new from Tomsk

[Savva]

Hello, I am a new member, 21 years old. Was diagnosed back in 2012. April. I have been keeping an eye on the forum for a year now. I am from Russia, Tomsk and have already pinned my location on weg map.

I have lungs and nose involvement. My condition now is fine. I feel good enough to even go to my gym regulary. I want to know where those with wg in Russia are treated. Real specialists out there in Russia, do they exist? I found a good one in Moscow so currently I keep in touch with him. So if you are Russian let me know.

Some boring facts about my condition:

• I am in remission. At least that's what they say.

• I had enough of cyclophoshamide iv. Total 19800 mg.

• Now on azathioprine 150 mg and pred 20 mg daily.

• And a bunch of other meds...

Now in hospital again in Moscow. Just checking everything's alright. Will be back home soon.

[mishb]

Hi Savva and welcome to the forum.

I'm glad you could finally get on and become a full blown weggie forum member........but terribly sorry that you have WG.
I think you are the first Russian member but I hope I am wrong and that there is someone else on here that can help you out.

How wonderful that they say you are already in remission.....your guy in Moscow obviously knows what he is doing, in regards to your treatment.

Take care

[Savva]

Thanks, Michelle.

In fact I am not the only one. Weggies and other vasculites folks from all over Russia are getting treatment here. Every time I'm here (and this is my 3rd hospitalization) I meet more and more people with WG. I am just looking for proper treatment abroad, do not want Moscow to be my only hope. It's so hard to be sure I'm getting everything modern medicine can offer-that's why I'm here.

[Psyborg]

Welcome to the forum. Glad you found us, but sorry you needed to. It sounds like you are getting good care, as that sounds like pretty standard medication. Do they have you reducing the prednisone yet?

[Savva]

I have been on 55 mg of pred in the beginning of 2012. Now on 20. Been reducing it slowly. Starting from 30 mg it was 1.25 mg reducement per 2 weeks. In a week time I think they will discuss further tapering.

[Psyborg]

Other than the size being different than what we see here that sound right on target to me. 1.25 mg is a new one to me, pretty cool how things very by region

[Savva]

1.25 is a quater of 5 mg tablet. I used to cut it with a knife in pieces. Then gather the remainings for the next morning. I was told this is the only safe way to reduce pred, because adrenals are extremely sensitive to even this small change.

[Dirty Don]

Welcome Savva, glad you found us! Don't know or haven't seen anyone on here from Russia, but if they have been, they can now find you. The neat thing about WG is that it isn't particular about borders!!!! You seem to have the WG under control, so someone is doing the right things with and for you. Please feel free to ask all and any questions you may have, also share your experiences when you feel comfortable! The best to you!

[Savva]

Thank you Don!

[Barbara N]

My father worked in biomedical research and spent a lot of time in Russia. Several of his inventions are installed in Russian hospitals. He had a very high regard for the Russian medical advances and treatments because he also worked at Mayo Clinic and Presbyterian Hospital in San Francisco_and many in Sweden and one in Spain installing his intensive care monitoring unit. Welcome to the group.