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Sjogrens Topics => Living With Sjogren's => Topic started by: kikil on December 01, 2014, 09:21:47 AM

Title: NOT Sjogren's after all...
Post by: kikil on December 01, 2014, 09:21:47 AM
The rheumatologist just phoned to inform me that I do not have Sjogren's because all of the tests were negative. (Blood tests and those nasty Schirmer's and saliva tests).

Great, that makes me healthy, right?

Let's see...rheumatism...eye doctor's diagnosis of dry's observation of dry mouth...and anyway I wake up every thirty minutes for a drink of water through the night because my tongue is glued to the roof of my mouth, so even I can say that is a dry mouth.

Also: dry ears, dry nose, blepharitis, and regular eye infections.

(I still do not understand what the point of the Schirmer's test is. The woman nearly poked my eyes out and stuck paper to the dry surface about ten times before it stuck. Is it any wonder that there were tears after that?)

Guess that means I do not really belong here.

Title: Re: NOT Sjogren's after all...
Post by: Kathy57 on December 01, 2014, 09:30:21 AM
I don't take much stock in blood tests.  From what I understand, there is no correlation between severity and positive blood tests.  I think you are sick because your symptoms speak louder than your "tests."  Find a Dr. Who will treat YOU and NOT your blood work. 

Unfortunately that is easier said than done.

Hope you get some relief and help soon

Title: Re: NOT Sjogren's after all...
Post by: sarahjane on December 01, 2014, 09:43:08 AM
I second getting another opinion. I'm one of many on this board that is TOTALLY sero negative for all bloodwork and lip biopsy. I'm very lucky that my rheumy has given me the diagnosis following confirmation of neuropathy and autoimmune thyroiditis and I'm being treated accordingly. Please seek another opinion and no need to leave us!
Title: Re: NOT Sjogren's after all...
Post by: oliverid5 on December 01, 2014, 09:46:58 AM
kikil:  Have you read:

I had the diagnosis for 1-1/2 years, tried switching to a new rheumy who said I did not have Sjogren's based on blood work and was forced to get a lip biopsy that confirmed diagnosis.  It just seems to all depend on what doctor you see whether or not they will be able to correctly diagnosis you.  Don't give one knows your body and symptoms better than you.  Find another rheumy.

I always thought it would be nice if a doctor could live with me for a week and see what I go through.  How can they tell what you are truly feeling when they only give you 10 minutes of their time every few months.  And, when you tell them your current symptoms, they just shrug and say to try physical therapy.  Really???
Title: Re: NOT Sjogren's after all...
Post by: Carolina on December 01, 2014, 10:08:42 AM
Dear KiKii,

There is a condition called SICCA which means dry: dry eyes and dry mouth  It is treated exactly like Sjogren's at the entry level:  Salagen/Pilocarpine or Evoxac/cevimeline hcl for mouth and eyes (oral medication) and eye drops for your eyes.

There are no blood markers for Sicca.

And of course, as many here can tell you, symptoms of all sorts can appear and go on and on and on, long before blood markers appear, if ever.

So be patient, find the doctor who will treat YOU and YOUR symptoms, and not your blood work. 

Many doctors want only to treat people who are easy to understand, have clear markers and respond well to all medications.  There are a lucky few.

Most of the rest of us shop around until we get what we need.  We never get what we want of course, which is absolute perfection and compete absence of pain (joke!)

You are here if you think you can get help from us and enjoy our company.  Welcome.

Hugs,  Elaine
Title: Re: NOT Sjogren's after all...
Post by: Joe S. on December 01, 2014, 11:56:39 AM
Sicca syndrome: An autoimmune disease, also known as Sjogren syndrome, that classically combines dry eyes, dry mouth, and another disease of connective tissue such as rheumatoid arthritis (most common), lupus, scleroderma or polymyositis.

I was told they were on in the same. A lot of us do not have blood markers.
Title: Re: NOT Sjogren's after all...
Post by: kikil on December 01, 2014, 12:39:19 PM
Thanks everyone! This rheumatologist is the one who diagnosed my RA 5 yrs ago. I have had a good relationship with him, and he knows that was seronegative.

I have an appointment to see him on Wednesday and maybe I can have him take a look with me at the dx criteria for secondary Sjogren's.
Title: Re: NOT Sjogren's after all...
Post by: cccourt1942 on December 01, 2014, 03:56:05 PM
Sicca "syndrome" is not an autoimmune disease.  It is a symptom.  However, MANY doctors (and I would venture to say all GOOD doctors) will treat these symptoms the same as SjS.  Taking info from this forum apparently the diagnosis of SjS is not necessary for all insurance companies.  I do not KNOW this nor have I heard anyone declare it, but those applying for disability for Sicca symptoms (alone) would have difficulty being declared disabled.  Let me repeat: I do not KNOW that.  I do know sicca is a symptom. (and a miserable one!)  If you found this forum you are part of about 99% of us suffering with it who come here!
Title: Re: NOT Sjogren's after all...
Post by: Jasper on December 01, 2014, 04:56:25 PM
I agree with the others that one can have Sjogren's without having positive blood work.

I have had Sjogren's symptoms for decades, yet my blood work was negative for SS-A and SS-B in January 2012. (It was positive for ANA.) My Dermatologist at the time and my PCP  both said that I was fine and that I did not have an Autoimmune Disorder and needed no further testing,  even though I had many symptoms of Autoimmune Disorders.

In July 2013 I got to a Rheumatologist on my own. She did a truck load of tests and I was positive for SS-A at that time.

Perhaps you have just not converted to positive tests yet or perhaps there is some other reason you are negative for Sjogren's tests (as some others are).

Hopefully your Rheumatologist will treat your symptoms.
Title: Re: NOT Sjogren's after all...
Post by: Nugget on December 01, 2014, 06:24:44 PM
I always thought it would be nice if a doctor could live with me for a week and see what I go through.  How can they tell what you are truly feeling when they only give you 10 minutes of their time every few months.  And, when you tell them your current symptoms, they just shrug and say to try physical therapy.  Really???

Well said.
Title: Re: NOT Sjogren's after all...
Post by: Head2Toe on December 01, 2014, 06:55:38 PM
I feel your pain. 

I've told my husband several times over the past year:  If we win the lottery, the first thing I'm going to do is hire a doctor who will give me his/her exclusive and undivided attention to find out what's wrong with me - and - identify the best possible treatment.

Title: Re: NOT Sjogren's after all...
Post by: grammad97 on December 01, 2014, 06:57:08 PM
Hello kikil -
Please remember you the patient pay for the doctor's time and expertise.
Definitely advocate for yourself to get your symptoms treated. As the others have said many have symptoms but no positive labs.
It is frustrating to have to repeatedly explain your symptoms to a doctor.
Can your dentist and ophthalmologist send their observations and diagnosis to your doctor?
Don't give up! We are here to share information and give you a place to ask questions , vent whatever.
Breathe and hang in there.
Title: Re: NOT Sjogren's after all...
Post by: kikil on December 01, 2014, 08:50:07 PM
I appreciate your comments so much, as it helps me to not feel quite so alone with this.

Actually, this is not the first time that I have had to advocate for myself with doctors (the same with asthma, epilepsy, hiatal hernias).

grmmad97: The eye doctor is in the same health clinic as the rheumatologist, and he can see the official diagnosis on his computer. I can even log in and see myself that it says 'Dry Eye Syndrome' / Sicca, so I know he can.

I believe I have a case for secondary Sjogren's, according to the Finnish criteria: 1. an autoimmmune disease (RA) 2. either dry mouth or dry eye symptoms and 3. one other 'objective' test, which could be an eye dr. exam using dye. (No need for positive blood tests, saliva tests, or poking paper in the eye tests.)

What the dr. told me about treatment: Use eye drops and chew gum. This dr. has always been very kind to me and listened to me before, so I will try to give him leeway here. I will come to the appointment tomorrow prepared and be thankful for the Finnish friend I found here who passed on the link to the Finnish criteria.

In any case, my GP ALWAYS takes my concerns seriously, no matter whether trivial or big ones, so I will keep on until this is taken care of. I'm not even seeking disability, just proper care.

Thanks again for your support!
Title: Re: NOT Sjogren's after all...
Post by: gurs on December 02, 2014, 04:26:31 AM
NO, NO, it doesn't mean you don't have sjogrens. To me, all those tests are useless. Seriously!! just find another doc who will treat you according to your symptoms. Labs can change from minute to minute, and they just don't know enough about autoimmune..bottom line.
Don't give up your quest..i know its frustrating.

Title: Re: NOT Sjogren's after all...
Post by: kikil on December 03, 2014, 10:02:17 AM
At the appointment today, I asked the rheumatologist whether he thought it could be secondary Sjogren's. I brought with me a printout of the Finnish description. He said I did not fit the criteria.

In his opinion, I have neither dry eye (failed the Schirmer's test) nor dry mouth (failed the saliva test), so the symptoms do not count. Grit in the eyes, cotton mouth, etc. are not counted. He said he could order the lip biopsy, but I said no to that.

He does think there is a problem, so he has ordered more blood tests, including blood sugar and others. They will also do an ultrasound to check for thyroid or lymph node issues.

For now I have to accept that it does not qualify as Sjogren's in his book. Either A) the symptoms will go away (not likely) or B) the symptoms will get worse and I will be knocking on his door every time there is a flare.


P.S. You all know how frustrating all of this is; on top of all that, I get to do the whole thing--reading the criteria, discussing with the doctor and lab attendants, etc-- in Finnish (not my mother tongue). 'Dry mouth' is 'kuiva suu', and 'dry eyes' are 'kuivat silmät' in Finnish, so it is not the easiest to manage describing symptoms or understanding lab paperwork, even if I would not be so sick!
Title: Re: NOT Sjogren's after all...
Post by: MAT51 on December 03, 2014, 11:43:52 AM
Hi - I too have a diagnosis of RA and have many symptoms of SS despite negative blood work for SS antibodies. My rheumy will only acknowledge the Sicca and will not take on board the reason I have severe small fibre neuropathy, nose bleeds from dry nose, foul taste and upper abdominal problems and an ESR of 55 just now. He is only interested in my joints - which despite being RA drug free for five months (I'm horribly intolerant of drugs - failed three dmards to date) are fine in terms of swelling these days. I would swap joint pain and swelling for this terrible nerve pain any day. All this sitting on the fence just because my bloods are negative for Ro and La. Sjogren's has never been mentioned - GPs seem to think it only comes in secondary form and I've never even been offered a lip biopsy.

I'm now seeing a neurologist whom I hope may be more discerning. My GP is actually great and says he's sure I have Sjogren's but I just don't think any of my medical team know much about it beyond Sicca.

I also saw a professor of connective tissue diseases in April and he just said Sicca with Raynauds (now re-diagnosed as small fiber neuropathy) as part of my RA and told me these things would only ever be a serious nuisance - were relatively benign - but the RA drugs wouldn't help them at all and I just have to learn to manage them. It was the RA that the Methotrexate was being taken for at the time and RA that could do serious damage if it returns -  but he said these other CT symptoms would not be helped by MTX. So how come it all got much worse when I stopped MTX then and how come the SFN is so advanced now? The neurologist described it as progressive so I'm losing sensation and simultaneously in great pain a lot of the time - so frustrating!
Title: Re: NOT Sjogren's after all...
Post by: kikil on December 03, 2014, 03:16:07 PM
 Ouch! @MAT51 Your neuropathy sounds incredibly painful. Did you say the professor's opinion was that your RA meds might exacerbate the sicca? That hadn't occured to me. Have you not been given anything for the SFN?

I'd love to quit taking the RA medication (Arava), but the rheumatologist keeps reminding me of how much joint pain there is every time I have stopped.

Actually, I don't see why my rheumy does not even think it is secondary Sjogren's in my case. Now it seems he is doing such a wide range of tests...everything form B16 or D vitamin deficiencies to diabetes to thyroid or lymph problems.

So that leaves me asking what else could be causing these symptoms?
Title: Re: NOT Sjogren's after all...
Post by: MAT51 on December 03, 2014, 03:28:30 PM
Well you are lucky that your rheumy is checking for all these things now at least. Mine never checks my B12 or vitamin D although the GP has checked and the neurologist ruled out diabetes and B12 deficiency and my hypothyroidism is well controlled with Levothyroxine apparently. So, like yourself I'm wondering what could be causing my relentless small fiber neuropathy etc and only thing left that flags up for all these symptoms is Sjogren's. If we can have sero negative RA then surely we can have sero negative Sjogren's? 

I guess there's so much overlap that it takes them a long time to sort out what is causing what. The professor confirmed that I certainly had autoimmunity and that the diagnosis of RA three years ago was robust. He said the Sicca and Raynauds (not!) would just come and go and were not treatable apart from topically or with a vasodilator drug. I was on Methotrexate and Nifedipine when he saw me but had to stop both because of reactions. All my symptoms point to Sjogren's and yet because I have a confirmed diagnosis of RA they will only treat me if it comes back in as synovial swelling. Perhaps it would be different if I had a diagnosis of Sjogren's and I would be able to try immunesuppressant meds again but I'm so intolerant of drugs that they are very wary now. I'm just taking Naproxen and Duloxetine for the time being and await further neurology tests. I don't think my rheumy will be interested until/ if I present with synovial swelling once more though. It is so frustrating but the Naproxen seems to be working well on the nerve pain which I guess shows it must be inflammtory in origin at least.

I never had the Schirmer's test but my optometrist has done a tear break up test and says they are pathologically dry. Not sure which is the most efficient way to detect Sicca but he told me that Schirmer's has been superseded by tear break up nowadays.
Title: Re: NOT Sjogren's after all...
Post by: kikil on December 04, 2014, 11:06:11 PM
Thank you Mat51.

I have had vitamin B12 deficiency in the past, so that is possible again. The diabetes check has to do with me having to use the toilet frequently and being thirsty all the time, especially at night, and having night sweats.

You are right about the sero negative Sjogren's. What I found out yesterday from my dr. friend, is that if one has got RA or other autoimmune disorder first, then (Sjogren's) symptoms like sicca are considered to be symptoms of the RA and not diagnosed as Sjogren's.

I'm not sure what the tear break up test is, but apparently it's not used by my rheumy.

Because I have so much pain without the RA med, he has discourged me from ceasing that, although I do not like the side effects: frequent infections of all kinds, hair loss, and probably others.

Thank you!!

Title: Re: NOT Sjogren's after all...
Post by: MAT51 on December 04, 2014, 11:20:57 PM
And thank-you in return Kikil for confirming that the sicca et al goes under our RA diagnosis rather than being seen as some separate autoimmunity as I had been told.

What I still don't really understand is whether it's possible for the RA to come as a sub-heading to the Sjogren's at all i.e the other way round. For me my Sjogren's symptoms seem more severe than my RA ones have been and yet I was told that they would only ever just be a nuisance and it was the RA/ synovial swelling and pain that should be the focus of drugs etc. Over five months after stopping Methotrexate injections (side effects were worse than the disease) I find that although I've been pretty ill, I haven't yet had a return of the severe joint pain and swelling in my hands. Other times when I stopped it over three years, or tried other DMARDs, the pain and swelling came back pretty fast as you describe happens to you and other RA friends. I wonder whether, in my case, the disease has morphed into some other autoimmunity such as primary Sjogren's now - or whether SSJ was my main autoimmune problem from the start and the RA was just a sideways step. I will ask my rheumy this next time I see him - hopefully in January. Mat
Title: Re: NOT Sjogren's after all...
Post by: kikil on December 05, 2014, 09:08:27 AM
MAT51 According to my dr. friend, some have the RA first, and some have the Sjogren's first, so you are right, of course.

At first, they gave me Methotrexate, but it caused me to puff up like a balloon (water retention all over), so I was switched to Arava (which have their own side effects, though of a whole different type).

Basically, the Arava suppresses my immune system and I end up catching infections of all kinds. When on antibiotics, I have to stop the Arava. Then the joint pain comes back, so I start taking the Arava again. (Endless circle) My friend suggests I could strengthen my immune system with homeopathy, but I think if my immune system has to be suppressed with Arava, that might be counterproductive.

Does anyone else feel that they are on this kind of endless cycle?
Title: Re: NOT Sjogren's after all...
Post by: MAT51 on December 05, 2014, 09:19:08 AM
Thanks for this. I've tried Sulfasalazine, Methotrexate oral and injection and Hydroxychloraquine over three and a half years. MTX Was the drug credited with squashing my RA as I was on it for two years - but finally sickness both ends and foul taste became too much for me. I'm based in Scotland and have been told that if it comes back in my hands as it was when I was diagnosed I will be offered a biologic drug. I don't know where my RA has gone but unfortunately the neuro symptoms and treatments are even worse to me than RA. My overactive system seems to need suppressing badly but Arava/ Leflunomide is not a drug my GP favours for me with my particular symptoms - unless the synovitis returns.

I don't think people who suggest homeopathy for systemic inflammatory diseases know how harmful these diseases can actually be to sufferers. It is a gamble really but not one I would risk yet.
Title: Re: NOT Sjogren's after all...
Post by: Carolina on December 05, 2014, 09:45:04 AM
Endless Cycle!

That's me.  I thought I was through getting new things.....

But now I have this special horrible sort of acid reflux, which goes up to my sinuses and gives me headaches, hoarseness and sore throats.

Now this doesn't sound like a big deal compared to what you're dealing with kikil.

But I already have a host of issues, and did not want one more.  Especially one that seems to require me to eat almost nothing I like.

So I'm whining.

Yes, count me in to the endless cycle.

Hugs,  Elaine
Title: Re: NOT Sjogren's after all...
Post by: eija on December 05, 2014, 05:40:47 PM
And thank-you in return Kikil for confirming that the sicca et al goes under our RA diagnosis rather than being seen as some separate autoimmunity as I had been told.

MAT51, I think you've been told correctly. I can't find anywhere that Sjögren's would not be a separate diagnosis if it occurs with RA. On the opposite, it says everywhere, that with another autoimmune disease, like RA or lupus, it's secondary Sjögren's.

Other signs and symptoms that can occur in RA include:
  • Loss of energy
  • Low fevers
  • Loss of appetite
  • Dry eyes and mouth from a related health  problem, Sjogren's  syndrome (
    ( (

Sjogren’s Syndrome. Approximately 10 to 15% of patients with rheumatoid arthritis develop Sjogren’s syndrome (, a chronic inflammatory disorder characterized by lymphocytic infiltration of lacrimal and salivary glands.
( (

Sjögren’s syndrome is classified as either primary or secondary. Both are systemic diseases, meaning they can affect many systems in the body, and they occur with about equal frequency. The primary form causes early and gradually progressive decreased function in the lacrimal and salivary glands, and can include a variety of extraglandular conditions. The secondary form occurs in people who already have another autoimmune connective tissue disease, most commonly rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE). These people then develop dry eyes or dry mouth.
( (

Sjögren’s syndrome is classified as either primary or secondary. The secondary form is diagnosed in people who already have another autoimmune disease such as systemic lupus erythmatosus or rheumatoid arthritis. Sjögren’s syndrome cases are fairly equally divided between primary and secondary.
( (

And yes, it's an endless cycle. And I've had enough of it. Can I get out, please? :P

Title: Re: NOT Sjogren's after all...
Post by: MAT51 on December 06, 2014, 12:13:35 AM
Ha ha yes I'm with you -"beam me up Scottie!". Thanks very much for all your quotes. What I still fail to understand is why my small fibre neuropathy seems much more severe more than any joint pain/swelling and has done for about 2 years now. My Sicca is manageable with drops and ointment  to date and i think primary Sjogrens is much worse. So I am thinking my severe SNF must be part of the neuro side of RA/ Sjogrens.

But I read up last night -

- and it seems that SFN with RA is best treated with steroids and symptomatically ie not with IVIg usually. Steroids make me bipolar and so far I've struggled with two anti-depressant nerve drugs and am now struggling with a 3rd. So not sure where that puts me now really as I've failed to tolerate three DMARDs to date as well. Sorry I've hijacked your thread a bit but on the very plus side I'm getting more sleep and am relatively pain free since taking the NSAID Naproxen so much more cheerful for that!
Title: Re: NOT Sjogren's after all...
Post by: kikil on December 06, 2014, 05:04:52 AM
I agree with all of you. I think MAT51 means that secondary SS is often not diagnosed (not that it is supposed to be that way, but just that it happens). Thanks to Eija for the quotes.

In the end, maybe I don't tick enough boxes to get a REAL diagnosis of SS, but the rheumy cannot deny I have the symptoms. My eyes and mouth are just not dry eNough, and my blood does not cooperate. The eye doctor's diagnosis says sicca, and that has to be taken care of. The dentist is taking care of the dry mouth care.

Now the rheumy has to figure out what to do with the other symptoms (excessive thirst etc.) that don't fit under any handy RA boxes.

MAT51 That is great that Naproxen is providing pain relief for you!! It is not always easy to find the right one.
Title: Re: NOT Sjogren's after all...
Post by: MAT51 on December 06, 2014, 08:11:17 AM
At the end of the day the reason it matters for both of us that SS is formally acknowledged by our rheumies is because it might affect the treatment options available to us as people with a broader RA. Many of those I know with RA have Sicca but very few have the severe small fiber neuropathy or vestibular issues or gastric issues or non sweating, loss of taste and smell senses that I have. If I'm treated forever as someone with relatively mild, non-erosive RA then I may just have to put up with my peripheral nervous system getting progressively worse. For me this is certainly why it does matter and I think perhaps you feel similarly Kikil. Mat x
Title: Re: NOT Sjogren's after all...
Post by: kikil on December 06, 2014, 08:49:06 AM
Yes, MAT51, those are the scary bits. Luckily, I haven't got the neuropathy (yet) or other similar symptoms, but of course that may change in the future. Let's hope our physicians will recognize those important points.

Meanwhile, some of the bloodwork came back. I have less than half of the minimum level for vitamin d, and my vitamin b12 is at the minimum. Now there is something that could make a difference in a lot of health issues.

Hang in there! -Kikil
Title: Re: NOT Sjogren's after all...
Post by: MAT51 on December 06, 2014, 08:57:47 AM
Yes in your case this does sound like you may have cracked it Kikil - Vit D deficiency counts for a lot. Mine was 28 at the end of the summer a year ago and I found this out myself having had D deficiency dismissed by both GP and rheumy as a possible cause. I am now prescribed an AdCal D3 every day and think my level has gone up to low end of normal. My B12 is fine according to my GP but again this could account for a lot if you are feeling rubbish. Mat x
Title: Re: NOT Sjogren's after all...
Post by: kikil on December 06, 2014, 09:05:31 AM
I asked him to check these because I am on a vegan and gluten-free diet. Besides the vitamins D and B12I should also be taking calcium supplements, but he hasn't noted that yet. It is a relief that the blood sugar test was normal.
Title: Re: NOT Sjogren's after all...
Post by: MAT51 on December 06, 2014, 09:11:45 AM
That is good. Would you be able to get B12 injections and just take Vit D3? You may well find things improve enormously of you do - very easy to address. I wonder if you've tried Hudroxichloraquine yet as this is a med that would cover the RA and SS and many with RA take it in combination with other drugs. Matx
Title: Re: NOT Sjogren's after all...
Post by: kikil on December 06, 2014, 10:08:44 AM
At least years ago, I had prescription B12 tablets when the level was too low. Another doctor prescribed vitamin D + calcium tablets, which I haven't been taking anymore.

Probably they wouldn't give B12 injections -- the doctor actually told me I should eat meat!!! I do hope he was joking.

The hydroxichloraquine I haven't been offered. Since my rheumy thinks I don't have the dry eyes or mouth, he probably wouldn't. 
Title: Re: NOT Sjogren's after all...
Post by: MAT51 on December 06, 2014, 10:16:33 AM
Well I ask because it's very often used (certainly in the UK) for people with RA as a combined therapy with MTX or Leflunomide as it helps with broader symptoms - as well as being a drug used for Lupus and Sjogrens. I took it for 18 months before the dry eyes became such an issue for me.
Title: Re: NOT Sjogren's after all...
Post by: kikil on December 07, 2014, 05:20:29 AM
The only RA symptoms that I have noticed is occasional joint pain or bursitis. When I take the Leflunomide, no pain...or at least very seldom, and then I get cortisone shots.

So far all the blood sugar tests have been ideal, thyroid tests good...only the D vitamin and B12 vitamin are low. Hopefully that is going to b an easy treatment plan, and I really do hope that there won't be meds except for vitamin supplements.
Title: Re: NOT Sjogren's after all...
Post by: MAT51 on December 07, 2014, 06:07:25 AM
Well of course I don't know how bad your RA symptoms were before you started the Leflunomide but it honestly sounds as though, in your case, addressing the low B12 and D levels may will sort out all your problems apart from RA - and may help with this too. I am hypothyroid and have always struggled with eczema, allergies and dryness, weak nails and spells of severe hair loss so for me the RA was a few years of radical diversion from the normal types of pain and itch and chronic rhinitis etc.

On the Thyroid UK HealthUnlocked forum I occasionally use, many are advised to self medicate with various minerals, vitamins, detox diets and even T3 and T4 and to switch from the synthetic thyroid drug I take to Natural Dessicated Thyroxine. I've often been told that my normal range results are seriously out of whack for thyroid and B12. I respect their views because they are often people who have done much research for themselves and know a lot about the thyroid. But when you have more complex autoimmunity going on the last thing I would want to do myself is to self medicate because it becomes very hard to assess what is helping and what is not. At least if this is done with a GP or a rheumy you trust (to an extent) then you are taking these supplements in partnership with a medically trained person.

So I look, I read, I sometimes ask questions but will not self medicate with B12 or switch to NTD by myself as many on the TUK HU advise people to do.

Good luck with getting to the bottom of it all - your rheumy sounds very thorough and that is good. Mat x
Title: Re: NOT Sjogren's after all...
Post by: mistyrain on December 07, 2014, 11:06:14 AM
Hi Kikil and Mat and all: seems I have gone through such similar routes over the years on the topic of various deficiencies and sjogren's that I thought some of my experiences might be of help.  Incredibly tantalizing when trying to interact with various specialists and so on.  I recently tried to read a long paper by Dr Julian Birnbaum (Johns Hopkins) on "Neuropathy in Sjogren's" - among many other things he says:

"the eclectic permutation of peripheral nervous system (PNS) syndromes which occur in sjogren patients are among the most common and severe extraglandular complications" and goes on to review the various neurological complications in intricate detail.

He also goes on to mention various pitfalls of diagnosis and ...."a significant subset of patients may present with mild to no sicca symptoms...."

The entire paper is available to read on the internet and some people here have had the good fortune to be seen by him.

Re: vitamin D and also B12 and magnesium deficiences also.

It was fairly inexpensive and easy to bring my vitamin D numbers up once I had found out that I was very low but I did have to have the cooperation of my doctor to prescribe the initial high doses and each year about this time of year I start paying attention to taking enough D3 since I also try to pay attention to getting some sun in the summer.  There is a lot of information available on the internet as you no doubt have noticed.

The B12 deficiency was a little more complicated and it is something that is important to pay attention to in sjogren's as lack of intrinsic factor and dryness can cause the B12 not to be metabolized sufficiently.   I had to have B12 shots for a while after testing that I was in low normal levels, but the new doctor I had a year ago suggested I might be able to take the B12 sublingually and it might prevent having to have the shots.   I tried that for several months, not being quite sure how much to use and was tested again last week.  My tests came back quite high and I will continue to take it sublingually but now I have a good idea how often.

Now I had read that magnesium deficiency can affect the nervous system and many body functions and that it was very important to have a good balance between calcium and magnesium.  I pondered about this for a while because I had read that blood tests for magnesium deficiency were not always adequate.  So I decided on my own to take magnesium supplements the last few months and hope for the best.  They did seem to be helping.

This doctor I now have was very helpful when I last saw him a couple weeks ago and said that he could have the magnesium tested.   A letter from him last week stated that my magnesium was in the low normal range so that I should continue taking it.  Now I wonder what it was before I started taking it.  The neurological symptoms I have with sjogren's are the most upsetting of all and some of the symptoms are quite bizarre (in  my opinion - no one else can even see anything unusual - but pain and sudden escalating pains - oh - I won't go into it).   

So there you have it.  My experiences may save a little time, money and anxiety and although many doctors are quite agreeable to taking calcium, few of them seem to give magnesium deficiency much attention.
To your health

Title: Re: NOT Sjogren's after all...
Post by: kikil on December 08, 2014, 07:27:27 AM
Thank you, mistyrain / Edith for sharing your experiences. I think you're right, it is sensible to wait for the doctor to advise me on the vitamins needed at this point.

The results were posted online, and I got SMS messages telling me when they were ready; this took place at the weekend, and I am still waiting to discuss the results with the doctor. However, I stopped in town at a health food shop and picked up a bottle of spirulina capsules. They apparently have vitamin B12.

The reason I was in town was for an ultrasound of my neck. Here is the conversation I had with the doctor as he was doing the ultrasound:

Dr: Do you have dry mouth?
Me: um YEAH. Why do you ask?
Dr: Your salivary glands in front of your ears are very small. Sometimes this happens with Sjogren's syndrome.

This is like the punchline in a standup comedy routine. 'Sometimes this happens with Sjogren's..'

I can hardly wait to discuss this with the rheumatologist to see if he can still keep telling me that this is NOT Sjogren's. And hear what medications he is going to prescribe for my salivary glands.

Healing to you all,
Title: Re: NOT Sjogren's after all...
Post by: Carolina on December 08, 2014, 07:35:49 AM
Sjogren's - the gift that keeps on giving (and giving and giving, and TAKING!).

I think that almost all vitamin and other deficiencies can be measured with the proper blood work.  I could be wrong (and often am).

And I know that deficiencies can suddenly appear, probably due to changes in the way our bodies are processing food.  I developed anemia in my 60's, and copper deficiency, which is extremely rare showed up last year, when I was 71. 

So we must continue to monitor our health and work WITH our medical practitioners to optimize our treatments.

I wish we could find/ask for complete solutions/cures.  With immune mediated conditions like ours, that is highly unlikely, however.

Hugs,  Elaine
Title: Re: NOT Sjogren's after all...
Post by: mistyrain on December 08, 2014, 09:28:19 AM
Ah kikil - "sometimes that happens with sjogren's..." - next time you can ask - "what doesn't sometimes happen with sj..."  - reminds me of having hard wax cleaned from my ears last week and wondering if it was such a problem because my ear fluids might be too dry caused by sjogren's.  I will never know.  The nurse said I had very narrow ear channels - hmmmm!  As Carolina says: "the gift that keeps on giving!"

Way back in my distant memory banks in childhood Scotland, I can remember a very health conscious relatiive taking spirulina regularly - all the best with finding that to be a very healthful purchase!

I personally, over the years, have concentrated on trying to improve my general health condition in the hopes that it would help the sjogren's.   Having had way too many serious reactions to meds, this proved to be the only way for me to proceed.

All the best on your next medical visits!  Edith
Title: Re: NOT Sjogren's after all...
Post by: kikil on December 08, 2014, 10:11:57 AM
Thank you Edith!

About a year ago I went vegan + gluten free because I had read it was the 'best' diet for RA. Actually, my joints have felt better, but...apparently I don't get enough B vitamins if I don't do meat.

I just thought I could give the spirulina a try. Meat doesn't appeal to me anymore, so that is out. Pharmacy vitamin pills or injections are also not appealing.

Actually, I really do like my doctor and rheumatologist, who actually talk to each other and consult each other over coffee, so hopefully they can solve this puzzle.

I wish I had a dollar for every time a dr. has said to me that I couldn't POSSIBLY have (insert disease name here), and it turned out I had it.

:) Trying to see the humor here.