Author Topic: Hello - i'm new to SjS  (Read 11771 times)

Deimos

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Hello - i'm new to SjS
« on: June 07, 2011, 02:30:38 AM »
  Hello,
I'm 34 male from Poland. 2 months ago my rheumy dx me with SjS - I still don't meet required criteria for SjS but she is positive I have it. When my rheumy said I had SjS I felt a bit of relief because I was afraid of lupus diagnosis. The SjS diagnosis was made on the basis of some blood tests which showed:
- ANA - 1:2560,
- SSA positive (++),
- other autoantibodies negative,
- RF/CRP in normal ranges,
- SED was elevated in 2009-2010. 2011 shows normal SED levels (2 out of 2 blood tests),
- ASO elevated,
- gammaglobulins - slightly elevated.

I can consider my symptoms as very mild. First symptoms started 2-3 years ago when I had incidental days with very sore eyes because of dryness. Those incidents ended in mid 2009, but as my eyes did not produce enough levels of liquid it has been a cause to blepharitis - blepharitis being the only source of my physical discomfort at time diagnosis (2 months ago). I have started taking regular care for my eyelids and I don't feel the discomfort anymore - hope blepharitis will eventually go away (is this "futile" hope?). I had Shrimmer's test which showed the result of 10 mm within 3 Min's (the doc seemingly didn't know the test should take 5 Min's) - the result is not bad. What was your Schrimmer's test result when you were dx with SjS?

My rheumy wants me to do a lip biopsy - but I'm not sure whether I want to do it. I have been reading on some of your problems after lip biopsy. Even if the biopsy is conclusive and it gives the SjS label to my symptoms I doesn't rule out other AI diseases (only the passage of time can rule it out). Currently plaquenil seems the only treatment option to me regardless of the AI disease I have.
I haven't started any medications yet because I had my liver enzymes elevated and I'm currently taking some medicins to help my liver before is start Plaquenil - which is not neutral for the liver (known of causing fatty liver).

In 2010 I had gastroscopy and virtual colonoscopy done. My gastroscopy showed acid reflux - in course of treatment my reflux proved not to be responsive to treatment but again it does not cause any discomfort to me. Acid reflux seems pretty common among ppl with SjS and AI.

It's so difficult to accept the notion of chronic illness. Sometimes I hope my SjS will be mild (on the basis that my eyes do not hurt me anymore; my standard blood results are now better than 2 years ago - SED rate got back to normal, etc.) but then I read scientific facts - your posts full of suffering, facts that SjS does not go into remission and eventually overtakes your life and I come to conclusion that there is no escape, I can't resist the impression that it can only get worse.
« Last Edit: June 07, 2011, 04:16:23 AM by Deimos »

Rachel F.

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Re: Hello - i'm new to SjS
« Reply #1 on: June 07, 2011, 02:46:19 AM »
Hi,
I am glad you have posted your question here. I can only offer you my opinion by saying that everyone is different. I think any autoimmune disease can go into remission. I think you will find that people here are looking for help with a current problem or support during difficult times. Many people here have issues that have progressed, but I don't think that means that everyone who has an autoimmune disease reaches that point. Take care and all the best to you...
Rachel F.

anita

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Re: Hello - i'm new to SjS
« Reply #2 on: June 07, 2011, 04:18:07 AM »
Hi Deimos,

Welcome. 

I would give the lip biopsy more thought...before doing it.  You seemingly only have one very mild symptom effecting your eyes...with a what looks to be a normal schirmer's test (especially after only 3 minutes).  So my first thought is WHY do the biopsy?  What do you stand to gain?  Actually you will gain nothing that I can see.  Your SSA is positive, so "if" you have more symptoms fitting the criteria down the road, you already have enough to be diagnosed/treated with Sjogren's.  There are people that have antibody markers (for sjogren's or other AI disease) that DON"T have the problem...at least at that time.  You may have more symptoms later in life, but for now, I certainly would relax over the "accepting a chronic disease" feeling.   Right now, you should focus/accept the fact that you obviously feel pretty good and not "what if" what the future might bring.

Plaquneil is not really known to help just dry eye.  It usually provides some relief of fatigue and joint pain, which you don't have.  Some say it slows progression of the disease, but I have yet to find any actual study showing these results.  I would proceed cautiously with "treating" your condition based only on lab results and only blepharitis.  The eye condition has been known to respond well to simply washing the eye lid with baby shampoo 2-3 times a day.

Good luck

52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Joe S.

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Re: Hello - i'm new to SjS
« Reply #3 on: June 07, 2011, 06:36:48 AM »
Welcome Deimos. Glad to see your introduction. Some of us have posted what we are taking in our signatures to help others. I can not take MTX or Plaq, so I use alternative therapies. Management is the key to how rapidly this progress.

Try sleeping with a polar fleece mumps scarf. "Spoon Theory" will help you understand the ups and downs of AI diseases. Don't panic - anxiety can make a flair worse. Breathe in "I am", breathe out "calm" is a simple meditation that can help with pain levels.

www.ChakraForce.com Has tones that can help with dry eyes, dry mouth, and gland infections.
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Scottietottie

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Re: Hello - i'm new to SjS
« Reply #4 on: June 07, 2011, 08:30:13 AM »
Hi Deimos  :)

Welcome to Sjogren's world. If your rheumy would give you Plaquenil based on your positive SSA - why the need for a lip biopsy? (Plaquenil can slow down progression and in many people progression is very slow anyway)

A dx of a chronic disease is a shock to the system but there is life after SjS - honestly!

If you ever want to talk in real time SjSworld has a hosted chat at 7p.m. GMT on Wednesdays. All are welcome. Most hosted chats are on in the middle of the night European time!

Take care - Scottie  :)
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Never do tomorrow what you can put off till the day after tomorrow!

Pisces24

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Re: Hello - i'm new to SjS
« Reply #5 on: June 07, 2011, 05:41:44 PM »
I also would not recommend the Lip Biopsy unless absolutely necessary.  With your positive tests, I think that would be enough without doing more invasive procedures.  It took 6 years for me to get a positive diagnosis and I would have had at least a couple more "fishing expedition" type surgeries if I ok'd it with the so called Specialists I saw during that time.

Symptoms of SJS can be different. Myself thankfully, I don't have the bad symptoms that a lot of peoploe on the boards seem to have. Mine are: dry eyes (1 & 0) , dry mouth (lots of teeth cavities), dry sinuses (which sinus flushes help a lot with), some mild fatigue, a few spots on my lumgs they are watching and a lot of abnormal blood work that screamed SJS when they finally ran the correct tets. I definitely fit the "but you look fine" symptom of SJS. Don't dwell on what may or may not be coming down the rd with SJS.

Take SJS a day at a time and don't let it emotinally suspend your life.  None of us "Soggies" know what may or may not come.  You learn to listen to your body. It is hard accepting limitations but you can get used to a new kind of normal and enjoy your life.

Welcome to the Group!

irish

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Re: Hello - i'm new to SjS
« Reply #6 on: June 07, 2011, 09:05:13 PM »
Welcome to our site. It looks like you have enough positive blood work to give the doc a reason to diagnose you with sjogrens. It also sounds like you don't have a lot of other issues. Be aware that the sjogrens affects all secreting glands and this included the liver, pancreas, etc. It is good that your doc is checking your liver and seeing what the deal is.

If you are able to take the plaquenil it would be prudent to start it, I think. It is advised now to use the plaquenil as soon as possible to slow down the autoimmune attack on the body. The plaquenil helps to slow the inflammation that comes from the sjogrens. The use of plaquenil is more common now and the doctors are slowly learning that this is the thing to do--even if a person isn't showing a lot of symptoms.

If you have other symptoms that develop that the plaquenil doesn't touch then the stronger medications such as Imuran or methotrexate can be used. I also wanted you to know that even if you are not having pain from the gastric reflux it can still cause damage to your esophagus. Is there any other medication that you can use for the heartburn and reflux?? There is a drug called Carafate that can be dissolved in water to form a "slurry" and sipped. Usually just a couple of tablespoons of water is enough. This doesn't effect the secreting glands in the stomach, but it helps to coat the stomach and protect the tissues from the acid.

I think that this drug can interact with some other drugs so this has to be kept in mind. It works well though.

Good luck with your health care. Please keep coming back and joining our group. Irish ;D

P.S. Your English is very good.

buddybelle

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Re: Hello - i'm new to SjS
« Reply #7 on: June 07, 2011, 09:52:25 PM »
Hi:
I am new to SJS, but not a chronic disease. I have MS. I find that it is helpful not to let my illlness define me. A positive attitude helps me put my best foot forward and enjoy each glorious day I am fortunate enough to enjoy.
Good luck

Meld256

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Re: Hello - i'm new to SjS
« Reply #8 on: June 08, 2011, 12:57:34 AM »
Welcome to the forum, Diemos.  ;)

Others have given very good advice. I understand as a young person, a diagnosis of a chronic condition can be quite a shock, but as Scottie said, there really is life after a diagnosis and it can be a good life.  You have very mild symptoms, and they may very well stay that way. 

A wise person here wrote that when you read things here about people and some serious complications, that can be kind of scary to someone new to this.  But that doesn't mean that will happen to you.  There are many, many people out there with Sjogren's who have mild symptoms like you, and they aren't the ones you see here on these boards often.  The reason for this is that they are out working, playing, raising families and enjoying life!  :D  They are living with few problems.

That said, it's a personal decision to have a lip biopsy, but not sure why you'd want to do that since your blood work stands for itself.  It actually can be a positive that you know what the diagnosis is, so that you can take action. Plaquenil is the most common drug to slow down the progression, and since you have mild symptoms, it may keep other symptoms at bay for a very long time, or you may never have bigger problems.
It does not need to take over your life.  It doesn't necessarily only get worse.  But feel free to bring any questions or concerns here anytime.  We understand what you are going though...and we will look forward to hearing more from you.

Take care,
Melinda

nancylee

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Re: Hello - i'm new to SjS
« Reply #9 on: June 08, 2011, 03:29:00 AM »
Woo-hoo!!! another man!

Welcome. This is a really nice group of people. I hope you get all your questions answered and I hope you contine to be a mild case. You will enjoy a lot of the conversations. Also, you may learn a few things about how women think as well...

Nancy

stephL

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Re: Hello - i'm new to SjS
« Reply #10 on: June 08, 2011, 04:40:33 PM »
Welcome, Deimos. I hope you make lots of new friends here. I'm glad you found us!
"Unlike weakness, fatigue can be alleviated by periods of rest." -Wikipedia: Fatigue (medical)

Deimos

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Re: Hello - i'm new to SjS
« Reply #11 on: June 13, 2011, 06:42:31 AM »
  Thank you for all the answers, warm welcome and support :)

I'm going to take advantage of your experience, ask questions and build my knowledge.
Currently my body does not need any help - my mind does. I feel great atm, I'm physicaly full of energy but the thought of chronic sickness is haunting me 24hours a day - I wake up with the thought and go to bed with it. :( Can't get rid of that thought :(

I also wanted you to know that even if you are not having pain from the gastric reflux it can still cause damage to your esophagus. Is there any other medication that you can use for the heartburn and reflux??
I use linen seed to cover my stomach from acid.

I wonder how you cope with some specific day-to-day problems. I need your advice on how to approach a mortgage loan.
My wife delivered a son 1,5 months ago and we need to move to a bigger flat - current one is really small. Repayment of the loan will not be a problem provided that I can keep on working for 7 more years. What would be your recommended attitude towards mortgage loan in my situation?

Joe S.

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Re: Hello - i'm new to SjS
« Reply #12 on: June 13, 2011, 07:39:24 AM »
The only suggestions I have is that:
1. It is always a buyers market. Look at 20 properties before you make an offer.
2. All offers should be made with "subject to" clauses to protect your earnest money.
3. Have the property inspected before it is purchased.
4. There may be a new home buyers insurance program. This worked for my daughters advantage (new appliances).
5. If you see furnishings that you would like, include them in the purchase offer as negotiating points. My daughter got an outdoor grill with her house, washer, dryer, and other appliances that made starting a new home much easier.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
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Deimos

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Re: Hello - i'm new to SjS
« Reply #13 on: June 13, 2011, 08:00:55 AM »
Joe - thanks for your answer. I think I should make my question more precise.

I just wondered how should I approach the mortgage loan in the context of SjS. SjS may impair may ability to work so it's mentaly difficult to take mortgage atm and I wonder what attitude would you reccomend. What are your experiences with such life-long obligations and SjS?

Meld256

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Re: Hello - i'm new to SjS
« Reply #14 on: June 13, 2011, 09:28:12 AM »
Hi Deimos,

I think I understand your question. First of all, congratulations on the baby! That is wonderful news.

It sounds as if since you are already worrying about your future health, a child and needing to buy a home is putting more pressure on you. I believe I can understand that.
You are being very responsible about thinking of how much to spend and if you can pay. Actually, more young couples should take "life situations" into account, and many times they don't. Do you know what I mean?  Such as, they are both working when they buy a house, maybe one child or no children, no health problems and they take a large loan for as much as they can afford.

They can pay it as long as the income stays the same.  But, as things tend to happen, one person may have a health problem come along where they can't work as much, or the company lays them off, there are more children born than they might have expected, etc. And soon, that fat mortgage they could afford before, they can no longer afford. I'm NOT trying to scare you more, I'm saying you are being smart about thinking of everything.

However, you mustn't let SJS rule your life.  Or the thoughts of "what might happen".  If you buy a home so that you can have a good cushion of savings, too, you should be fine. Meaning if you can afford the house and still be able to save, put away for retirement, etc.
It concerns me that you are haunted by what might happen to your health down the line. I hope you don't mind me suggesting that it might be a good idea to find a counselor who deals with chronic illness to help you deal with these worries that are tormenting you. Just a few talks with someone might really help. I think the mental part of this is sometimes the hardest.

Please remember that you have a group here supporting and encouraging you. I hope this helps.
Take care,
Melinda