beta blocker to get my hypertension plus autonomic neuropathy back under control.

If you are in UK you could try phoning the BSSA helpline? If elsewhere you could look up your local SS charity for good information and reliable advice. 

The thing about Sjögren’s is some people only get the glandular symptoms, others get severe Sicca but not much else, others get it secondary to another autoimmune disease, others again get horrifically swollen parotids and even non Hodgkins Lymphoma - others like me get it so it’s no different to MS but without the awareness or support.  

Sjogrens can’t easily be diagnosed and isn’t taken seriously enough by many in the medical profession as a systemic disease.

But if you already have a diagnosis of RA you are much better off just treating the RA systemically and Sicca topically and blaming the rest on established autoimmunity. RA can cause sore throat, dry mouth and low grade fever all by itself so I’m not sure why you are frightening yourself with other possibilities? Methotrexate won’t help your SS symptoms - it’s only for the joint problems. 

Hi tumtum, I don't want to muddy the waters even further, but I've noticed that you've mentioned a rigid face in two recent posts. Have you looked into the possibility of scleroderma, which is in the same connective-tissue group as SS?

I've recently got back in touch with a 70-year-old cousin (daughter of my mother's maternal first cousin) from whom I'd been more or less estranged for nearly 40 years. One of the first things she told me about herself was that she was diagnosed with scleroderma about 10 years ago, having had the symptoms for at least 10 years before that (same old same old...) I was intrigued to hear this, as I'd always suspected there was a strong hereditary element in autoimmune diseases. My mother, maternal uncle, grandmother and two great-aunts all suffered from RA and/or asthma and a variety of allergies.

One of the things she complains about is stiffness and rigidity of her face, and also her fingers - though it sounds to me as if the latter could be down to vasculitis as well, since she describes her fingers regularly turning purple. I don't know about her blood results, as she's the kind of person who never questions her doctors and prefers to know as little as possible about her illness. (So we're complete opposites!) However, as I understand it, the picture is fairly similar in SS, SLE and scleroderma, which can overlap.

Ditto the treatment, as far as I can make out, being largely symptom-based. This means, of course, that getting a diagnosis of scleroderma probably wouldn't make much difference to the management of your symptoms, but it might provide another piece of the jigsaw.

Thanks for amazing advice. I'll try to find to do what you said as it is humiliating to google and find scary symptoms.  I'm in my 30s. You asked me about the cold sore and chin lump. I developed a cold sore last year in march at the same time I developed lumpy like thing behind my molar on my chin. The cold sore got better after 2 weeks but I had a red patch and tingling for months on the same spot and  still sometimes get it. The chin lump felt hard and the dr prescribed fucidin cream to clear up. It took 2 weeks for the lump to disappear. But the same day I stopped using the cream the tingling spread on my chin. MY chin was a bit swollen. So from there it started. Tingling my jaw was numb for months and still sometimes it hurts and tingles. I don't know what happened but little by little my throat became sore, it hurt on the right side. Then I developed fullness in the right ear. And the list goes on. Sorry for detailed message. I want to figure out what happened to me and how it started all. Because my throat keeps on swelling. The lymphoid tissues are hypertrophied I have hard time to swallow and sleep. 

Hi Lily. In answer to your question - yes I’ve considered this possibility for a few years now. In fact ironically I’m under a connective tissue disease team who specialise in Scleroderma! And my ANA pattern is nucleolar which points more to this than Sjögren’s. But otherwise I am diagnosed with primary Sjögren’s or else RA with SS due to lip biopsy 100% and the vascular doctor says by now Scleroderma would have shown up in my lungs, heart  or kidneys or both and my nailfold capillaries were normal.

So even though I’m a very questioning and cynical soul - unlike your relative - I have to assume they are correct. But then again I’ve spent most of the past 7 years on DMARDs or steroids so who is to say that these haven’t been keeping it in check? They wouldn’t keep Sjögren’s in check but these drugs definitely mask things in my blood. And I do have stage 2 kidney disease which they say is just caused my hypertension but this only showed up when I was off DMARDs! So who knows. 

I panic sometimes that my rigid, numb face could be Parkinson’s Disease but then again they say that shows up to experts quite clearly and my neurologist is a PD expert. So ???? X

Could you also name couple of herbal teas that are good for dry mouth, throat? Besides camomile and ginger

Cinnamon apple, probably any apple tea, most berry teas or fruit teas, lemon-ginger combo ,,, am not at home, trying to think what's in my pantry. Honeybush, which like chamomile is a bit soporific. This is all I can think of now. Pear tea, or ginger-pear, is good.

The unsweetened flavored waters which I get, Hint brand, are more bioavailable when chilled than just my ultra-filtered cold water.

Wow, Christine, that is very troubling. I assume that you've looked up all the fucidin side effects? Here in the States I'd ask the pharmacist too as they sometimes have more detailed info.

We here are inured to rheumos blowing us off but I've not heard of ENTs dismissing folks with swallowing issues, sore throats and low grade fevers. Who first used the word hypertrophic, you or a doc?

The doctor said the lymphoid tissues I have at the back of the tongue are remnant from my tonsils that had been removed 12 years ago. Right now I saw another walk-in doctor for my swollen throat. He was puzzled, he says he has never seen such swollen glands in his life. He says I need to see an allergologist. He also suggested I might have Mikulicz Syndrmome which is very rare. I'm in despair...

I was just diagnosed with SS and lost smell with limited taste. Did you get you taste and smell back? If you did, how?

Thanks much!

Linda

I was justs diagnosed with SS my primary care doctor, waiting to see Rheumatologist. I also lost smell and taste with very dry burning mouth, dry nose and post nasal drip maybe caused by GERD.

I am afraid I will never get taste and smell back.

Linda