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SebastianCRO
01-20-2010, 03:04 AM
Hi 2 all.

I was diagnosed WG,8 mnths ago.. 1st it was like pneumonia,but when d temp didnt go down and after 3 weeks of testing I had a diagnose and that was WG.. (but lucky 4 me,i had it only on my lungs,and was veery early diagnosed)
After 5 week @ d hospital i was released,received 6 puls "cyclophosphamid" treatments (every 4 weeks) .. and after that a lot of medication.

( now im on -> 1 x 15 mg of DECORTIN - prednizone, 3 x 50 mg ENDOXAN - ciklofos., 2 x 980mg SINERSUL - sulfametoksazol + trimetoprim and 2 x 20mg TARGET PLUS - omeprazol )

Finally i found ure page,and hope to seek and share that little information(and EXP) that we have on this very unknown and rare disease.
Specialy in CRO very little is known.

Soo,again HELLO TO ALL,special TO ALL WG diagnosed people - NEVER GIVE UP ;)
have a nice day


Sebastian

Sangye
01-20-2010, 03:17 AM
Hi Sebastian,
Welcome to the group! I think you're our first Croatian member. Your English is just fine--don't worry about that.

I'm glad you got diagnosed quickly. Yes, please post your other meds. That helps us answer questions. I love your message "Never Give Up." Your positive attitude will go a long way in helping you to get healthy again. It also helps other Weggies to hear it! :)

SebastianCRO
01-20-2010, 03:34 AM
thnx :)

ill post d meds as soon as posible :)

elephant
01-20-2010, 04:04 AM
Welcome Sebastian. Glad you made it here. You did just fine on your English.

pberggren1
01-20-2010, 04:41 AM
We are all here for you Sebastian. I'm glad that you were able to find this Forum. It has been a big help for me. You will find it a little overwhelming at first but will soon get used to it.

katwoman
01-21-2010, 08:16 AM
Welcome to the group Sebastian!

Its wonderful a wonderful website and its lovely to know that no matter how many waters or how many miles between us, we all we have support right here at our finger tips!!

pberggren1
01-21-2010, 11:06 AM
This is truly Providence.

SebastianCRO
04-06-2010, 10:05 AM
Hi all. I just wanted to say hallo to all of my WG friends,
I haven't written for a while now.

And bring a little update on me.
(now if that isn't sounding egocentric)

Because I read a lot of ure topics and just have a need to share something with u all,hope u don't mind. (if this is not d place,i would ask the admin to move my topic to "our stories" topic
or just pm me,ill make a new one)

The big change was Last week.

My MD changed my med.
My blood work is getting better and better so I got instead of Endoxan(50 Mg) 3 a day
to
once a week Metotrexat(7.5 Mg) and a day after the metotrex. 5 Mg of Folacin(folic acid).
And decortine was reduced to 10 Mg a day.

I even went to a Immunologist(what I heard and seen,he is the best in our "region" so I'm kind off happy about that)
He said i had a „nice“ journey and holding up very nice.Only that he had a better exp. with the endoxan and he would not go with the metotrexat.But that is his personal opinion and wouldn't rule over my doctors choice.

Whats ure exp. on that choice of medication ?

In general I'm feeling better,even that good that I'm looking for a job(despite recession I'm keeping my chin up to finding one :s ) We have "Detroit" like situations here on every corner.. so its hard. hope on ure side of the world its a little better. (and ure positive about the new Health care reform)

I event went to a little road trip(to celebrate my birthday)
to the coast/Adriatic sea with my girlfriend
(here are some photos so we can all forget us for a bit)

http://www.imagebanana.com/img/w6ljqmhr/thumb/trip5.jpg (http://www.imagebanana.com/view/w6ljqmhr/trip5.jpg)http://www.imagebanana.com/img/jw3ue2y1/thumb/trip6.jpg (http://www.imagebanana.com/view/jw3ue2y1/trip6.jpg)http://www.imagebanana.com/img/zbaiocaf/thumb/trip7.jpg (http://www.imagebanana.com/view/zbaiocaf/trip7.jpg)http://www.imagebanana.com/img/q0vhi29j/thumb/trip9.jpg (http://www.imagebanana.com/view/q0vhi29j/trip9.jpg)


We even went for bicycle's rides,yes, I was more of the bike than one but i ain't giving up that easy.
It was relay relaxing. (although my knees and muscles hurt after)

Now I'm just waiting for my new blood work(and hoping to see some improvements with the new drugs)

My best wishes to all of U out there.
Writing u soon.
Sebastian

Ps..
PM me if u are on facebook,so we can be friends there.

elephant
04-06-2010, 11:21 AM
So glad to hear you are doing great. Your medicines are pretty low dose. That is good. Wish you the best and hope you find a job that you love. :)

Sangye
04-06-2010, 11:48 AM
Nice to hear you're doing well, Sebastian. I hope you have even better days to come. :)

Col 23
04-07-2010, 12:21 AM
Welcome Sebastian. Sounds like the doctors have you Wegs under control. Glad to see you are having fun. Sorry I am fairly newly diagnosed Dec 2009 so still learning about medications so cant answer your questions. Maybe someone in the group will sort you out. Hope all continues to go well.
cheers Col 23

Lola
04-07-2010, 12:34 AM
It's nice to meet you, Sebastian. I'm glad you are able to be so active and that you're having fun! THe vacation photos are great. I've read that Croatia has some beautiful seaside destinations.
Please keep us updated.
Lola

Terri
04-07-2010, 10:42 AM
Sounds like things might be under control for now.
Hope it stays that way for awhile.
The pictures look inviting. Glad you were able to enjoy.
I go to face book sometimes. I haven't updated for some time.
What are you under? I will look you up.

Sangye
04-07-2010, 11:27 AM
How are you doing, Terri?

SebastianCRO
04-07-2010, 09:14 PM
@ Terri - u can find me by tiping in - Sebastian Brletic ; from Zagreb or Croatia :D
hope u`ll find me :)

take care
seb

jola57
04-08-2010, 11:45 AM
Hi Sebastian and welcome. Glad you found us, it will be interesting how this disease is treated in Croatia.

Terri
04-08-2010, 12:14 PM
Hi Sangye,
Thanks for asking. I've said it before that if I make it through April I will have gone a year flare free. I don't think it will happen. For a few weeks now I've been having pain in my legs more and sometimes my ankle and calf feel like they are on fire. Even my feet hurt more. Sometimes I have to wear compression stockings to help with the pain. I'm looking for excuses as to why it can be and have come up with a few so I don't know.... I have an appt on the 12th with my rhemy. I'm not looking forward to a Pred increase. I'll let you know what happens.

elephant
04-08-2010, 09:06 PM
Terri how much prednisone are you on now? Glad your seeing your Rhemy April 12 on a Monday! Good luck and hope that fire pain in your leg will go away real soon!

SebastianCRO
04-08-2010, 10:05 PM
Hi all.
Since a while now I had an idea of coming over (to zi USA)
- that was my dream since i was like 10 to go there and explore,try to "live the life", meet new people ... and so on..
and now,when I got "sick" i had to cancel my collage, my work, so mostly I'm at home, spending my days doing nothing "important" so to say.

Sooooo

I was wondering. I would like to contact someone in the states,like the mayo clinic or a doctor(s) that make great things happen with diagnosing Wegeners.
To ask them if I can somehow help in the research. Trying new meds and stuff. I had a chance to be useful in some ways and hopefully See some parts of the states.

my Q for u is.
Is that even possible,do they need someone,whats ure personal opinion on that and to whom can I send an inquiry.

thnx
sebastian

Sangye
04-08-2010, 11:36 PM
Sebastian, it's great that you're thinking about being useful! The major centers all have ongoing research studies. Each study has criteria for participants. Usually the way they work is that you go to the center for exam and lab work every few months and maybe take a trial drug. The best thing to do is contact each center's Research Director and ask.

Here's the link to JHU's Vasculitis Research Dept
Vasculitis Research at the Johns Hopkins Vasculitis Center (http://vasculitis.med.jhu.edu/research/research.html)

Here's the page with info for International Patients
Appointments at the Johns Hopkins Vasculitis Center (http://vasculitis.med.jhu.edu/aboutus/appointments.html)

Sangye
04-08-2010, 11:39 PM
Terri, are those the only symptoms you're having (leg, ankle pain)? If so, please call your doc today. That could be blood clots. That needs to be ruled out. Please don't wait-- it could be life-threatening. Make sure your doc knows that Weggies are 23% more likely to develop clots than healthy people.

elephant
04-09-2010, 04:20 AM
Hope you make it here to the states Sebastian. You will love it here and also feel great knowing you are getting great care with a Wegener's specialist. You only have one life to live!

Sangye
04-09-2010, 06:07 AM
If you come here, make sure you bring traveler's health insurance.

SebastianCRO
04-09-2010, 06:38 AM
ill try to come.. but theres a lot of "buts" in there now.. first I have to make some $ by selling my motorcycle...
i was looking on the map,Baltimore(john hopk.) is a nice place to stay in.. 1st there are the RAVENS :) (to be true I'm a A BIIIG steelers fan) :P
and also its very close to Washington DC, NY .. and a lot of interesting places ..

ill try to consult with my MD,Imuno and some state institutions(health dept) if they can be of some assistance($+VISA guarantee)

have a nice night(on my side is 10.38 PM)
and a happy new day..

best wishes
Sebastian

SebastianCRO
05-14-2010, 09:14 AM
hi all..
just had a need to see u all and type a little.

the last 3,4 weeks were for me like the beginning of my WG journey.
It was all going very well until I got of the Endoxan(3x50) and got 3x2.5mg/week of MTX.. the other meds stayed the same.

First week it was al good, I felt a loooooooot lighter because i got rid of Endoxan,but soon,the week after it al got to me.
Leg pain, joints, jaw was hurting and become very sensitive, fingers, got the WG rash all over my legs,feet..
and so on the third week it got so bad(pain all over my body,couldn't sleep, meds didn't help),
I went to my MD, done all the test, normally ANCA was up,so we knew WG had a word to say here. ( interesting,al other blood test, and my lungs were better )
but my doc and I didn't gave the "flare" a chance so we got back to endoxan(3x50/day) and upped the dosage of prednisone to 40 for 3 days,and now decreasing it 5 mg a day... till 10mg

tomorrow I am on 30, feeling good, have just a little pain in my fingers,and am hoping thats the way it will stay now.. so i can try to go back on Mtx or some other "nice" drug :)

hoping u all are doing better
greetings
Sebastian

ps..
for now my USA trip is postponed :S

Sangye
05-14-2010, 10:53 PM
Well I'm sorry to hear about the Wegs flare AND your US trip being delayed. How long were you on ctx (endoxan) before this happened? Were you also on pred?

jola57
05-14-2010, 11:25 PM
Hi Sebastian, sorry about your flare. It happened the same way for me after 6 months of cyclo (like your endoxan) I flared even befor going onto mtx. How long were you on endoxan? My doc put me back on cyclo for 12 months and now I have been on mtx for 8 months and down to 6mg pred and all is good.

SebastianCRO
05-15-2010, 01:36 AM
I was on endoxan for about 7 or 8 months.. then I got on to MTX for about 4 weeks and than te flare happened, so im back on endox.
The last 3 months I had the same dosage of prednisone - 10 mg.

thnx for the quick replys :)

elephant
05-15-2010, 02:45 AM
Hopefully this time around the cytoxan ( enfox) will kick wegeners &^^%$!!!

jola57
05-15-2010, 02:57 AM
I would say that your prednisone should be up to at least 40 for a couple of months, that is what worked for me as well as being on it for 1 year.

Terri
05-16-2010, 12:01 PM
Hope you continue to improve

jola57
05-16-2010, 04:08 PM
Terri how are YOU doing?

Terri
05-17-2010, 11:23 AM
Thanks for asking Jola. I've been having some terrible days (& nights)
Mostly pain in my right leg and sometimes all over body aches. I don't know what is going on. My Dr. doesn't seem to think it is a flare.(I know what you are going to say)
I only have a few more weeks to work and then off for the summer. I hope I can finish up the school year. I was reading on another thread where Sangye was explaining about too much exercise interfering with the prednisone. That may be my problem. I have been doing the WiiFit plus doing outside work and keeping busy no matter how much pain I am in. I think if I stay busy I won't notice . That makes sense because some of the pain I feel is the pain I remember before I was diagnosed and before the pred. Sort of a numbness, burning pain. I've been thinking while I am off for the summer, I want to get an appt. either at JH in Baltimore or Cleveland Clinic. I'm in the middle either way about 4 hr drive. I know it would be well worth it and my PC Dr. said they could consult with her once I got started if no big complications.

elephant
05-17-2010, 12:26 PM
Terri, that is great that you are going to make an appointment. Just don't get into denial. We all have been there, we recognize the symptoms and then blow them off to something else.
Stay strong and make that appointment soon. Hope you feel better soon. :)

Sangye
05-17-2010, 12:33 PM
Terri, are you having any other signs/symptoms other than body aches? Fatigue, sweats, etc...? If not, try reducing your exercise and outside work and see if your pain decreases.

I'm really glad to hear your plans for JHU or CC. Come to JHU! We can meet for lunch! I suggest you make an appt now-- many of the docs go on vacation in the summer. Even for existing patients it can be hard to get in with less than 2 months' notice (unless it's urgent, of course).

jola57
05-17-2010, 04:58 PM
that is good Terri, make the appointment. Know what you mean about the body aches. I am down to 6 pred and beginning to feel ugly aches in hands and arms. My bloodwork seems to be fine but my ANCA is again close to 200. I will up yhr pred to 7 or 8 for a few days again and see how I do. I do not want to flare like the last time.

elephant
05-17-2010, 08:22 PM
Jola, that is how I felt when I got to 5 mg of prednisone and had to increase it to 10 mg. I am down to 8 mg....trying to be quiet not to wake up the sleeping dog. :)

JanW
05-17-2010, 11:08 PM
What immunosuppressant are you on in addition to the pred, Terri? Any plans from your doc to keep lowering the pred but upping the other meds?

Sangye
05-17-2010, 11:48 PM
Jolanta, is your pain the same quality as Wegs joint pain? I really can't believe the kind of pain I've had with tapering pred-- REALLY bad some days. But it's not Wegs pain and it completely goes away after a few days at the new dose. If I hadn't had Wegs joint pain before I'd be terrified it was flaring. You're the only one who can say for sure, though.

Elephant-- shhhhh! Gotta tiptoe around the doggie.....

Terri
05-18-2010, 11:20 AM
I'll see what I can do about appt. at JHC. That would be great to get together for lunch Sangye.

Jan, I am currently on 5mg on prednisone and 8x2.5 Methatrexate once a week.

Something interesting happened today....I started physical therapy. My therapist gave me a good once over and said something about my L5 and put a wedge in my right shoe. We did several excercises (nothing strenuous) and then I had to lay on a heating pad and it felt almost like little fingers flicking my lower back for about 20 min. Tonight as I am writing this, I can honestly say my pain is less severe then it would be normally this time of night. I'm looking forward to the next session to see if I continue to improve. ???
My Dr. says it isn't true but I swear I can tell every time a cold front is coming or any front that changes. That is when I get the "all over" body aches and pains. Once the front passes, so does the pain.

Nancy
05-18-2010, 11:47 AM
Hi Terri -
you have every right to believe it is true with changes in the weather and changes in your body ( responses of increased aching, stiffness and generalized joint pain...). Working with patients in Physical medicine and seeing so many have these effects/outcomes - I joke that they can tell me if it will rain 2 days before the weatherman can confirm it... Just tell everyone that you have a new summer position as a human barometer....and will take tips...; ) If they were able to improve your pain with some shoe inserts and some ultrasound to your back - that is awesome... some of the simplest actions - seem to make such a difference....Consider aquatic therapy...warm if your body can take the heat...
I had not seen the threads from our croatia friend... I hope that everything improves and that you are able to pursue your love affair with the sports teams and dealing with the american way of life... Sometimes twisted, other times very blessed... I have had more interest in seeing how the other half lives ( Canada with socialized medicine, etc...) and comparatively dealing with insurance issues and plans here in the states... I can truly say that it has been a joy to "see" other people on the web who have this engagingly rare illness - although I get tired of being told to buy lottery tickets...secondary to the rarity of the disease.. yeah right!..
I have met people who have been newly Dx with Wegener's in hospitals to share that life is approachable, enjoyable and no, you will probably not die immediately... no matter what others/web sites say... I have appreciated the team effort to help people dealing ( reeling) with this Dx... and get them the appropriate care sooner... After 14 years since diagnosis... It has been interesting... As my brother states "Any day above ground is a GOOD day"... Thanks for the opportunity to read, share and add some insights...

elephant
05-18-2010, 08:15 PM
I hear that alot Terri, I believe you!

Sangye
05-18-2010, 10:28 PM
Terri, yay for going to PT, boo for someone sticking a shoe insert in without doing proper radiologic measurements. That small thing can wreak havoc on your body, even if it felt good at first. There is absolutely no way for them to tell if you need one or what size. They differ by millimeters! To determine it by looking for the hips to be level is like filling your car tires just by sight.

The safe way to determine if you need an insert (and what size) is to see a chiropractor. Many people will look like they have a shorter leg on one side when it's a torque in the pelvis. If you don't fix that and just prop it up, you'll do a lot of damage. I have a scoliosis that causes one leg to appear shorter. Putting an insert in my shoe makes my pelvis level. However, x-rays of my scoliosis show that an insert would worsen the rotation of the vertebrae (scoliosis is a lateral curve, which also causes vertebrae to rotate). If I wore an insert, I'd destroy my lumbar discs and cause widespread damage.

To give you an idea of how sensitive the body is to inserts: If a patient comes in with an insert that they've worn more than 6 months and you determine they don't need it, you can't just take it away. The body has adapted from head to toe--every single joint, muscle and ligament. You have to decrease the size by 1 mm a month to allow the body to adapt. Faster than that and the person could become quite ill.

I don't routinely x-ray as part of the chiropractic technique that I do, but if I were evaluating a patient for inserts I would require an x-ray.

About a month ago one of my car tires was nearly flat (someone let the air out). The tire store guys filled it up but the gauge on the hose wasn't working right so basically they were unknowingly filling it by sight. I drove to Baltimore and when I got there the whole car started to shake like it was going to explode. Honestly, I've never seen a car do that. It turned out that they inflated the tire to DOUBLE the normal. After driving 50 miles that had thrown off the all-wheel drive mechanism. Thankfully it didn't damage it. The tire looked the same as the others, even with twice as much air. Imagine if that were a body!

Terri
05-19-2010, 10:31 AM
G, thanks Sangye for the info. When you compared it to the air in tires, it makes perfect sense.
He actually measured from my belly button to the end of my toes. My left was longer. I said I'm not surprised after limping around for the past 3 yrs and not putting pressure on my right leg.
I will take notes of what you said and mention it on my next visit and thanks again as always. You probably saved me future problems that I don't need.
If I'm feeling ok this weekend, hubby and I might head to Va. The Chesapeake has been calling us for some time now. Getting that need to get on the water itch....

Terri
05-19-2010, 10:34 AM
P.S.
Nancy, I meant to say.....love the avatar
Is he french? LOL

Sangye
05-19-2010, 10:37 AM
Yeah, the measurement will still be inaccurate if the pelvis is torqued. A prolonged limp will certainly cause a lot of issues-- pelvic torque among them.

I hope you and your hubby have a great time on the Chesapeake! You deserve some fun. :)

Nancy
05-19-2010, 10:54 AM
"Oui" (yes) - He has a raspberry beret - but chose to go formal for the pic... : ) Actually my Mastiff would review me with full confusion and distain if I tried to take his picture like this... they are so sweet... and drool is a large part of their personality as well.

Sangye - you make so many good points... The docs that I worked with did follow up with radiologic reports and re-evaluations - but trusted specially trained therapists for initial measurement and placement.... I also agree that the other issues with scoliosis after correction is true - kind of at times, trading one problem for a whole new one... Thanks for the insight!! Many issues that I have never fully considered! The type of measurements that terri mentioned - I have Never heard of...

Sangye
05-19-2010, 11:45 AM
We learned that type of measuring in chiropractic school as part of evaluating for an anatomical short leg (vs functional). There are several steps to it and it would never take the place of radiologic evaluation.

I have great respect for PTs, having spent a lot of time in it due to a knee and shoulder injury in my 20's.

SebastianCRO
02-01-2011, 08:16 AM
just wanted to say hello to all of my WG friends :)
I'm hoping and prying for all of us every Sunday so we can all have a life we deserve..

STAY POSITIVE..

stay safe and never give up,
Sebastian

ps..
GOOO STEEELEEERS :D

drz
02-01-2011, 11:56 AM
just wanted to say hello to all of my WG friends :)
I'm hoping and prying for all of us every Sunday so we can all have a life we deserve..

STAY POSITIVE..

stay safe and never give up,
Sebastian

ps..
GOOO STEEELEEERS :D

I like the cheeseheads. Sorry!

elephant
02-01-2011, 01:11 PM
I love the Cheeseheads too !

Brooke
02-02-2011, 01:18 AM
I'm with you Sebastian!! GOOO STEEELERSS!!!! HEHEHEH, actually my husband is a HUGE Cowboys Fan, but since they didn't make it, we are going for the Steelers!!

Sangye
02-02-2011, 02:04 AM
I don't even know what you people are talking about. I do like the foam Cheesehead things, though. I like cheese.

Brooke
02-02-2011, 03:52 AM
LOL @ Sangye!!

elephant
02-02-2011, 11:54 AM
I will be eating cheese when I watch the Packers.

Terri
02-02-2011, 12:10 PM
Hey, hey hey.....you might be wishing you had a terrible towel to wipe the drool from your face when the STEELERS win.LOL

Palmyra
02-03-2011, 03:08 AM
Sebastian,
You sound so upbeat (good!) in your posts, I had to respond. Welcome to the group, and I hope we hear more from you in the future. Keep up the activity!

ScreaminMeanie
02-03-2011, 07:48 AM
Haven't been around here for very long myself, but wanted to chime in and say "hi" to you, Sebastian. I love the picture of you with your motorcycle. What kind is it? (I have a motorcycle, too!)

marta
02-03-2011, 09:57 AM
Zdravo Sebastian, Kako si? Welcome to the site. This place has been a life saver for me and I loooove the people on here. Too bad we all had to look for it, but glad we all have found it.
I was born right next door to you... Bulgaria (Sofia) but live in Canada right now.

I've been off the site for a while - dealing with a flare, and in and out of the city, so I just ran into this post today and wanted to say hi. Hope to be able to talk more and you can remind me of all the beautiful things I remember from that part of the world.

Sangye
02-03-2011, 01:57 PM
Sebastian has been a member for awhile but doesn't treat us to his posts very often. :wink1: