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.

[rebekah]

Welcome to the group, Savva! Glad to hear WG is under control for you – that’s awesome to hear. I'm only 22 and was diagnosed January 2012, so I'm still learning... You will find there are a lot of amazing people here full of great information. I've learned more in the month here than I have the past year living with WG.

[Pete]

Hello Savva,

Welcome to the forum. I hope you find good information and support from us.

As for specialists outside Russia, the Vasculitis Foundation's website lists many hospitals and doctors around the world. Just to mention a few that other forum subscribers use: Mayo Clinic and Cleveland Clinic (I get treated at Cleveland, and they are very, very good!) in the USA and Addenbrooke's in England.

Glad to hear you're in remission. Hope you sustain it!

[pberggren1]

Welcome Savva:

How much pred are you on right now? It sounds like you are in remission. If you are on 20mg and feel good then I think I would taper a bit fast to 10mg then go a bit slower when you hit 9 or 8, then go about 1mg per month. Do you guys have the 1mg tabs over there?

I'm always Rushin by the way......lol

[drz]

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 :)

I have used this when splitting a 2.5 tablet. They are scored to make such splits easy and much easier than trying to quarter a 5 mg. I have quartered a 2.5 too but found it easier to split a 1 mg tablet. I think the key is to go slow and to allow your body enough time to adjust to the change in level if you want to minimize the size effects of tapering.

[annekat]

Welcome, Savva, and I'm glad to read of your WG experience. It sounds similar to mine except that they have gotten you into remission faster. I may be close to remission, but did have a flare recently, so can't say that I am. It sounds like your doctors are doing a good job with your care, and possibly it is as good there as anywhere.

I like the sound of a very slow pred taper, even starting at 30mg. Splitting the pills is a pain, I know because I've done it. I hear there are 1mg. pills available some places. But it would be easier to quarter a 5mg pill than a 1mg pill, so that wouldn't help you much at this point.

I'm glad you are on the forum, and hope to hear more about how things are going for you.

[mishb]

I have 1mg and 5mg pills and they are exactly the same size and they don't have markers or numbers on them to know which one is which.
It can be a big problem when taking 6mg - Have a just taken a one or a five out etc. Now that I am down to 3mg it is a lot easier because I just use the ones.
Both tablets are scored through the middle for easy splitting.

[annekat]

I have 1mg and 5mg pills and they are exactly the same size and they don't have markers or numbers on them to know which one is which.
It can be a big problem when taking 6mg - Have a just taken a one or a five out etc. Now that I am down to 3mg it is a lot easier because I just use the ones.
Both tablets are scored through the middle for easy splitting. Hmm, they're even the same color? That seems odd that they wouldn't be easier to distinguish. I have found that the score mark doesn't always help that much in getting an even split. But it's better than nothing. I do now use a pill splitter, not just a knife, and that's reasonably OK, but not perfect by any means. Someone on another thread mentioned powdering the pred and dissolving it in a measured amount of tepid water, then dividing it up into the increments you want, and drinking your doses.

[Dirty Don]

I would think that powder, dissolution, and water parts would be even more inexact in that just swishing/mixing the drugs in the water would not stop clumping...unless one has scientific mixing apparatus...

[annekat]

I would think that powder, dissolution, and water parts would be even more inexact in that just swishing/mixing the drugs in the water would not stop clumping...unless one has scientific mixing apparatus...I don't know, sounds like too much trouble for me to try anyway... but someone's doc recommended it. Just can't remember whose. Maybe there was more to it than that.

[Savva]

Welcome to the group, Savva! Glad to hear WG is under control for you – that’s awesome to hear. I'm only 22 and was diagnosed January 2012, so I'm still learning... You will find there are a lot of amazing people here full of great information. I've learned more in the month here than I have the past year living with WG.

Hi Rebekah. January... I hope you're doing great.


Hello Savva,

Welcome to the forum. I hope you find good information and support from us.

As for specialists outside Russia, the Vasculitis Foundation's website lists many hospitals and doctors around the world. Just to mention a few that other forum subscribers use: Mayo Clinic and Cleveland Clinic (I get treated at Cleveland, and they are very, very good!) in the USA and Addenbrooke's in England.

Glad to hear you're in remission. Hope you sustain it!

Thanks for the info.


Welcome Savva:

How much pred are you on right now? It sounds like you are in remission. If you are on 20mg and feel good then I think I would taper a bit fast to 10mg then go a bit slower when you hit 9 or 8, then go about 1mg per month. Do you guys have the 1mg tabs over there?

I'm always Rushin by the way......lol

20. Have no idea about tapering. And I am taking it very seriously. That's the story: one day when I got out of the hospital and headed back home to Tomsk, I bought some prednisone from the pharmacy in Moscow downtown. I had been taking it for 3-4 days when I started to feel increasing pain in my legs. One morning the pain even made me to take very strong large amounts of painkillers... I just couldn't find out what was that all about: just off the hospital and experiencing such difficulties already. No matter how much painkillers I got, it was no help to me. It was then when I finally realized I bought fake drugs. Swaping it with other pred, bought in Tomsk, helped immediately. That's it. I heard that if you taper too fast, you might experience just the same. I do not want that to happen, so I am very careful.


I have used this when splitting a 2.5 tablet. They are scored to make such splits easy and much easier than trying to quarter a 5 mg. I have quartered a 2.5 too but found it easier to split a 1 mg tablet. I think the key is to go slow and to allow your body enough time to adjust to the change in level if you want to minimize the size effects of tapering.

1 mg pill. Thanks for the info.


Welcome, Savva, and I'm glad to read of your WG experience. It sounds similar to mine except that they have gotten you into remission faster. I may be close to remission, but did have a flare recently, so can't say that I am. It sounds like your doctors are doing a good job with your care, and possibly it is as good there as anywhere.

I like the sound of a very slow pred taper, even starting at 30mg. Splitting the pills is a pain, I know because I've done it. I hear there are 1mg. pills available some places. But it would be easier to quarter a 5mg pill than a 1mg pill, so that wouldn't help you much at this point.

I'm glad you are on the forum, and hope to hear more about how things are going for you.

Flare sounds extremely unwanted... I hope you are fine now.


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.

Thank you.

[mishb]

Hmm, they're even the same color? That seems odd that they wouldn't be easier to distinguish. I have found that the score mark doesn't always help that much in getting an even split. But it's better than nothing. I do now use a pill splitter, not just a knife, and that's reasonably OK, but not perfect by any means. Someone on another thread mentioned powdering the pred and dissolving it in a measured amount of tepid water, then dividing it up into the increments you want, and drinking your doses.

Yep, little white pills that look identical.

I'm not sure about the water trick either.
How can you make sure that parts of the pill is in each bit of water and not just all dropped to the bottom of the glass?

[drz]

I don't like the taste either so this dissolve in water approach would be a turn off or no go for me.

[Alysia]

Hi Savva,

I live in Israel. in the north of it. I never met face to face any weggie. all my doctors, except my WG doc, never saw any weggie but me. some of them heard about WG only in medicine scool and then from me. so maybe that is the reason I dont have remission yet. it seems that your docs saw enough weggies to know how to treat you so well to have remission. :thumbup:

welcome to the best forum in the world.
one of the benefits of having WG is that you can be a member of this forum :)
and "meet" amazing people from all over the world.

[annekat]

Yep, little white pills that look identical.

I'm not sure about the water trick either.
How can you make sure that parts of the pill is in each bit of water and not just all dropped to the bottom of the glass? I have no idea about the water trick. It's just something a forum member mentioned that was recommended by his or her doc. I think it was a new member, but not sure. It seems to me it should be possible to work out a taper either by splitting pills or by alternating doses, or both.

[Dirty Don]

I've recently been 'allowed'to drop another mg, but am alternating between last and new dose and so far, knock on wood...ouch, have no side effects or symptoms.

[annekat]

I've recently been 'allowed'to drop another mg, but am alternating between last and new dose and so far, knock on wood...ouch, have no side effects or symptoms. The alternating thing works well for me. I do the same thing when dropping the dose. In my case, my doc gives me a timeline for when he'd like to see me drop to a certain level and has been leaving it up to me how to do it. He wanted me back to 10mg. by the 15th of this month, when I'll see him, but it doesn't look like I'll make it. (He's the opposite of the docs who "allow" you to drop.)

I certainly hope your drop goes well, Don, with no ill effects, or only temporary ones.

[chrisTIn@]

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

Hallo Savva!
Nice to see someone from Russia here, you're the first Russian member.

Are you still in the hospital?
I hope all is well.
Good luck to you. :smile:

[Savva]

Nice to meet you, Christina.
Yes I am still in hospital. But ok, it is a regular check, not a big deal.