Author Topic: Hello - i'm new to SjS  (Read 11768 times)

Deimos

  • Guest
Re: Hello - i'm new to SjS
« Reply #30 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 :)
« Last Edit: April 26, 2012, 04:32:56 AM by Deimos »

Gayle

  • Guest
Re: Hello - i'm new to SjS
« Reply #31 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

Deimos

  • Guest
Re: Hello - i'm new to SjS
« Reply #32 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' :)
« Last Edit: April 26, 2012, 06:38:23 AM by Deimos »

Meld256

  • Guest
Re: Hello - i'm new to SjS
« Reply #33 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

Deimos

  • Guest
Re: Hello - i'm new to SjS
« Reply #34 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.
« Last Edit: April 27, 2012, 04:46:39 AM by Deimos »

Deimos

  • Guest
Re: Hello - i'm new to SjS
« Reply #35 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.

Gayle

  • Guest
Re: Hello - i'm new to SjS
« Reply #36 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

Deimos

  • Guest
Re: Hello - i'm new to SjS
« Reply #37 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.

Meld256

  • Guest
Re: Hello - i'm new to SjS
« Reply #38 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

Deimos

  • Guest
Re: Hello - i'm new to SjS
« Reply #39 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
« Last Edit: April 08, 2014, 08:46:39 AM by Deimos »