Thank you

[wisconsin41]

Thank you for this forum and the people who frequent here.   

I am currently struggling beyond what I ever thought imaginable, just out of the blue this wretched creature has slammed me. I want to be here for my daughter and wife but am not sure how much suffering I can take.  I want to hold on, hoping for better days....

Andy in Wisconsin
40 year old male

[Carolina]

Oh, dearest  Andy,

There are so many ways to help with the 'difficulties' of Sjogren's.

And getting a sense of what is going on, and ways to manage, and just going down the road a bit further will help relieve some of your anxiety.

That said, however, I won't minimize that some days may be harder than others.

Most auto immune conditions have periods of inactivity or remission, or calmness.  Remember that things will be better......

And you will find your coping skills and coping medications and treatments.  You will.  Please trust me.

And you have so many good reasons for optimism and hope.

You need:

something for depression, pain, and dryness, at the very least. (If you have dryness, some don't).

There are short term courses of Prednisone that might give you instant relief and snap you out of the 'flare' (high activity) of Sjogren's that brought you to diagnosis.

And there are medications to repress your immune system on a regular basis.  I haven't taken those, but many many here do.

Remember it is your immune system attacking your own body that causes the problem.  Generally there are remissions in the assault, and even during the 'flares' there are ways to feel better.

You will find your way, sir.   Learning to accept what IS, is part of the journey.

I have no doubt of that.

And you will look back on this time as a challenge, but one that you took in stride.

Hugs

Elaine

[finallyadx]

Wow Wisconsin - I could not really say anything that Elaine has not already said in such an eloquent (spelling?) manner.

She is so true when she says that AI diseases are a true test of our ability to handle a challenge.  We have good days and bad days and there are ways to cope with the bad days.  As Elaine mentioned there are meds for depression, meditation, exercise, support groups, then there are meds for the joint pains and discomforts.  There are many folks on this forum who I am certain will chime in with some great suggestions.  You do not state at the bottom of your post what you may or may not be taking for medications and support.  Some of the medications used to lessen symptoms of sjogrens can take time to work into your system and show some improvement in symptoms, such as plaquenil.  Plaquenil can take 6 months to show full benefits.  As Elaine also mentioned there is the "good old" (and I use that terminology loosely) prednisone or steroids that can help to lessen your flares.  Many folks on this forum also utilize therapists to get through the really rough times. 

Hoping each day is better than the one before and that you can find some symtom relief and support.

Sending healing thoughts and prayers your way.

[Joe S.]

Wisconsin41, I understand the challenges you face. I faced similar ones 30 years ago. Things will change as you learn to manage your specific challenges. Live for your family. Things will get better. You can PM me for a skype or phone conversation if you wish.

Here are my standard tips to help you with management.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[wisconsin41]

You folks are great. Than you so much for your encouragement.

Andy

[A66eyroad]

So Andy, when is your next doctor appointment?

I was once where you are now, and maybe had a much worse attitude than you seem to have. But these days I'm almost as good as new! I still have Those Days once in a while, about every two to three weeks, but even then I know they'll go away. That makes a big difference.

Sweet Carolina said everything I'd like to say, only more eloquently than I eve could. Bless her!

Joe's words of wisdom will help you a lot, also. Spoon theory is a great little piece to share with your significant other, and his Fabulous Five really are fabulous.

FinallyADx had some good thoughts about medicines, and I'd be interested to see what your doc says you need to take. I'd also be interested to read about how you were diagnosed.

There's a wealth of information on this board -- go to the main page by clicking on the title at the top of this one, and there's a box at the top right. Enter any term you might have questions about - medication names, problems you may be having, stuff like that - and you'll see all the posts that have been written. If you don't see what you need, or if you just feel like venting or getting a new perspective, feel free to start your own post. And you're now one of us, so if you see a post by someone you think you can help, jump right in!

So welcome, and make yourself at home.

[wisconsin41]

FinallyADx had some good thoughts about medicines, and I'd be interested to see what your doc says you need to take. I'd also be interested to read about how you were diagnosed.

Well I am actually in DX limbo: GP had ANA/C-creative?/RA panel done, all normal. Told me to go away(pretty much). I called and begged for a Rhuemy referral which is still 1.5 weeks away. In the mean time I went to an ENT who didn't do any spit testing He just said "well your mouth does look somewhat dry but it it's hard to tell from looking." He was going to get up and leave when I asked for some Evoxac, which he gladly provided. I also went to a nice optometrist who has always very considerate. She said my tears were moderately dry (from the dye and light thing) and past exams. She said "based on your symptoms it sounds like Sjogrens, go see a rheumatologist".  So I have no idea what the rhuemy will say or do... Is there anything else that can mimic Sjogrens hallmark dry>eye,mouth,sinuses?...

[quietdynamics]

"based on your symptoms it sounds like Sjogrens, go see a rheumatologist"

Since you know about the New Early Test..you could talk to your GP about that test. Take in the information and discuss it. This post has the actual study: https://sjogrensworld.org/index.php?topic=22714.0

...article and Immco info.

But, yes there are diseases that Sjogrens mimics, so conversely would mimic Sjogens as far as symptoms and stymy Doctors, even specialists in this area..who do not agree on every point or treatment protocol.

So I am hoping that your doctors will do further test....and on a personal note; I am hoping that in the event you have something chronic it is a "better known" condition.
In the meantime..best to NOT add supplements while the testing process is going on...do not want to skew tests.
Keep a diary.
Stay positive.
Adapt.

[A66eyroad]

My rheumy isn't as concerned with test results and lip biopsies as he is with treating symptoms. He's of the "if it walks and talks like a duck, let's treat it like a duck and see what happens" school of medicine. When he told me he would treat me as though I have Sjogren's after having been sick for more than five years, I was so relieved to finally have a name for it that I just dissolved into tears.

That having been said, he told me he wasn't going to "label" me with SJS. But now, three or so years into it, my itemized bill thing that I turn in to the front desk always has the written diagnosis of Sjogren's. So who knows!

I take 400 mg of Plaquenil a day, and that has, quite honestly, given me my life back. I'm not exaggerating when I say I was ready to give it all up. My rheumy saved my life.

I hope you have the same great result that I've had.

[wisconsin41]

Hi,
    Yes I was looking over the info on this new early test. $692 for all of the Sjogrens testing, that is right from Immco. Whether insurance pays is a different matter.
   Does this new testing require the lip biopsy???

-Considering moving to a optha from a opto

-Defiantly wanting to try something to try to hold this disease back. My eyes have been bugging me for years but I just became chronically thirsty 6 weeks ago.

[Carolina]

Ahh, I cannot resist giving advice.  My weakness!

Keep your salt shaker handy (all advice should come with its own grain or two of salt!)

About medications:

1.  A medication that works for one person, may not work for another, and may harm a third.  Only large clinical trials can establish the 'normal' behavior of a medication.  But even then, your responses may not be normal.   Everyone will have ideas for you:  medications, foods, herbs, exercises:  an anecdote from one person is not a clinical trial.  Keep your salt shaker handy!

There is a certain amount of trial and error.  Even different 'brands' or formulations of the same medications can work differently in the same person.

2.  Your response to a medication may change over time, so continue your search to understand what all your options are.  I have become allergic to all prescription pain medication, which leaves me few options from the pharmacy.  There are several medications that address pain, but are not opioids.  And there are techniques for managing pain and discomfort, as well.

3.  You may get a definitive diagnosis, but don't count on it.  YOU know what's going on, although it is sometimes easy to be swayed by doctors who say, "Sorry, nothing there".  The Dryness Syndrome that doesn't meet the criteria for Sjogren's Syndrome is called Sicca Syndrome.  Whatever the diagnosis, you need the appropriate level of medications to help you cope.  A good doctor will recognize that.

4.  Fear and worry make everything harder in life.  Among all people in all places at all times, there are those who have learned to view life through conscious efforts to handle fear and worry.  This is a form of wisdom that can help you with all of your life, Andy.

There are many good books about living with chronic illness.  My favorite is How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard and Sylvia Boorstein. 

Waiting for appointments can be difficult.  Use the time to begin organizing your information to give to the doctor.  Go over your life and by  date, track your illnesses, your medications, your diagnoses, treatments, symptoms, effect on your life, frequency of illnesses, etc.

Always start with your most important issue in a meeting with a doctor.   When possible have all records from earlier doctors and tests with you.

This process of organization will help you in the visit, and will be vital to your doctor's ability to help you.

If possible take another adult with you, who is supportive.   The second person doesn't need to talk much, but can take notes and help you remember things if necessary.

Most of us wind up with quite a few doctors in our lives, Andy.  You may not, but you are already seeing several, so you know that you are now the 'conductor' of your medical orchestra!

Keep us posted.

Hugs

Elaine

[quietdynamics]

Hi,
    Yes I was looking over the info on this new early test. $692 for all of the Sjogrens testing, that is right from Immco. Whether insurance pays is a different matter.
   Does this new testing require the lip biopsy???

-Considering moving to a optha from a opto

-Defiantly wanting to try something to try to hold this disease back. My eyes have been bugging me for years but I just became chronically thirsty 6 weeks ago.

The test is from blood, which is overnight expressed to the lab in New York State.   I was quoted $330.
*Pretty  sure  that does not included  the "special" shipping cost from Dr. office.
Email response from Immco:
The Tests Panels are as follows:

New tests:

093 : Early sjogren profile (includes 094-sp1;095-cA VI and 096 –PSP) Cost is of  $330 dollars

097: comprehensive Sjogren profile (profile (includes 094-sp1;095-cA VI and 096 –PSP, 001 ANA, 011 RF,045 SSA,046 SSB, 7 511 H & E minor salivary glands)

Modification of old tests:

076 : Sjogren's syndrome profile: will now include 094,095 and 096 in addition to 001,011,045 and 046

You can also find more information on each specific test from our website: http://www.immco.com/lab-services/test-services.aspx (diseases listed alphabetically)


Please let me know if there is anything else I can help you with.

All the best,

Lourdes Vazquez

Lourdes Vazquez-Mitchell, M.Sc.
Product Manager
Nova Century Scientific, Inc.

~.~ Thank you Andy ...I will add this to the tread.

[bjnc]

Andy,

It would be good to talk with your rheumatologist about the Early Test to make sure he puts stock in it and would use it to diagnose you if it's positive.  Also, I would get something in writing from the optometrist stating that you have dry eyes and how he/she came to that conclusion.  Then take it with you when you see the rheumy so you don't have to have anything repeated.

As has already been mentioned, even if he doesn't diagnose you right away, see if he will treat you anyway based on your symptoms.  It may take some trial and error to find the med/combination of meds to help.  Or it's possible that he could diagnose you with Undifferentiated Connective Tissue Disease, which means that you have symptoms and lab work indicative of an autoimmune disease but not enough to satisfy critieria for diagnosis of one specific disease.  It is an official diagnosis.

For example, in my case, I have Psoriatic Arthritis (autoimmune) which I was diagnosed with about 27 years ago.  I also was diagnosed by a rheumy with Sjogren's about 3 1/2 years ago.  When I switched rheumys about 2 1/2 years ago due to change in insurance, the new rheumy diagnosed me with Undifferentiated Connective Tissue Disease and called it a Sjogren's like illness and treated me like I have Sjogren's.  I had some positive bloodwork, very dry mouth, extreme fatigue but did not have dry eyes at the time. I have now switched to a different rheumy within  the Duke system because the new one comes to my city once  a week, and I was tired of making the drive to Duke every 3-4 months.  I will bring up the issue with him at the next appointment probably because now the ophthalmologist has told me that I do have dry eyes, and I have symptoms too.

All the rheumatologists agree that I have psoriatic arthritis but disagree on whether I have UCTD-Sjogren's like illness or actually have Sjogren's.  I'm treated by 3 meds for the psoriatic arthritis, an anti-inflammatory, a biologic drug, and another Disease Modifying AntiRheumatic drug.  I also take  Evoxac for dry mouth.  Nothing has really helped the extreme fatigue (Plaquenil did not help me.) 

So, I got kind of long-winded there.  All that to say, look for someone who will treat you no matter what the blood tests or criteria say.  And it may be that your meds will change over the years.  Something may stop working for you or you may develop side effects that necessitate a change in meds.  I have been on many meds over the years, mostly relatively high risk, and it looks like I may need to change again in the near future due to problems with low white blood cell counts.

The new rheumy had some really good ideas about options we could try for meds in the future and told me some things about Psoriatic Arthritis that no one had told me in the past.   So, if you 're not pleased with the first rheumy don't be afraid to try a different one.

Hope this helps.

[irish]

Andy, Welcome to this site and know that everyone here has been through their own form of @$%# on the way to diagnosis. As was said by others, the diagnosis does not always make much difference. I had been suffering with symptoms since around age 20 and did not get diagnosed til I was 60 years old and I am 70 now.

The tests can come back negative for years. The main thing is to get the symptoms treated and learning how to deal with a different lifestyle. One must adapt and learn to live with different priorities in order to preservere with chronic disease.

The one thing that you need to be aware of is that everyone has a different perspective of pain and suffering. The interesting thing is that the people who have been healthy most of their life that get slam dunked with a chronic illness seem to be more easily overwhelmed. Those of us who suffer for years and years at a very slow but steady pace are more or less affected differently. We have been miserable for so long in so many different ways that it becomes a way of life. To have someone finally say that we are really sick is a relief to us.  We long time sufferers are usually treated like we are mental cases and not treated very kindly by the medical community. I was so mad at one clinic who tyold me I didn't have Sjogrens, didn't have Myasthenia gravis (my high blood work was from my prematurely grey hair) and they advised that I have psychiatric counstling.

When I got diagnosed with the Sjogrens, Myasthenia, Hashimotos, severely low t-cells, I wrote them an 8 page letter explaining to them how to treat a patient with dignity and diagnose them properly. They were not happy with me!!!

The best thing you can do is find one doc that you can deal with who will treat your symptoms and take you seriously. Get treatment for the symptoms that are bothering you and develop a plan for a healthly lifestyle that will give you more rest and time for renewal. The one thing about chronic illness is that all of us learn a whole lot about ourselves and about life in general. In fact, I think we become better people because we have more compassion and understanding for others.

Plan your life in such a way that your financial needs are kept in check and live more simply and enjoy your family more. So much of the wear and tear in life these days is totally toxic to a person with autoimmune disease. We need less stress and more harmony. Plan ahead so you don't get waylaid. The spouse also needs to get involved in this as it is always hard to tell what lies ahead and being prepared is very helpful. Good luck. Irish

[paisley62]

Andy,

bjnc is quite right about Undifferentiated Connective Tissue Disease UCTD.  I was diagnosed with that before I got tested for Sjogren's, and it is an actual disease with it's own prognosis that can have some symptoms of Sjogren's Disease.  bjnc is correct that within three years it might, or might not,  advance into being Mixed Connective Tissue Disease (MCTD), which has a different (and more challenging) prognosis.  Or you could have something completely different that is not Rheumatological.

You are in what I used to call the the diagnostic "Twilight Zone".  The average time to get a diagnosis of many rheumatological diseases, for example Lupus, is five years, so it can be a very long journey to get diagnosed, and you may have something that you never heard of. 

You are way ahead of the game though, because you are getting lab-tested, and from the sound of it, you are getting the latest tests.

In my experience, the key to getting a diagnosis is twofold:  part of it is finding the right doctors, and part of it is getting the right tests.   

Try whatever medications doctors may offer, but keep moving forward and getting new tests.  This means if a doctor is not continuing to offer suggestions for lab or imaging tests that might lead to a diagnosis, then move on to find a new doctor - don't get stuck like I did for years on doctors who ignore, or even mock, you. 

The statement "Come back in six months", combined with no new tests, is one signal to move on to the next doctor.

If all of your Rheumatological tests are negative, or if you get a diagnosis of UMCD and think you have something else, try to pursue tests that internet reading suggests are appropriate to your symptoms.  Perhaps data from a lumbar puncture would be appropriate, or an MRI of your head, neck, and spine?  I don't know, as I don't know what all your symptoms are and am not a doctor anyway.