Sjogrens World Forums

Sjogrens Topics => Living Life In Spite of Sjogren's => Topic started by: Deimos on June 07, 2011, 02:30:38 AM

Title: Hello - i'm new to SjS
Post by: Deimos 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.
Title: Re: Hello - i'm new to SjS
Post by: Rachel F. 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.
Title: Re: Hello - i'm new to SjS
Post by: anita 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

Title: Re: Hello - i'm new to SjS
Post by: Joe S. 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.
Title: Re: Hello - i'm new to SjS
Post by: Scottietottie 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  :)
Title: Re: Hello - i'm new to SjS
Post by: Pisces24 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!
Title: Re: Hello - i'm new to SjS
Post by: irish 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.
Title: Re: Hello - i'm new to SjS
Post by: buddybelle 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
Title: Re: Hello - i'm new to SjS
Post by: Meld256 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
Title: Re: Hello - i'm new to SjS
Post by: nancylee 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
Title: Re: Hello - i'm new to SjS
Post by: stephL 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!
Title: Re: Hello - i'm new to SjS
Post by: Deimos 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?
Title: Re: Hello - i'm new to SjS
Post by: Joe S. 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.
Title: Re: Hello - i'm new to SjS
Post by: Deimos 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?
Title: Re: Hello - i'm new to SjS
Post by: Meld256 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
Title: Re: Hello - i'm new to SjS
Post by: Deimos on June 13, 2011, 12:44:10 PM
Melinda - thank you for your feedback.

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.
I'm eager to listen to all the ideas you have and I'm already aware that I may need a few talks with specialist.

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.
I know exactly what you mean - taking as high loan as the bank gives is stupid to me. A lot off ppl has done so not taking under consideration that interest rates may go up - in Poland a lot of ppl took loan in CHF because of low interest rates in Switzerland not taking under consideration exchange rate risk. PLN became weaker in relation to CHF which drives monthly instalments much higher - PLN/CHF rate was at 2,00 (3 years ago), and the exchange rate has risen to 3,30 (65%). A lot of ppl have diffculties in paying of the debt now.

I would like to base my decisions regarding mortgage on a good grounds. Has anyone of you seen some statistical data on how long in average ppl are able to work after SjS diagnosis?
I have read somewhere that it takes in average 8-10 years to develop full blown symptoms. Does anyone of you have access to this kind of research?
I understand that noone can say for sure how the sickness will develop but some statistical research is the best basis i can think of - I cannot base my decisions on pure belive that the sickness won't progress.
Title: Re: Hello - i'm new to SjS
Post by: buddybelle on June 13, 2011, 01:59:39 PM
Hi:
I am by no means an expert on real estate. However, if you live in the US real estate can be a risky investment. Housing prices continue to decline and it was just reported today that the major banks have a growing back log of properties that are having to be "short sales." As these properties are dumped on the market, housing prices are expected to go down even more.

That being said, if you have the money to purchase and feel comfortable that you can remain in the home until prices rebound then home ownership is a feasible option.

I think the days of purchasing a home as an investment are gone for a while.

Good luck,
Buddybelle
Title: Re: Hello - i'm new to SjS
Post by: Joe S. on June 13, 2011, 02:42:49 PM
I would not say anything about Sjogren's and do the best you can to work the 7 years and get it paid off. If possible before the end of the 7 years.
Title: Re: Hello - i'm new to SjS
Post by: nancylee on June 13, 2011, 04:14:56 PM
My advise is to try to not let this change your life. Buy a beautiful house. Plan wonderful vacations. Have more babies, Live live live!!!!
Title: Re: Hello - i'm new to SjS
Post by: nancylee on June 13, 2011, 04:18:56 PM
ps  I am cutting off all my hair tomorrow. I am tired of worrying about how much hair I am losing...

Title: Re: Hello - i'm new to SjS
Post by: buddybelle on June 13, 2011, 05:46:42 PM
Hi again:

It is difficult to balance living for today with planning for tomorrow. Each person has to find their own comfort level.

I have tended to be cautious in making my life decision because I am more security oriented. However, as I get older I am getting more inclined to live for the moment.
Title: Re: Hello - i'm new to SjS
Post by: Deimos on June 14, 2011, 01:11:15 AM
I am by no means an expert on real estate. However, if you live in the US real estate can be a risky investment. Housing prices continue to decline and it was just reported today that the major banks have a growing back log of properties that are having to be "short sales." As these properties are dumped on the market, housing prices are expected to go down even more.

In Poland the prices dropped when the global crisis started - but generally as we are developing country there is long-term tendency for the prices to go up. The flat I bought in 2006 has gained no less than 40% in value up till now. Current prices seem quite reasonable so I consider the investment in real estate in Poland as safe.
Title: Re: Hello - i'm new to SjS
Post by: Joe S. on June 14, 2011, 03:52:29 AM
In the US our prices have dropped by about 50% or a little more. A report from Argentina suggest that there are three waves to the foreclosure cycle as the bankers make obscene profits and take over the national currency. The last wave in the foreclosure cycle is scheduled for December of 2011. 2012 is scheduled for more "food shortages".Things will turn around and get better starting in 2013 if there is no more run-away greed.

Title: Re: Hello - i'm new to SjS
Post by: Meld256 on June 14, 2011, 11:29:13 AM
I'm glad the housing market is so much more stable there in Poland than here in the US.  So, that seems to be one big concern you don't need to deal with. Good!

Now, your health concern question: I don't know of any statistics out there (and I am no expert in any way) that state how any particular person's Sjogren's will progress in any length of time.  I can say that it seems that for most with very mild symptoms like you, it would be a very slow process, meaning many years.

Any stats I've seen are for people who aren't diagnosed until they see severe symptoms like when I was diagnosed; fatigue, joint pain, eye and mouth/teeth issues, not able to function normally.  And that says that a third of those will stay the same, a third decline, and a third go into remission.  But part of the frustrating part of this is that we do not know who that will happen to.
For you, it seems that you would have never known unless you had the blood work. So this is a very, very slowly progressing thing. And you may NEVER have any serious problems.

You have a lot going on! A new diagnosis, a new child, and needing to buy a new home. I think my head would be spinning! 
I would suggest to give yourself some time to deal with the diagnosis; it takes all of us a long while.  It's a process we need to allow ourselves time with...

I don't think anyone can advise you about buying the house. It's really up to you and your wife. I can tell you are a responsible and intelligent person. You are looking at all avenues, and that's good. 
Please don't "overthink" this to the point you cannot enjoy all the good things in your life. I'm assuming you have a good career, a wife, a new child and you are able to buy a new home. You seem to have many blessings. I wish you well in your decision and wish you happiness and peace of mind.
Take care,
Melinda
Title: Re: Hello - i'm new to SjS
Post by: Meld256 on June 14, 2011, 01:23:31 PM
Looking at my post again, I certainly didn't mean to sound like a "send-off" .  Keep us posted, ok?  You can bring all concerns here anytime, about anything.  We are here to support and encourage one another.  ;)

You may want to start a new topic if you have more questions, and that way you may get more responses. This is a very helpful group; I know they have made a huge positive difference to me.
Title: Re: Hello - i'm new to SjS
Post by: buddybelle on June 15, 2011, 10:29:41 AM
Deimos:
Title: Re: Hello - i'm new to SjS
Post by: Patze on June 16, 2011, 07:29:16 AM
Hi Diemos,

Let me also welcome you to the SJS World and family!  I too hope that you find the board as wonderful and informative as I have!

Take care of yourself -

Patze
Title: Re: Hello - i'm new to SjS
Post by: irish on June 16, 2011, 10:00:30 PM
Deimos, I am the old grandma and I am quit slow to spend money. I have to think about things and run a calculator on things to see what is the best deal in the long run.

If it was me, knowing what you know about your health, I would buy a house that is older but still in good shape. I would try to keep my mortgage as low as possible. This sjogrens is really hard to predict and no one ever really knows what the future holds. Also, no one knows what the future holds anyway!!!

The bottom line is you want to live comfortably and be able to support your wife and child without going overboard. I wouldmake sure to budget my income and save money every month for the future. It may be that you wife will be working after the kid/kids are in school and that is something that would help.

In the US there are many couples who are now having the dad stay home and be a house husband. This has come about due to the high unemployment rate. Also, there are many women who are making more money than their husbands and it is more logical to have mom work full time and have dad stay home. If your health would happen to progress to the point that you can't work and you would have to stay home this lifestyle might appeal to you. You would enjoy it much better after the children were able to go potty by themselves. ::)

I hope that you can find a great house that fits your needs. Joe is right about not buying the first one. Take your time cause often the right one is just waiting down the road. You will know it when you see it. Good luck. Irish ;D
Title: Re: Hello - i'm new to SjS
Post by: Jen_in_GA on July 09, 2011, 06:54:59 AM
Just dropping by to say HI! Welcome to the group.  :) I have family that lives in Poland. Hopefully I'll get to go visit them one day.
Title: Re: Hello - i'm new to SjS
Post by: Deimos on December 05, 2011, 01:08:07 AM
   Hello,
Last Friday I started taking budenofalk. My current diagnosis is AIH type 1 + secondary SjS.
I have done fibroscan in order to check the stage of fibrosis. It showed f0-f1 fibrosis - and the doc said I had my liver is in quite a good shape. It seems things have been caught early. We are going to check my ALT/AST  levels in 3-4 weeks.
 
In November I promised my wife that I would finally get things right with doctors.
I was afraid of my blood results after 7 months of my break from doctors. I have done tests on Thurdsday: ALT was 83, AST 43, blood morfology - perfect. I'm happy the results did not go sky-high (I was afraid of it as there was no treatment, some alcohol and antibiotics).
My doc puts everyone on budenofalk - he seems to be very patient-oriented, friendly and he has an opinion of a good specialist.

AIH forum contains defenitely the largest number of "great news/remission" posts. Therefore I hope my AIH can be well controlled and I will be in remission soon.

I feel really well, I'm so full of energy. I have sometimes light symptoms form my digestive tract.

I  hope that I'm a "light case" and the pills will really help to get all the results within proper ranges and will lead to long-time remission.
Title: Re: Hello - i'm new to SjS
Post by: Deimos on April 26, 2012, 01:07:44 AM
Quick update from me :)

I'm still on budenofalk (steroid) but dosage is reduced due to improvement in my liver results.
ALT & AST are already in normal ranges :) so my pills kicked in really fast.
Even drinking some more alcohol which I cannot resist during holidas did not increase my liver results.
I observe the trend that the more I drink alcohol the better I get ALT & AST results ;)
I do not have any side effects of budenofalk.

Additionaly taking steroid (?) seems to improve not only liver results but also my saliva flow :). Since starting budenofalk I notice that reduction of saliva has stopped.
In the last few days I have started to notice periods of saliva overflow :) and I even did not start taking any SjS oriented drugs :) - that's amazing becasue after reading all this articles and opinions that steroids I did not expect any help with saliva production from my current drugs.

Now that my liver results have really improved it may be time to consider if I should start taking some pills for SjS.

I still feel really great - I'm so full of energy... working during the day, spending time with family after work and chasing my interests when family is asleep :)

I came back to playing in amateur soccer league and just like in good old times I'm the one in my team who can run at full speed for the whole game and still has energy for more - diagnosis did not change it :)
Title: Re: Hello - i'm new to SjS
Post by: Gayle on April 26, 2012, 05:41:19 AM
Hi Deimos,

I am newly diagnosed as well so I understand your 'mental' concerns too. There are many people who live a normal, active lifestyle with SJS. There are tennis players, soccer players, and just us normal people. Just pay attention to your body and you will be fine. Enjoy your new baby and stay in the lane of the living! Curious how your English is so good, I wondered if you had been an exchange student. I have hosted 33 students and some were from Poland. Will visit one day, I hope soon. Keep following Dr orders, sounds like they have done very well with you so far. Stay as an advocate for yourself! Enjoy life, it is beautiful, ever changing and even sharp turns in the road can just show you a new view that's just as wonderful!
Welcome!,
Gayle
Title: Re: Hello - i'm new to SjS
Post by: Deimos on April 26, 2012, 06:27:06 AM
Gayle - you show the kind of attitude I'm trying to employ.
If everything goes as well as my up-to-date treatment I will find mental comfort and peace :)
I think that I just need some more time and some more good results :)

I have been polishing my english for years.
School + a lot of internet surfing (english sites) + computer games in english + books in english were key in my english education.
Being already really good in english I went to Australia for a year which let me improve my spoken communication skills. A few years ago I also picked up international studies - ACCA (it's kind of MBA in finance) which are in english. I use english at my work etc.
To put it simply I use english in my everyday life although I live in Poland :)
You know - world is a global village now and good english is a 'must' :)
Title: Re: Hello - i'm new to SjS
Post by: Meld256 on April 26, 2012, 09:01:26 PM
Deimos,

It's good to see you posting with us again!  ;) 

And, so very happy for you that you're feeling so much better than last summer.  That's wonderful. As we said last year, it really takes some time to adjust to all this, and sounds as if you're doing really well.

That's awesome that you're back to the soccer leaque, too.  ;)  Now I must be a bit nosey; may I ask if you ended up buying a home?  You don't need to answer that, of course, I'm just being curious.  Just so good to see that you're doing well.
Welcome back! 

Melinda
Title: Re: Hello - i'm new to SjS
Post by: Deimos on April 26, 2012, 11:44:17 PM
Meld256 - we moved in to new flat october last year :)

To be honest my physical feeling is currently the same as last summer. All the time I have been feeling really well - now when treatment improves my results and gives hope that there will not be progression (I hope for complete remission) of the sickness I have a slightly better overall attitude :)

During day-to-day activities I don't feel sick at all - I feel better than most healthy ppl around me. All around me complain (it's typical polish feature to complain) and I feel great - at work my co-workers complain that air conditions makes their eyes dry (I don't have the impression at all!), at home my wife complains the air is dry (I don't have have the impression at all!), coworkers complain that the air-pressure is low they don't have energy - again I don't know what's going on, currently after a high air tempereture changes in Poland a lot of ppl around me get flu - I don't (and I'm on immunopressants).
I just have to eradicate the 'sickenss idea' from my mind as my body seems to be really strong. I plan to start running every day in the morning - after intensive physical excercises your mind clears and it can be a perfect solution for a troubeled mind. As teenanger I was long distance runner I was pretty good at it - now I have a plan to come back to running and even take part in marathon run :) As I'm fit and I play soccer regulary i don't think that running long distances could be too overwhelming for my body.
Title: Re: Hello - i'm new to SjS
Post by: Deimos on August 13, 2012, 11:22:33 PM
My story continued...

I took me a lot of time to finally visit gastro... (gastroentrologist or something like that). I have had blood on my toilet paper for quite some time and some other minor issues with my digsetive tract. When I told doc about my symptoms he suspected I might have had Colitis Urcelosa. I had undergone USG of my belly, gastroscopy and colonoscopy  ;D

USG was perfect, gastroscopy showed gastritis and erosions in my stomach and colonoscopy showed that bowels are ok  :) :) :)
I started taking meds for my stomach. Gastroscopy showed no Helicobacter (Helicobacter was successufully eradicated 3 years ago) :) I'm also off budenofalk (steroid) which my have had some contribution to my gastritis.

I have perfect result for my liver - ALT, AST, GGTP, bilirubin etc.
My autoantibodies dropped rapidly when on budenofalk - 1,5 years ago I had 1:2560 and s-SA antiobodies. Results from 2 weeks ago show 1:160 antibodies - no specific antibodies.
Title: Re: Hello - i'm new to SjS
Post by: Gayle on August 14, 2012, 03:39:10 AM
Deimos!
Hi! Glad to hear your doing so well! I am glad you saw the GI doc, it sounds like he did thorough exam and you are good to go! Are you still not on Plaquenil? I am so glad you are continuing your exercise programs and following through with life! Congrats again! Keep up the good work of following through with your doctors, keeping yourself monitored and enjoying your family and life. Your doing great!!

Gayle
Title: Re: Hello - i'm new to SjS
Post by: Deimos on August 14, 2012, 04:21:28 AM
Thank you Gyle for a good word :)

I'm still not on plaquenil... I was taking steroid and my rheumy decided to wait with plaquenil. I haven't visited my rheumy for a few months - I'm going back to her end of September. I want my stomach to cure (a bit a least) before starting plaquenil or something like that.
Title: Re: Hello - i'm new to SjS
Post by: Meld256 on August 14, 2012, 05:06:18 AM
Deimos,

Good to see you posting, and it's great to hear you are doing so well!  ;)

I apologize I haven't replied sooner from in April.  Wonderful about the new flat, that you are running, playing soccer and have an excellent attitude about your health.  Always nice to hear when someone is doing well.

Good for you! As Gayle says, following through with the docs, monitoring everything, and having your great attitude about living your best life is the very best any of us can do.

Thanks for updating us with your good news.  ;)
Melinda
Title: Re: Hello - i'm new to SjS
Post by: Deimos on April 08, 2014, 08:44:28 AM
   Hi again,
I'm droping here from time to time to read your posts but I haven't posted here for a quite long time now.

As to my health I do not take any meds atm - I have almost forgotten about doctors :)
Generally I feel great. My eyes and mouths does not become any drier.
I do not feel any discomfort from my eyes and sometimes I have a feeling of a little dryness in my mouth.

I was concerned lately about my kidneys as I go more often to toilet and my urine seems to be foaming. I have given a few samples of this foaming urine to lab and tests for protein came back negative. All other results of urinanalysis are negative except for urine specific gravity which is too low. On the other hand my Creatinine, Cystatin C, eGFR, electrolytes and BUN are perfect and do not show any sign of deterioration (my recent blood results with regards to kidney are even better than results I had 2 years ago).
I have visited a good nephrologist last week who is experienced in dealing with AI dieases and according to him my kidneys are healthy and there aren't any more tests needed - that was a big relief to me. I left nephrologist with suggestion to monitor my blood pressure as I'm borderline beetween normal blood pressure and too high blood pressure.

I have also done again ANA tests. SSA are back to strong positive and all other results autoantibodies are negative. I'm glad nothing new came out during that tests especially that I have been off meds for 1,5 year now.

Knowing that my kidneys are ok I have appointed visit to my rheumatologist.

Few years after my AI disorder was diagnosed I'm not afraid of the future any more. I have the feeling that my disease is either progressing very slowly or not progressing at all. I'm also aware that there is full arsenal of meds that can help me - I do regular tests so if anything comes out it will be detected early.
I think now that I need a healthy lifestyle and maybe some meds to be in a good shape (not the opposit way around :) ).
I'm glad that things like 'where to go on holidays', 'what activities to plan for my 3-year old boy', 'which lens to choose for my Canon camera' are my current concerns - possible health problems is no more a notion that troubles me all the time.

In Poland we have a beautiful spring now and I've started preparation for 10km running. I will take part in a 10km race end of June. I train everyday and 45mins is my goal for the run.

Good luck girls & boys