Hello from Poland

[Chocofun]

I joined the forum because my sister was diagnosed last month. I am from Warsaw. My sister lives in Rybnik. I want to learn as much as possiblie about WG. I know you will help me. My sister is 50 years old. Since 10 years she's on drugs - stomache ulcers. She started WG therapy 3 weeks ago - only endoxan (every two weeks) no steroids ?. Luckily lungs and kidney are not attacked. She can not sleep due to the pain. She is very weak. Her nose is blocked. I am greeting all of you and wish you all the best.

[Dirty Don]

Welcome Chocofun...nice of you to do this for your sister. She should be on some sort of steroid, usually prednisone. The early 'knockdown' doses are high, but the goal is to wean from them eventually as they control the inflammation! Also, she should be on something like mtx or even rtx to knock down the AI system. Keep asking questions of the docs and on here, get an experienced WG doc or at least have her docs consult with one. Best of luck to you.

[annekat]

Welcome! You've come to the right place to learn about WG. Don is right, and others on here will go into more detail about what your sister needs so you can be sure she is getting it. I don't know what endoxan is, maybe another name for one of the immunosuppressants we discuss on here? But if she isn't getting a steroid, then I am suspicious about the care she is getting. You might consult the Vasculitis Foundation website and see if any specialists are listed in Poland. Best wishes to you and your sister, and keep us posted,

[drz]

I joined the forum because my sister was diagnosed last month. I am from Warsaw. My sister lives in Rybnik. I want to learn as much as possiblie about WG. I know you will help me. My sister is 50 years old. Since 10 years she's on drugs - stomache ulcers. She started WG therapy 3 weeks ago - only endoxan (every two weeks) no steroids ?. Luckily lungs and kidney are not attacked. She can not sleep due to the pain. She is very weak. Her nose is blocked. I am greeting all of you and wish you all the best.

She must be taking the endoxan IV but generally the oral on daily dose seems more effective according to our experts. We refer to it on this site as CTX for an abbreviation to help you follow our discussion. You need to drink lots of water with it to prevent cancer of the bladder or other problems. But the pain usually comes from inflammation and prednisone or some steroid is used to reduce the inflammation and the pain. They use a lot at first and then a slow taper down. some get off entirely , others end up with a lower maintenance dosage. Mine is 5 mg daily and azathioprine which is generic Imuran. Your names may be different in Poland. Regular nasal rinses seem to help some with nasal symptoms. Read a lot here and ask questions.

[Psyborg]

GOing to parrot Don a bit. THe Steroids are what what tends to help with the pain as they control the inflammation.

[mishb]

Hi Chocofun, what a wonderful name :biggrin1:

I am so glad that you are taking the time to ask questions, on behalf of your sister - she is very lucky.

My guess is that she is not on the steroids due to the stomach ulcers :unsure:

She also needs to do sinus rinses (if she is not already) to try and clear her nose a little.

I hope your sister starts to feel better soon.

[Alysia]

Hi Chocofun.
your sister is lucky to have you, caring for her. welcome to the forum. I believe you can find here answers and info. good luck.

[Chocofun]

Dear All- thank you for your replies and warm words. In Poland we do not have specific WG forum and I can imagine how lost and lonely people are after the diagnosis. Your work is excellent. The illness is so rare - sharing the knowledge and experience and hope is biggest precious you can share. Yes- polish endnoxan is ETX. She takes oral drugs but not daily? and Michalle is right - doctors tried not to add steroids to protect her stomache, but the pain grows. Fever started week ago - up to 39 Celsjus Degree. Last days were very difficult for her and my brother in law. The tests show very, very high OB and CPV. Pain is crazy. Two days ago she she took first dose (4mg) steroids. Yestarday due to high pain and blood test results reumatologist rise the dose of steroids up to 8mg. I pack my family I will drive to her. I can not stop thinking how to help her. I do not feel her pain but I am in pain too. I want her to beat this illness. Latest on Mon she will enter the med clinic in Katowice(Ochojec).
I am very thankful for your support. Warm greetings and best lack to you all!

[annekat]

Chocofun, this forum is international in its scope; check the link for the Weggie forum members map at top of page, and you will see people from all over the world have added their "pins". You can do the same.

Best wishes for a significant improvement soon, for your sister.

[mishb]

I hope they can reduce her pain levels, quickly.

Our thoughts and prayers are being sent over to you and your sister.