Hello, yet another newbie!

[malin]

Hi everyone!

My name is Malin, I'm 21 (22 in July) I live in the UK but I'm Swedish, I was diagnosed with Wegeners when I was 16 and it has mainly affected my ears, I suffered hearing loss and wear hearing aids on both ears.
At the moment I'm in the middle of dealing with a flare up and getting used to new doctors (because of moving to the UK).

I've been told my kidneys are most likely affected as well and I've got constant blood in my urine samples but my renal doctor says my kidney function is still normal so I don't have to "worry".

My sinuses are also "acting up" but we're not sure if that is related to my illness or if it's just "normal" sinus problems, I've got an ENT appointment at the end of the month which should help clear it up.

Other than that, I'm currently on pred & mtx. The pred is because of my recent flare, my ESR and CRP were quite high so my reum. put me back on pred.

That's it for now I think! Haha, got to get back to work!

[elephant]

Hi Malin and welcome. Hope the methotrexate works for you. I myself have sinus issues too. Wish you the best!

[JanW]

Hi, Malin - How long have you been on mtx? I just started my first 15 mg dose last week.

Welcome to the forum. There are lots of great people here who can answer any question!

[Sangye]

Hi Malin, I saw your other post about ANCA first. Welcome again!

It always stops me in my tracks to see someone who's had Wegs from their teens or 20's. I'm glad at least it hasn't affected you more severely. (Not that losing your hearing is a small thing) Do you have a Wegs specialist there? Some of our UK members do. Addenbrooke's is one of the world's top centers for treating Wegs.

Seeing that you're from Sweden makes me wonder about our other Swedish member--Moyan. She hasn't posted for several days and is usually a regular contributor. I sent her a PM yesterday but haven't heard back. I'm getting worried, as she has numerous symptoms and poor care. Has anyone else heard from Moyan?

[malin]

JanW - I've been on mtx for almost 6 years now. I'm on a 25mg/week dose.

Sangye - Not a specialist Weg. doctor, just two different rheumatologists. No one has ever mentioned a Weg. specialist to me before. :/
When I was still living in Sweden my rheumatologist was not very good, he didn't seem to know much about Wegeners at all and the over all information I got, (even when I was first diagnosed) was very very poor.
The only good thing was my ENT specialist, Adrian Strom, he was brilliant, I miss him!

Over here in the uk I'm just seen by NHS rheumatologists and NHS ENT doctors. Mostly my care has just been down to "maintenance" more than anything else.

I'm sorry to hear about Moyan, hopefully she's ok, just not been able to get online?

[JanW]

Have you ever been able to be off mtx? (or have your doctor ever tried this). What about pred?

[malin]

No I've never been off the mtx and my doctor in Sweden never tried, in the UK, I think I'm still too "new" for them to try this and unfortunately since I'm still having flares they are even considering changing from mtx to something different. :/

I used to be off pred. I am now back on it because of my recent flare but before now I was off pred for years.

[Sangye]

I'm hoping our UK members will chime on. Jack sees the very best Wegs specialists but is temporarily unable to be online-- he's in the hospital with multiple fractures after a bad fall.

I never knew about Wegs specialists until I moved to Maryland and found Johns Hopkins. I went for 2.5 years with docs who really didn't know about Wegs. Wegs specialists see hundreds of Weggies. Since each patient is so different, you really need someone with vast experience.

[pberggren1]

Hi Malin:

My name is Phil Berggren. I am 33 and was dx in April of 2003. My ancestry is Swedish. My Dad's Dad's Dad ( or my great grandfather ) came directly from Sweden. Also My Dad's Mom's Mom is from Sweden as well. Like Sangye said earlier Moyan is Swedish as well.

What do you mean about your sinuses acting up and being normal? My sinuses suffered quite a bit of damage from the first onset of WG so my new normal for sinuses is a bit of dryness along with more mucus and crusting and bleeding. Right now I think I may be having a flare or some fungal or bacterial infection. My sinuses are worse than normal and are very tender feeling inside along with aches and pains inside my head and face that seem to be in the bones themselves. My teeth also hurt as well from time to time. I don't have any achy joints right now but my energy level is certainly down and I feel a gereral malaise.

I know that Jack is from Birmingham and sees Dr's Bacon and Savage, 2 of the leading WG specialists in the world.

When were you dx and how long were you sick before you were dx?

Take Care and welcome to the site,
Phil the Swede

[malin]

Hi Phil!

I'm just writing this to let you guys know that I'm not ignoring you! I'm just not feeling too good at the moment and have been busy working & sleeping most of my free time :/
I am thinking maybe I should try and write down my "history", like how, when, where and everything regarding when I got diagnosed and how Weg. is affecting me.
I'll try to keep it as short as possible and hopefully I should have it all done within a few days, as I'm sure you all know, Weg. stories are never uncomplicated or easy to understand without the "whole" picture.

Soo, I will see you guys in a couple of days! Just gonna try and rest and get my energy levels back up.