My First Discussion

General
1

Hi, I signed up a month or so ago. Rheumy suspected SS because of my symptoms, ANA's, and previously treated and cured Non-Hodgkin's Lymphoma. Symptoms are dry eye, mouth, skin, fatigue, joint and nerve pain, brain fog and clumsiness. Until this March, I was playing tennis, downhill skying and exercising at the Y. Now I am only walking and stretching.

Ophthalmologist prescribed Restasis and rheumy prescribed meloxicam, Cevimeline (for dry mouth) Hydroxychloroquine (for inflammation - Sed rate is 65). Rheumy also ordered a lip biopsy which returned negative. Rheumy said I do not have SS "but something is definitely going on with you". She told me to keep taking the above meds and to get more blood work before seeing her in 3 months. Either the meds will help or something else will show up eventually. I am not very comfortable with this plan. I also have osteoporosis, osteoarthritis and essential thrombocythemia for which I have taken hydroxurea for 27 years. Have an appointment for an infusion of Reclast.

I do understand that these auto-immune things are difficult to diagnose and may take months or years but I am impatient to get feeling better and back to normal.

Does anyone have suggestions or information on other things I can do at this point? Anything you can offer will be most welcome and appreciated. Thanks!

sjogirl

2

Hi sjogirl

sorry to hear of your problems.

It is "normal" not to get a diagnosis or a correct diagnosis or even any sense at all from a rheumatologist )see my profile page and various postings on this issue)

THERE IS NO TEST FOR SJOGREN'S WHATEVER YOUR DOCTORS SAY!

The tests used are not sjogren's specific and upto 40-60% depending on who you beleive of sjogren's sufferers are sero negative to all current diagnostics (anti ro/la and ana and rh)

Also many people are negative lip biopsy too although this may change with time.

Keep on until you get some sense saying you have symptoms but don't have sjogren's but do have clinical symptoms is unacceptable and what many of us are told. The only other possibilities are some infections that can mimic sjogrens these include Lymes and Whipples but they are not easy to test for and again diagnosis is frequently wrong inconclusive etc ...

In my research though there is no effective western medical treatment for sjogren's only plaquenil seems to have any effect and that is only on myalgias and possibly fatigue. Nothing works on the "sicca symptoms"

Like you I was very active tennis pro, single figure golfer, working hard on farm and nursery etc and within a week of onset of dry mouth I couldn't do any physical activity.

Hope this is useful info. Best wishes and good luck.

3

WAIT !!!! There is actually a test for SS. It's less than a year old called Sjo. It doesn't test the way a regular AI does. It looks for the antibodies that are specifically created when one has SS and is up to 85% accurate. Its a huge break through. I am in NY and its not offered everywhere. You have to find someone with access to it, though I am sure that will change.

I had tested negative for everything 2xs (but Rhuemy). My eye doc was the one who was on top of the latest research and arranged for Sjo. Oddly enough, when I say the new Rheumy, he was listening to my symptoms and sid ….WELLLLLL, it may not be SS. Till I told him I had Sjo done. Then it was OH! He got down to business, ran a mess of other tests to determine primary or secondary and so on, but it was amazing how seriously he took that. I think its good to know.

I am on Plaquenil too….It does help for pain and fatigue but know that it takes a long time to build up in your system.I have to say that it is working for me some, so I'm hoping the best for you. I know how frustrating it is too, to have been physically active and have that slip away. I had 14 years on the martial arts and prided myself on speed and precision. I have had to withdraw as I am afraid of hurting someone, even if I could move the way I used to. I drop things a lot now, or bang my hands into cabinets doors or shelves because the coordination is off. Brain fog drives me nuts in that I lose track of conversations, etc and I know what I am replying my be just off center. NOT good in my field but I'm working hard on that one.

Hang in there…..its frustrating but you have a doc that isn't writing you off and is willing to get to the bottom of it. That's a good find! good luck in your journey and keep us posted.

4

Great post!

5

Hi enjoylife
I was aware of that test but it isn’t specific as you say only 85% hit rate at best but is probably better than ro/la etc…
It also isn’t available outside the USA.
The only test that will come is based on the research of Tom Gordon in Australia who has found one membrane protein unique to ss and found in every patient thet have seen but as yet no anti body test has been developed for that protein.
It is very new research.

6

Dear sjogirl,

So sorry you are having such a battle getting a dx, took me about 6 or 7 years of constantly running to specialists to get answers, and like everyone here, I'm still anxious to feel better and get back to normal, 9 years later. That said, I can carefully look back at my life and see it at my heels many times. That makes sense discovering how heavily predisposed to autoimmune as I have discovered that I am.

I surely do not want to dampen your great spirit or strong determination, but there just aren't any quick fixes to this, even when you are diagnosed.

http://medical-dictionary.thefreedictionary.com/systemic We are definition #2.

I was tested regularly for about a year before my GP felt he had significant info to dx Sjogren's but he still wanted a Rheumatologist to concur. It was the second Rheumatologist able to do so. Before them, I saw 4 Neurologists, 5 Pain management, 3 surgeons, and countless others. I remain with my GP, Rheum and DC. They were the only ones who had a clue.

7



SK said:

Dear sjogirl,

So sorry you are having such a battle getting a dx, took me about 6 or 7 years of constantly running to specialists to get answers, and like everyone here, I'm still anxious to feel better and get back to normal, 9 years later. That said, I can carefully look back at my life and see it at my heels many times. That makes sense discovering how heavily predisposed to autoimmune as I have discovered that I am.

I surely do not want to dampen your great spirit or strong determination, but there just aren't any quick fixes to this, even when you are diagnosed.

http://medical-dictionary.thefreedictionary.com/systemic We are definition #2.

I was tested regularly for about a year before my GP felt he had significant info to dx Sjogren's but he still wanted a Rheumatologist to concur. It was the second Rheumatologist able to do so. Before them, I saw 4 Neurologists, 5 Pain management, 3 surgeons, and countless others. I remain with my GP, Rheum and DC. They were the only ones who had a clue.

8

Oh my gosh, SK, we are in same boat only mine just left the dock! I don't plan to get discouraged. Will just have to carry on. I'm now thinking that it does not matter if I ever get diagnosed because there is no cure for SS and not anything to control it either. However, I really would like to know if it's something else which can be cured or even treated. I will be seeing a neurologist in July just in case it's something like MS, which runs in my family. Thanks for your support.

9

I try and take the holistic route. I've been on Plaquenil 4.5 months but when I overdo it, I still get brain fog...and the fatigue is there but not as terrible as before. I've completely changed my diet, I meditate severak times a day, I see an integrative MD to oversee all my care (and give me supplements), and I see an acupuncturist weekly - sometimes twice. I also take Chinese herbs. I've just started all this and it takes a while to really see changes I guess but I'll keep doing.

10



Casey said:

I try and take the holistic route. I've been on Plaquenil 4.5 months but when I overdo it, I still get brain fog...and the fatigue is there but not as terrible as before. I've completely changed my diet, I meditate severak times a day, I see an integrative MD to oversee all my care (and give me supplements), and I see an acupuncturist weekly - sometimes twice. I also take Chinese herbs. I've just started all this and it takes a while to really see changes I guess but I'll keep doing.

11

sorry Della
I am trying not to be negative or condescending but there is no test for sjogren’s - just because you tested positive means nothing - SSA and SSB as you call them are NOT specific to sjogren’s and they certainly do not tell you whether it is primary or secondary (if there is such an artificial division anyway!) Anti ro/la are more indicative of SLE or Scleroderma if they mean anything and that is debatable as even there they have limited sensitivity and reproducability.

I REITERATE THERE IS NO TEST FOR SJOGREN’S PRIMARY OR SECONDARY or even any of the A.I. diseases…

If anyone can produce sound,conclusive,valid scientific evidence please publish it here I can and will produce the evidence to the contrary in the research thread - I haven’t because I didn’t want to be too pessimistic or negative for members who can’t critically evaluate the evidence but feel compelled to correct inaccuracies as a true scientist seeking after truth.
Sorry but that’s the truth as it is known to date.

12



sjogirl said:

Casey, It sounds like you have a good treatment plan going. I have put myself on an anti-inflammatory diet in hopes

of reducing the inflammation. Acupuncture did nothing for me. After I get accustomed to the Plaquenil, I will see a holistic practitioner to see if I can do anything else for myself. Thanks for your input.



Casey said:

I try and take the holistic route. I've been on Plaquenil 4.5 months but when I overdo it, I still get brain fog...and the fatigue is there but not as terrible as before. I've completely changed my diet, I meditate severak times a day, I see an integrative MD to oversee all my care (and give me supplements), and I see an acupuncturist weekly - sometimes twice. I also take Chinese herbs. I've just started all this and it takes a while to really see changes I guess but I'll keep doing.

13



EnjoyLife said:

WAIT !!!! There is actually a test for SS. It's less than a year old called Sjo. It doesn't test the way a regular AI does. It looks for the antibodies that are specifically created when one has SS and is up to 85% accurate. Its a huge break through. I am in NY and its not offered everywhere. You have to find someone with access to it, though I am sure that will change.

I had tested negative for everything 2xs (but Rhuemy). My eye doc was the one who was on top of the latest research and arranged for Sjo. Oddly enough, when I say the new Rheumy, he was listening to my symptoms and sid ….WELLLLLL, it may not be SS. Till I told him I had Sjo done. Then it was OH! He got down to business, ran a mess of other tests to determine primary or secondary and so on, but it was amazing how seriously he took that. I think its good to know.

I am on Plaquenil too….It does help for pain and fatigue but know that it takes a long time to build up in your system.I have to say that it is working for me some, so I'm hoping the best for you. I know how frustrating it is too, to have been physically active and have that slip away. I had 14 years on the martial arts and prided myself on speed and precision. I have had to withdraw as I am afraid of hurting someone, even if I could move the way I used to. I drop things a lot now, or bang my hands into cabinets doors or shelves because the coordination is off. Brain fog drives me nuts in that I lose track of conversations, etc and I know what I am replying my be just off center. NOT good in my field but I'm working hard on that one.

Hang in there…..its frustrating but you have a doc that isn't writing you off and is willing to get to the bottom of it. That's a good find! good luck in your journey and keep us posted.

14



sjogirl said:

Just on time. I happen to have an appointment with my ophthalmologist tomorrow! I printed out a report I found on the internet about the Sjo test and will discuss it with him for starters. If he does not know about it, I will find someone who does. It can't hurt to have this test done. I live in upstate NY so it must be available.

Sorry that you had to give up your sporting life. That is the thing I am grappling with the most. I don't have a choice but it is hard to come to terms with giving up that aspect of my life. I still belong to an art club though so I will stay socially involved and can still paint. I need to find some other fun outlets though. I find Y classes pretty boring compared to skiing and playing tennis.



EnjoyLife said:

WAIT !!!! There is actually a test for SS. It's less than a year old called Sjo. It doesn't test the way a regular AI does. It looks for the antibodies that are specifically created when one has SS and is up to 85% accurate. Its a huge break through. I am in NY and its not offered everywhere. You have to find someone with access to it, though I am sure that will change.

I had tested negative for everything 2xs (but Rhuemy). My eye doc was the one who was on top of the latest research and arranged for Sjo. Oddly enough, when I say the new Rheumy, he was listening to my symptoms and sid ….WELLLLLL, it may not be SS. Till I told him I had Sjo done. Then it was OH! He got down to business, ran a mess of other tests to determine primary or secondary and so on, but it was amazing how seriously he took that. I think its good to know.

I am on Plaquenil too….It does help for pain and fatigue but know that it takes a long time to build up in your system.I have to say that it is working for me some, so I'm hoping the best for you. I know how frustrating it is too, to have been physically active and have that slip away. I had 14 years on the martial arts and prided myself on speed and precision. I have had to withdraw as I am afraid of hurting someone, even if I could move the way I used to. I drop things a lot now, or bang my hands into cabinets doors or shelves because the coordination is off. Brain fog drives me nuts in that I lose track of conversations, etc and I know what I am replying my be just off center. NOT good in my field but I'm working hard on that one.

Hang in there…..its frustrating but you have a doc that isn't writing you off and is willing to get to the bottom of it. That's a good find! good luck in your journey and keep us posted.

15

I was just cleared by a retina specialist to take Plaquinil, so after a few months we'll see what happens. I had been taking Enbrel for Arthritis, but after about 2 years had to discontinue that (due to recurrent infections) and was told I'm unable to take another biologic med. I was expecting the arthritis to really ramp up when I stopped this med, I certainly noticed a difference, however I had NO IDEA it was helping the Sjogren's as much as it had, until discontinued. My Rheum was amazed to hear this, so you learn something new and helpful all of the time!

MS or SLE is still suspected, so far the 3 brain MRIs have come up clean, however it is not unheard of for Sjogren's to cause brain lesions. Seems this is rare, but just more news we could live without! The brain fog is more than enough!

I hope that things go well and that MS is rule out for you. Getting diagnosed with any of this is terrible, not getting diagnosed is far worse! I am always hopeful that good news is around the corner!

Wishing you well,

SK

sjogirl said:

Oh my gosh, SK, we are in same boat only mine just left the dock! I don't plan to get discouraged. Will just have to carry on. I'm now thinking that it does not matter if I ever get diagnosed because there is no cure for SS and not anything to control it either. However, I really would like to know if it's something else which can be cured or even treated. I will be seeing a neurologist in July just in case it's something like MS, which runs in my family. Thanks for your support.

16

Hey Sjogirl....

If you have trouble finding someone that can test, let me know. I'll ask my eye doc. We are down on Long Island and he had someone come directly from the lab that is doing the test. He explained everything about it while the tech drew the blood. Its a finger prick and they put drops on (I think) 7 different test spots. No biggie at all.

Giving up an active life is so difficult mentally. It is so attached to who we see ourselves as and what we are capable of. I am in the mental health field so I am happy to have a job I can do long after the body stops agreeing with me BUT there is something about not being as physically capable as I was that is hitting as a real loss. Interesting.......

17

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18

I totally agree with your last paragraph enjoylife - I cannot be me or exist as who I am without my physical capabilities it is who and what I am.
I have played and coached sport all my like cycled, walked, gardening, growing plants commercially in my nursery, have done wood carving, wood turning painting etc now I can do nothing in these areas.
I would rather lose some mental acuity than physical.

19

But you are sounding very condescending. The markers ALONE may not mean much, but when in conjunction with the visible symptoms and the statistics of patients with those particular markers and symptoms, they DO get very accurate in the diagnosis of Sjogren's. Maybe no ONE test, but a few specific identifiers taken together do make the diagnosis possible. MOST SSB-positive patients ARE Sjogren's victims. I did NOT say there was ONLY one test that would be used.

If you can prove to me that I DON'T have Primary Sjogren's then YOU PLEASE DO SO.

assybish said:

sorry Della
I am trying not to be negative or condescending but there is no test for sjogren's - just because you tested positive means nothing - SSA and SSB as you call them are NOT specific to sjogren's and they certainly do not tell you whether it is primary or secondary (if there is such an artificial division anyway!) Anti ro/la are more indicative of SLE or Scleroderma if they mean anything and that is debatable as even there they have limited sensitivity and reproducability.

I REITERATE THERE IS NO TEST FOR SJOGREN'S PRIMARY OR SECONDARY or even any of the A.I. diseases..

If anyone can produce sound,conclusive,valid scientific evidence please publish it here I can and will produce the evidence to the contrary in the research thread - I haven't because I didn't want to be too pessimistic or negative for members who can't critically evaluate the evidence but feel compelled to correct inaccuracies as a true scientist seeking after truth.
Sorry but that's the truth as it is known to date.
20

Sorry Della as I feared you completely misunderstand my comment.

I am not saying that you don’t have SS primary secondary or any other fantasy the rheumatologists care to invent.

I said there is no definitive test for Sjogrens and many MILLIONS OF PEOPLE worldwide are misdiagnosed as not having SS because the medical profeassion in USA and UK have a convention that you can only be diagnosed as SS IF YOU HAVE 3 OUT OF 4 OF THE FOLLOWING AND AT LEAST 1 of ITEMS 3OR4. Some other ountries have a different convention!!!

1 xerostomia as identified by a dental professional/oral/maxillary surgeon ideally with stimulated and non stimulated salivary flow measurements.

2 xeropthalmia schirmers test 5mm or less by opthalmic consultant

3 anti rh/ro/la antibodies - any one of these

4 positive lip biopsy as determined by focal scoring (some institutes accept ultrasound scan on salivary gands evidence but the international convention does not.

MANY _ BETWEEN 40% AND 60% OF US DO NOT HAVE ITEMS 3 OR 4 POSITIVE THEREFORE THE RHEUMATOLOGISTS REFUSE TO ACCEPT THEY HAVE SS _ THIS IS BUNKUM BECAUSE BOTH THE TEST AND CONVENTION ARE FLAWED!!!
I will post elsewhere the evidence for this if you want to raed the scientifi research papers and not just Google headlines or media sound bites.

There is massive controversy in this field andy many consultants including rheumatologists refuse to accept the convention and diagnose clinically using their own judgement.

My comments were not aimed at you personally but as a scientist with a medical post grad degree I only want to publish the truth and not mislead forum members especially new ones who have no bakground as yet of knowledge.

I contradicted yourcart blanche statement that

1 there is a test for SS - THERE IS NOT

2 positive anti ro/la DO NOT CONFIRM ANY DISTINCTION BETWEEN PRIMARY OR SECONDARY SJOGREN’S (EVEN IS THERE IS SUCH A DIFFERENCE WHIH IS HIGHLY DEBATABLE - NOT JUST MY OPINION BUT THAT OF MANY SENIOR CONSULTANTS)
FURTHER HAVING POSITIVE ANTI RO/LA (ssa/ssb AS YOU CALL THEM IS NOT SOLELY INDICATIVE OF SJOGREN’S INDEED THEY ARE MORE OFTEN POSITIVE IN S.L.E and R.A.

Please read my first comment again - I was not and do not doubt that you have SS and like all of us are suffering and I feel for you as I do for any one with this disgusting disease.
But I could not let the incorrect scientific comments stand uncorrected as they will mislead anyone who hasn’t researched the thousands of papers out there and can evalauate their veracity.
Just because it is published and even peer reviewed does not mean that it is true.

All scientific papers should be read with healthy scepticism and the result evaluated, the stats tests evaluated and the whether the report comclusions actually reflect their own results -all too often they don’t.

My comment about condescension was beacause I was contradicting your medical/scientific opinion not your disease or sincerity.
Please accept my humble apologies if I upset you - nothing was personal - I just get frustrated when statements are given as “truths” without scientific support especially when the audience may not have the ability/knowledge/training etc to evaluate for themselves.

BEST WISHES TO YOU AND ALL SS SUFFERERS EVERYWHERE - I joined this forum to get support, to learn ( I have leared from many posts -particularlymby KAZ, DRYGUY and SK as they reference their comments) and to offer support especially the scientific ability to criticise the many items out there which are untrue or based on very weak evidence. I promise that as sooon as I find any treatment or research on this subject that stacks up and is helpful I will shout it out loud from the rooftops and in this forum first.
:slight_smile: