True or False?

Allergies, blood and immune system
1

Hello all! I have a question I hope someone can clarify for me.

In my recent reading of information about Sjögren's Syndrome there is something I have seen mentioned a few times which doesn't seem to ring true to me.

Many seem to say that it's not that important to get a definite diagnosis for S.S. as there is no treatment anyway, just as long as one is getting management for the individual symptoms, whether that be pain, or dry mouth or gut motility issues etc.

However if this is an autoimmune condition whereby the immune system is ramped up beyond normal, surely one of the goals would be to lower the immune response to prevent further damage to other tissues or organs......hence the use of immunosuppressive medications? The goal of immunosuppressive drugs being to inhibit the activity of the immune system.

Without a confirmed diagnosis, immunosuppressive drugs (or other effective treatments), are less likely to be felt to be warranted or indeed implemented by most doctors.

Treatment for individual symptoms is well and good and can make life tolerable but they alone do not prevent the progression of other extra glandular symptoms stimulated by an overactive immune system and it's concomitant autoantibodies. At the very least a confirmed diagnosis gives credence to the disease process thus mandating regular surveillance and monitoring for ongoing changes.

 

So my feelings are that it should be paramount to get an objective diagnosis, notwithstanding seronegative status (if that is the problem), by whatever means possible! It occurs to me there is a laissez-faire attitude to obtaining a diagnosis of this condition particularly on the part of medical practitioners and sometimes reflected in patients comments also.

Thoughts?

2

I think what most folks are getting at is that it often takes many years to get a diagnosis. Not the case for me, but then I spent 20 thinking nothing of the copious amounts of water and sugar free gum I went through and never mentioned it to docs.

On the other hand not everyone wants to get within a mile of immunosuppressive drugs. I would have to be much worse to even think of that. That may depend largely upon whether one has primary or secondary ss. I'm not sure which I have; my rheumo is a waffling jackass. As doesn't get a lot of respect from most docs including the rheumos.

3

Hi Megheart,

Aitarg speaks for me too. I did seek help for my initial symptom, which was also dry mouth, but neither my GP nor my dentist was remotely interested, so I too just accepted it as something I'd have to live with. When the peripheral neuropathy started, my GP said it was just a symptom of old age. (I was about 50 at the time.) Ditto the constant attacks of conjunctivitis that started a little later, the result of dry eyes. I also saw an ophthalmologist about this one, and she too just said old age. And so it went on for ten years through successive flare-ups of these and other symptoms, including Raynaud's syndrome, tendinitis, arthritis etc., with my thyroid gland slowly running down too. Finally my GP included anti-salivary gland antibodies on a routine blood test and I got a diagnosis. Shortly afterwards, she caved in and finally put me on thyroxine too, which made me feel a lot better.

Also like aitarg, I wouldn't touch immunosuppressants with a barge pole! Why on earth would I want to run all the risks of reducing the efficiency of my immune system to counteract a condition which I find perfectly manageable, albeit painful and a bit disabling at times? I like my immune system. It takes care of me. I haven't had a cold for 13 years.

Maybe if it got to the point where I couldn't get around or take care of myself I might consider immunosuppressants the lesser of two evils. Many posters on this forum have reached that stage. They're the unlucky ones. But SS isn't severely disabling for everyone. 22 years down the line from my first symptoms, I'm in no worse state than I was then. In my case, SS follows a pattern of flare-ups and comparative remissions, and I never get all my symptoms at the same time.

4

I was diagnosed (apart from dry moth i also had painful wrists, knees and swollen knuckles and got to pint where i couldnt even hold a knife to cut food) and immedaitey presribed immuno suppresants which i took without question. I stopped once all symtons subsided (the rheum was not happy) and i do have stiff knuckles and sometimes swollen wrists and painful knees (walking up and down stairs is painful) which lasts for a week or so and subsides. Maybe if symptoms return for longer periods of time (esp knees as i live in a 2 storey house) then i may take the med.again 

5

I have had SS for over 30 years now and I wouldn't touch immunosuppressants

I take double the recommended dose of relevant supplement, eg: magnesium, vit D, mutton bird oil, tumeruc etc etc, plus mouth moisturizer-artificial saliva and drops for eyes so far its all been ok, it does seem worse at times..but it does eventually become manageable also I have Asthma..Arthitis and Fibromyalgia, all autoimmune issues. There is an Autoimmune Protocol eating lifestyle...Paleo, look it up its awesome..really helps😉😍😍.

6

Just re-read this post. Are you actually a sufferer?

7

Hi Megheart,

Good question! My understanding is this... Trying to obtain a SS diagnosis can be tricky and some doctors are not well versed in Sjogrens to begin with. The go to drug seems to be Plaquenil-(Hydroxychloroquine) which is a DMARD-Disease Anti-Rhuematic Drug designed to reduce pain and inflamation, prevent joint damage and slow down progression of the disease.When there are signs of Autoimmune disease but nothing conclusive for Sjogrens specifically, many are started on this drug first. Although originally for use to treat Malaria it has been very successful in relieving many Sjogren and other Lupus symptoms. The addition of Immunosupressive drugs such as Methotrexate may be added later to further control Pain, inflamation and damage to joints due to other Autoimmune conditions related to arthritis. Many people will give up trying to get a conclusive diagnosis of Sjogrens when they find out the diagnosis itself is secondary to immediate treatment.  I don't think desperation should be confused with attitude. The goal is to be well and improve quality of life. There is more than one way to skin a cat...Hopes this gives you new food for thought!

Sincerely,

Sally  

8

Correction DMARD Disease Modifying Anti Rhuematic Drug

Sally

9

Thank you all for your responses. Sorry for my delayed acknowledgement.

aitarg  - yes it is sometimes serendipitous what we mention to our doctors. The very thing that may seem so inconsequential to us can be what lights the doctor's fire.......or conversely a very overt symptom as lily says can be dismissed as due to 'old age' at fifty. That is outright negligent.

lily - it never ceases to amaze me the casualness with which symptoms are dismissed by many doctors, GP's and specialists alike. I guess they hear people going on all day about this ailment and that and they must start to wish people would go away and stop whingeing. That is all I can conclude. Why be a doctor then? 

It is inexcusable when a specialist misses something. Like an Opthalmologist with eyes. They have a finite number of diagnoses they can make in their field and a simple question like, "do you have other symptoms" or "how is your health generally" could elicit just the information they need to put things together. Many doctors are brilliant and do of course ask the right questions but judging by the S.S cohort many don't.

Regarding the immune system! It is not a healthy or efficient immune system keeping the colds away it is an overly efficient which is basically a defective working immune system which is doing that. I too haven't had a cold for nine years but wouldn't I prefer the odd cold to the breakdown of other body systems; autonomic & peripheral nervous system, lungs, kidneys, joints, not to mention 24/7 pain etc? 

shaq - I am pleased to hear that you have had relief from taking immunosuppressants on occasion. Do you think that your symptoms are advancing....eg. do you keep getting a  new symptom about once a year or so?

christine - I am glad that the supplements and other products are helping you. Turmeric is particularly effective for inflammation according to the published evidence. I will also look into the Autoimmune Protocol - paleo diet when I get a chance. An initial perusing of the sites shows it would be tough to follow especially in a household where others do not follow the same diet. For instance, adding sesame oil would require either no-one gets it or I (primarily) who cooks and already just hanging on to that ability would have to cook a separate meal. Too exhausting! However the upside is if the diet makes a difference maybe cooking would't be so labourious. Catch 22!

Part of the reason I haven't investigated things like the above diet is because I have been labelled as having Fibromyalgia for seven years. Fibromyalgia is not an autoimmune condition (see below). Therefore I have just accepted that diagnosis and got on with it. I never really believed it to be the answer. Now with my ANA's, and other SSA anti Ro52 and Ro60 coming back elevated and positive finally I believe we are closer to the truth of what is going on.

From the AARD website the following comment is made.

Fibromyalgia is a chronic disorder which is characterized by widespread pain, tenderness and fatigue.  Persons with fibromyalgia may also experience sleep disturbances, morning stiffness, anxiety, and irritable bowel syndrome. Often it is also accompanied by depression. It is difficult to diagnose because most of the symptoms mimic those of other disorders.  Fibromyalgia is NOT an autoimmune disease, however it does accompany other autoimmune rheumatic and endocrine diseases.

sally - thank you for your helpful reply. You say it well when you said, "Many people will give up trying to get a conclusive diagnosis of Sjogrens when they find out the diagnosis itself is secondary to immediate treatment". By and large this has been my 

story although not intentional as the diagnosis of Fibromyalgia was where I settled despite not believing it to be the (full) truth. Getting effective treatment for the various symptoms made life tolerable. Such as beta blockers/Propranolol for autonomic othostatic intolerance, Domperidone and liquid diet for gastroparesis, Tramadol for pain, Lyrica for peripheral neuropathy etc. 

Yet other things kept emerging like lung symptoms, urinary bleeds and sweating aberrations, as well as worsening stiffness and joint pain. 

So finally this year I went to my GP and said please test these things and I listed them off. They came back positive and my ANA's were high. (In 2007 & 2008 when I first got ill they were all negative). So from there I have seen a(nother) Rheumatologist. She has done more tests and I am due to see her in two weeks time. I will know more then.

So that's about where my journey is at present!

10

Thank you for your considered response, Megheart, and I'm sorry to hear you have such severe health problems.

I would, however, take issue with you on the immune system. My remark about not getting colds was somewhat flippant, but it still stands as an indication of the efficacy of my immune system. As you're clearly aware, the immune system doesn't just protect us against minor infections, it plays an important part in destroying the cancerous cells that constantly develop in our bodies.

I come from one of those "cancer families". And yes, I know, no one has so far proved the existence of a generalised oncogene, but that doesn't mean it doesn't exist! My paternal grandfather and his identical twin died from colorectal cancer at a relatively early age (40 in one case); my father at 67 from lung cancer; his sister at 51 from cervical cancer; one brother from pelvic cancer, also 51; and another from stomach cancer around the age of 70; and, at 72, I have already outlived several of the children of the siblings who died.

One of my colleagues has been on methotrexate for five years for RA. She is happy with the results, but is becoming increasingly concerned by the fact that since starting the methotrexate she's been getting five or six heavy colds a year, many of them progressing to bronchitis. She talks to me about this, knowing that I have a nursing background. I am, of course, careful never to express an opinion, or say anything that might alarm her or contradict the advice of her rheumatologist. But I can't help thinking this is a sign of a compromised immune system, and privately wondering what else it might be letting through.

As several of us have pointed out, if SS symptoms become intolerable and disabling, damping down the immune system might well be the lesser of two evils. However, there's plenty of evidence that SS doesn't cause serious permanent damage to tissues or organs in all sufferers. I've clearly had it for 22 years, even though it was only diagnosed 12 years ago, and the only permanent organ damage I've been left with is an underactive thyroid, which can easily be managed. The long remissions between attacks of peripheral neuropathy suggest I have suffered no nerve damage. The dry mouth that plagued me in the early days has largely resolved, with no permanent effects on my salivary glands. I only suffer intermittently from excessively dry eyes these days, and usually when I've neglected to take proper precautions. I have a little joint stiffness first thing in the morning, but no more than most of my contemporaries - and less than many.

As I've stated before on these boards, I suspect posters on any forum discussing a chronic condition will be a self-selecting group - in the statistical sense, of course. They're likely to be those who suffer the worst symptoms. Many people on this forum are suffering very badly from SS, and have benefited from immunosuppressive therapy. That doesn't mean it's desirable for the majority of us.

11

Hi Megheart,

looks like your test results are finally going to give doctors specifics. I worry about your comment that pain and stiffness seems to be getting worse. As there are over 100 different types of arthritis and they can accompany autoimmune disease I ask you to not rule out immunosuppressant drugs. Arthritis progresses quickly and can be deformative. I have been on Methotrexate 8 months now for Lupus Arthritis...I have not had issues with colds etc. and I have flown several times without getting sick a week later as some people complain.With the MTX and cortisone injections I have been able to manage the arthritis. I just ask that you keep an open mind... Remember no one can force you to take certain meds it will be your choice to start and your choice to quit...just keep an open mind. It may be the lesser of two evils (sad but true!)

Good luck and feel better,

Sally

12

My thoughts exactly Lily. 

I too come from a family prevalent with carcinomas and being cognisant of the effects of dampening down an overactive immune system decided not to raise it as a proviso as it meant introducing another tangent in an already long message.

Because of the above, it is definitely a fundamental consideration for me when/if I need to make a decision regarding the use of immunosuppressants. 

13

Apologies everyone for my repeat messages above! I kept getting an ‘internal server error’ message when I tried posting and nothing appeared so I tried various things like logging out etc. I cannot see a delete button to erase these excess messages. I was a bit dismayed when I came to my desktop this morning and found they had all posted.

I don’t think my iPad likes this site. Has anyone else had problems?

14

Yes Sally it will be interesting to see what tests the Rheumatologist did and the results. I usually copy down or take a photo of the pathology request slip before handing it over but just forgot until it was too late. Will be more vigilant about asking for a copy of all the results for my own records.

​I guess I am trying to do some research in the interim on the various treatment options she may suggest (if any). To be forewarned is to be forearmed and all that!

​I appreciate your input.

.

 

15

It's been running very slowly the last few days, and I've had problems getting in. To remove the superfluous messages, all you have to do is click on the "report" flag at the foot, and report it as a duplication. There might be a delay in removal as this is the weekend, but they'll eventually disappear.

16

Don't worry Megheart, I think we all knew that this was a case of nothing more than computer system yayas (used per the true Southern meaning, nuts or crazies)

17

I think it is important to get a diagnosis because I have found that health professionals don't take you seriously until you have one.  My various doctors kept acting like I was just stressed or anxious or malingering.  I finally pushed my GP to test for something because I knew my fatigue and eye irritation were not normal and came back positive for the SSA antibodies.  Only then did they stop treating me like I was crazy and start trying to figure out how to treat my symptoms.

18

I completely agree Meg. To have a confirmed/quantitative diagnosis gives objectivity which doctors can't argue against.

Case in point. Just three weeks ago when I went to see my current Rheumatologist for my first visit, I had in preparation obtained copies of all the pertinent tests I had had done over the nine years since becoming unwell. When I told her I had  Gastroparesis, I said my stomach emptying was zero for solid food, she said "oh did you have an emptying study done" with a bit of a sceptical look in her eye?". So I handed over the report of the GES results and in black and white she could read the results. No question - she believed me.

It makes a huge difference. It is unequivocal.

19

10 years after my first diagnosis by an ENT which had been confirmed by not one but two rheumos, a GP I'd only seen for 3 or 4 years decided that she & her cohorts didn't "think" I had ss. Of course it didn't matter much as I had my Rx for evoxac from the rheumos. My jaw dropped to the floor when she said that. (they're also wrong about late-life and/or after-multiple live births returns of endometriosis)

20

Sadly, this is a widespread problem among doctors of all kinds, not just GPs. After all, the ophthalmologist I saw in the early days of SS simply dismissed my five attacks of conjunctivitis in 14 months without even doing a Schirmer test! Nor was she interested in the fact that I was also suffering from peripheral neuropathy and had just come through a period of very dry mouth. She simply confirmed that my eyesight and intraocular pressure were fine, and there were no anomalies of the optic disc. Reassuring, but a high-street ophthalmic optician could have told me that for a fraction of the cost.

I think the problem resides in a combination of the education of doctors and the public adulation of them - the latter in turn growing out of an understandable, though not always realised, fear of death. For as long as we've had doctors - so more or less from the beginning of human civilisation - we've been in thrall to them. Regardless of what we might say, even to ourselves, human beings are hardwired to desire immortality. Medical treatment has always been perceived as offering that - sometimes in the literal sense in more primitive times, but still at a subtler, unconscious level now.

Over the millennia, this unhealthy, compliant attitude has inevitably led to many doctors seeing themselves as infallible beings who must never be questioned. We all make mistakes and poor judgement calls, whatever we do for a living. It's part of the human condition. Most of us admit our mistakes, and try to learn from them. Too many doctors, convinced of their own infallibility by the joint conditioning of their training and the adulation of their patients, aren't able to do that. Hence these abrupt ex cathedra pronouncements that can never be revised. I'm not saying all doctors are like this, but at the most generous estimation, I'd say a very significant minority are.

I have to say I've seen the other side. I fell on my feet when I moved house three years ago and started seeing a different GP. Though authorative (not the same as authoritarian) and not afraid to tell me in no uncertain terms when he thinks I'm wrong, he's also a model of humility, open to different views and only ever issuing advice, not orders. This is how it should be.

We can't undo thousands of years of conditioning, but I do think we can all do our small part to bring about change by questioning our doctors and standing our ground when we don't feel happy about their advice. That goes for dentists too, by the way. Last week, my dentist - who seems to be a competent young man - was reduced to incoherent shouting when I politely questioned him as to the wisdom of a procedure he was proposing to carry out. Another one bites the dust...